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Going Places Body Safety
The Importance of Teaching Children
35--%2 #!-0Summer Fun
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inside this issue... Mar apr 2014
Moms Share 15 Real Julie Jones Shares about Rolling on with a positive attitude!
Safety 22 Body The Importance of Teaching Children Places: 34 Going Improving Participation in Community Activities
26 Phelan-McDermid Syndrome What is it? psn community news
9 Noteworthy! Light It Up Blue! New National Partnership to support and expand Digital Technology “Alert Card” to help young people with dyspraxia in difﬁcult situations
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real life Dr. Doug
0 , ! . . ) . ' s ) . & / 2 - !4 ) / . s ) . 3 0 ) 2 !4 ) / .
PROFESSION PROFESSIONAL AL
20 Motivation Is the Foundation For Your Child’s Success
Going Places B Body Safety S
The Importance of Teaching Children
Cover Image Courtesy Miami Children’s Museum
Builder 38 Career How Mom and I grew in self-conﬁdence through my SUMMER CAMP experience
Moments 55 Proud Sharing “ I Can ” Attitudes
35--%2 -% %2 2 #!-0Summer Fun MAR/APR 2014
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inside this issue... Mar apr 2014 your life
28 30 32
Sharing Real Finds Spring Cleaning Tips
Mommy Time Outs Butchart Gardens
Network Developing Your Own
special resources Camps 36 Summer Summer Fun Tools 48 IEP At your ﬁngertips
health & ﬁtness Fitness Fun 42 Physical Fitness and the IEP
44 Nutrition Stop the Fad Dieting Special Diets
46 Trying New Foods fun & functional of Play 50 Power Infant Games Grow Brains
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fun for kids: 52 “Foodie” Hatching “wide-eyed” Chicks Tips 59 ASL IEP Communication Plan
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Editorial Submission are welcome. We reserve the right to edit, reject, or comment editorially on all submitted material. We can not be held responsible for the return of any submitted materials. Articles and advertisements in Parenting Special Needs Magazine do not necessarily reﬂect the opinion of the publisher nor does the publisher assume responsibility for statements made by our advertisers or editorial contributors. Acceptance of advertising by Parenting Special Needs does not constitute an endorsement of products, services or information. Parenting Special Needs Magazine, is © 2014 Parenting Special Needs, LLC. All rights reserved. Reproduction in whole or part without permission is prohibited. PUBLISHED BY: Parenting Special Needs ,LLC 518 S. Valencia Circle S.W. Vero Beach, FL 32968
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Daylight savings time....not daylight savings time......either way, why does one single, simple hour tend to mess up an entire day? But, mess up it does. That ﬁrst morning after we reset our clocks can be a real struggle to get going. And as I sat there trying too clear the “fog” from my mind, I was ever-so-gently reminded what it must be like for our special loved ones EVERY day. Not that I don’t think of it daily (which I do), but, it was simply reinforced on that day. It usually takes a few days for my family’s internal clocks to get “re-synced”....and eventually everything settles back down. So, in keeping with a theme of “change, at ﬁrst, is unsettling, but, in time, we can all adapt”, this issue is ABOUT CULTIVATING GROWTH GROWTH FROM NEW EXPERIENCES like Summer Camps; growth from learning about ways we can protect our loved ones by better understanding Body Safety; and growth from better understanding how we can motivate our loved ones. These three topics are covered in this issue with wonderfully insightful articles from some our contributing writers. As usual, there is much more for you to read about and I trust you will. Enjoy the Spring Season, the wonderful change of weather, and the sense of renewal that this time of year brings. All the best,
Coming Next Issue Cultivating Growth
Chantai Snellgrove Founder and Editorial Director email@example.com
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Meet Sebastian who attended a Miami Childrenâ€™s Museum Sensory Saturday. Here he is discovering, and exploring, clay. One Saturday of every month, MCM hosts yoga, art, music and other great sensory experiences. These are an inclusive accessibility event. Families can interact and network with each other to learn about resources in their community. For more information: sensorysaturday@ miamichildrensmuseum. org or call (305) 373-5437 ext. 126 Cover Image Courtesy: Miami Childrenâ€™s Museum
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Kimochis from Ableplay
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Light It Up Blue!
April 2nd World Autism Awareness
April 2nd is World Autism Awareness Day, and to celebrate, hundreds of thousands of people are coming together to Light It Up Blue. Join Autism Speaks to help shine a light on autism! Autism awareness is more important than ever – autism prevalence has increased 78% in 5 years and continues to rise. This increase can only be partly explained by improved diagnosis and awareness. Find out how you can get involved at www.AutismSpeaks. org/LIUB
New National Partnership to support and expand Digital Technology The Arc, an advocate for the rights of the disabilities community, and Comcast Corporation announced they have formed a new national partnership to support and expand digital technology opportunities for people with intellectual and developmental disabilities (I/DD). The Comcast Foundation is also providing funding to support The Arc’s national digital training program and improve technology access and services by launching up to 12 Comcast and NBCUniversal Digital Literacy Learning Labs in major metropolitan U.S. cities. www.eiu.edu/crowdfunding/autism/.
“Alert Card” to help young people with dyspraxia in difﬁcult situations The Dyspraxia Foundation has developed a credit card-sized resource to be carried by anyone yone with the condition. These cards can be used to o “Alert Cards” advise anyone (e.g. police, passers-by, emergency ency advice for ﬁrst services, shop assistants et.c) of the possible responders difﬁculties the carrier of the card may have, as well as providing contact details in the case of an emergency. It lists essential information on how to deal with someone who has dyspraxia including explanations of possible difﬁculties with social interaction, communication and understanding. firstname.lastname@example.org Image courtesy Dyspraxia Foundation
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Getting Ready for Summer
s the doldrums of winter melt away, and days become longer, we find ourselves daydreaming about summer sun, free time and fun. Along with our winter coats, we shed the academic stress and teacher expectations and let our creative sides shine and feel the boost of energetic emotion. Sand is synonymous with summer. Even if the temperature outside isn’t yet high enough for flip flops on the beach; kids can explore sand on their hands with the Sand Artist Kits from Creative Adventures. These are great projects to do inside and children love the sensory aspects of working with sand. Kits are geared to appeal to a range of abilities and the finished pieces will be sure to boost selfesteem, feed the inner artist, and allow any child to feel creative and accomplished. Summer is a time to enjoy a slower pace. Sleep late, relax and spend time with family. But you don’t want to lose sight of school friends you may not see as regularly.
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Helpful Books for Parents of Children The Spark: A Story of Nurturing Genius by Kristine Barnett Random House Publishing Group
Please send us an email describing your product. submit@ parentingspecialneeds.org Please make sure to put Product Share in email subject line.
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Kristine Barnett’s son, Jacob, has an IQ higher than Einstein’s, a photographic memory, and he taught himself calculus in two weeks. At nine he started working on an original theory in astrophysics that experts believe may someday put him in line for a Nobel Prize. And, at age 12, he became a paid researcher in quantum physics. But the story of Kristine’s journey with Jake is all the more remarkable because his extraordinary mind was almost lost to autism. MAR/APR 2014
W in it! My Image Braclet Maker My Image Bracelet Maker by Choose Friendship Company may be just the trick to keep friends close at hand. These bracelets can be personalized with clipart or your own pictures. Before school gets out, take pictures of your friends so you have them to adorn your bracelet and keep you company through the summer. As the school year winds down and kids gear up for summer, their emotions may ride that roller coaster of changing daily routines, having more down time to fill and planning different activities than what they are accustomed to. Kimochis plush characters and feeling pillows offer an easy, comfortable and secure way for a child to learn some self-reflective skills and begin to identify and understand inner emotions.
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For more play ideas and toys for children with special needs go to www.ableplay.org. This website was created by the National Lekotek Center to encourage children of all abilities to experiences the beneﬁts of play. Find us on Facebook Reviewed by Ellen Metrick, Director of Industry Relations & Partnerships, National Lekotek Center; email@example.com
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Left brain and right brain thinkers agree that our fabulous Chewy Pencil Toppers help concentration and relaxation. The pencil topper doubles as a ﬁdget toy and provides some awesome chewing. Chewing provides deep sensory input, increases attention span, and reduces anxiety. Safe for teeth and provides a buffer from the pencil. Fits any number 2 pencil. Variety pack with 3 toppers in assorted colors. For aggressive chewers. Age 4+. Price: $12.99
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Scooter with Handles Kids scoot as they work on gross motor skills, increasing arm strength and motor planning. Contoured handles help children grip this sturdy plastic 16” scooter and the generous size supports a full range of activities. Use in a sitting, kneeling or prone position to develop core strength as well as upper and lower extremities. Race, scoot through an obstacle course or just swivel around to work on balance and motor planning. Nonmarring plastic swivel casters. Age 3+. $19.99 www.funandfunction.com
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Rolling on with a positive attitude!
ulie Jones is a mother and blogger who contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her son, BJ. We asked her a series of questions; some serious and some “just for fun”. See what she said...
Photos Courtesy Julie Jones
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PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family. JULIE JONES: Our family is what would have once been described as a “typical family”. There is a mom, dad and two children (a boy, BJ, 18, and a girl, AJ, 11). But, there is nothing typical about the way we function as a family because our son was born with Cerebral Palsy. We believe in approaching life with a positive attitude, but there is no denying that having a child with a disability affects most aspects of our life. Our family has been shaped by a determination to ﬁnd solutions to problems as they arise, and a positive attitude. Travel and weekend outings are something that have also bonded us. Having fun times as a family has been the key to our strong relationships. Our son, BJ, has made huge improvements in the last six months. He is a happy, social and determined teen. PSN: Tell us a little bit more about your child’s diagnosis and personality. JJ: I had an uneventful pregnancy and birth with BJ. When I left the hospital, I was unaware there was anything “amiss”. It was only when he didn’t have good neck control at the same stage as other babies that I started to ask questions and seek advice. At 5 months of age we were sent to a physical therapist to “help him improve his muscle tone”. After a few visits she suggested that he may have Cerebral Palsy. BJ was a happy baby but his determined streak was evident early on. PSN: Share with us something YOU, personally, had to overcome by being a mother to a child with special needs? JJ: I like to ﬁnd solutions to problems and Cerebral Palsy cannot be solved. Throwing us into every kind of therapy (speech, physical and occupation therapy) was my “solution” of sorts. It became abundantly clear after a few years of embracing all therapies that having a child with Cerebral Palsy was a marathon, not a sprint. I was going to burn myself out. PSN: What have been some of your biggest obstacles/challenges raising your child? JJ: Determination is a ﬁne quality and that is the reason BJ has reached so many of his goals and continues to do so. However, his determination to
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work against me at times was a challenge. I learned early on that he had to see the purpose (or rather what was in it for him) in order to put the effort into working towards a speciﬁc goal. I have had to be inventive with my approach and work with this trait; always reminding myself that it will help him achieve more. PSN: What is something your child does that you’ve come to appreciate as a gift? JJ: BJ learned to hug a few years ago. It was a great thrill to see him use two hands and to squeeze with all his might. It is a real show of his love and affection. Each evening he won’t go to bed without giving everyone a hug including his Grandparents who are usually visiting to help. PSN: What has school/education been like for your child? JJ: BJ has been very happy throughout his schooling. It certainly met his expectation…but not always mine. He is very social and has been popular with staff and students. He welcomes everyone like they are a “rock star” and that is a lovely feeling for everyone. PSN: Will you share with us some life lessons you’ve learned on your journey raising your child with special needs? JJ: I have several lessons learned. As parents we are BJ’s best advocates. No one else has the same vested interest. Choose your battles, not only with your child, but also, with school staff. Pick what is the most vital issue or goal and follow through with that one. Accept that you don’t know what the future holds. Work in Photo Courtesy Julie Jones
the “here and now” with therapy and goals related to therapy. Celebrate the small achievements: milestones like sitting, standing and walking may or may not happen but every little step towards any one of those goals is important. BJ learned to turn on a light switch – it may seem tiny, but, it empowered him to control his environment. This made him happy AND I knew he could then isolate one ﬁnger. That was an important step towards using augmentative communication. Try to ﬁnd solutions to problems yourself. Have conﬁdence to trial things and take your ideas to therapists. Take time out for yourself: everyone needs to have time to refresh and reenergize. Spend time as a family having fun. Laugh and play together. Some of BJ’s progress would come after a holiday. Our therapists felt that the time out gave him time to consolidate the skills he had been working towards. PSN: What do you know now that you wished you had known earlier? JJ: I now know to trust my gut. If I feel a therapist or doctor will not suit BJ’s way of learning then I
would swap within a few weeks. I should have had more conﬁdence in myself earlier on. PSN: Do you have a proud moment about your child that you would like to share? JJ: When my son was diagnosed with Cerebral Palsy I remember my ﬁrst question was “will he walk”? At that time it seemed like the most important milestone. As time went on, I realized that walking wasn’t the main goal I should have. The fact that he was non-verbal created far greater frustrations than not walking. My main focus became being verbal or having good hand function to be able to use augmentative communication. Our focus shifted and we accepted a wheelchair as a part of life. We continued to do standing practice and walked BJ up and down the hallway to the bathroom and his bedroom. BJ continued to walk in a pool to strengthen his muscles. Quite unexpectedly last year BJ took 16 unaided steps at the age of 18. They were not “falling steps” but very clear, well deﬁned footsteps while he maintained a tall straight body. He was proud of his achievement and the reaction from everyone spurred him on and he has continued to walk around our home with supervision in this manner. It is hard work for him but I am proud of that moment and the fact that we never gave up. PSN: What kind of life do you envision for your child’s future? Or does you child have a dream he would like to reach? JJ: I learned early on not to look too far into the future. I am a worrier so I ﬁnd that I get myself tied up in knots about what the future will hold. BJ has made so many unexpected gains in the last six months that I wouldn’t want to limit him by envisioning too much of his future because hopefully the improvements will keep on coming. My main wish for him is that he
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is happy, healthy and having his needs met. He has just started a post school program that he is thrilled about. He is excited to greet each new day. More than anything I want him to keep this enthusiasm and joy over his day-to-day life. ADVOCACY: PSN: What was your impetus with regards to starting your blog and sharing about traveling adventures with your son and family (Was there a speciﬁc moment that made you decide to take action)? JJ: We returned from our second successful trip to the US in 2012 and I had so much information that I had researched. I asked questions, emailed attractions and airlines to ﬁnd out as much as possible to make our trip smooth. I had found some great accommodations, activities to do and access to information. But, it seemed a waste that only my friends would hear about it. I decided to write about our trip and then it was pointed out to us that we were always doing things, even in our hometown that may be of interest to others, so the idea kept growing. PSN: As a blogger, please share about your advocacy “Have Wheelchair will Travel”. JJ: When BJ was young, I went to an information session at a Cerebral Palsy organization. I started
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talking to a lady who was the parent of a twenty year old with Cerebral Palsy. I was shocked when she said to me “you are so lucky, you just don’t know how much harder it will get. You are in the honeymoon period”. It was an awful thing to hear and I vowed to always encourage other parents to share the positives and the solutions we had found. Have Wheelchair Will Travel is really the combination of my former life as a travel consultant and my current life as a Mom of someone with Cerebral Palsy. I have never lost my love of travel and I feel passionate about making life easier for others and providing encouragement. PSN: Do you have goals, or a mission, you are trying to achieve with “Have Wheelchair will Travel”? JJ: I think there is a residual feeling that people with a disability don’t travel and it is taking a while for the travel industry to catch up to the idea that people with a disability try to live their life without barriers. People now expect that they can do what everyone else does (within reason) and with certain adaptations. I would like to see airlines take greater steps in the direction of making sure everyone can ﬂy. Many people are very limited in their ability to be comfortable, or even sit without the support of their wheelchair seating system. It seems logical, to me at least, that in the future
airlines should be considering having wheelchair seating on their aircrafts. At the moment there are FAA accredited seating systems for children up to the age of 11 but the need doesn’t magically end at 11. This needs to be addressed. We were even surprised on our last trip to Los Angeles to ﬁnd that the new terminal lacked a stand-alone (unisex restroom). If there is a person in a wheelchair needing assistance from someone of the opposite sex (ie mother helping son, husband helping his wife) there is only the option to go into either the ladies or men’s restroom. This is a bad oversight and one which makes a traveler feel self conscious and uncomfortable. In all areas of travel I feel there is a need for education. As we travel we try to educate hotel staff and others (in a positive way) about what is needed and what a difference it can make to us to have our plans work well. We ﬁnd that people are keen to know more when they see BJ enjoying his travel and he is so social he tends to build a good rapport with people and this tends to make them receptive to our ideas. PSN: In conclusion, is there anything else that you would like to share with our readers? JJ: I feel that approaching every situation with a positive attitude is the best inﬂuence you can have on your children. It isn’t always easy, but I notice even when something does go wrong my daughter will say “well at least……” and point out the positive of the experience. I have had down periods, I have been overly tired and feeling like it is all just too hard BUT taking time out either by myself or as a family helps me clear my mind and get back on with day-to-day life. I have been very fortunate to have family support and a Mom who recognizes when I need a break.
fun about Julie
What do you do to ﬁnd time for you? I love the escapism a movie provides so I will head to the movies with my Mom or friends. When I really need a pick me up I have a facial. I arrive at the salon and ﬁnd it hard to stop thinking of all the things I should be doing but very soon the magic kicks in and I am off into a dream like state. Mommy timeout: Dream vacation? Hawaii is my dream vacation. The last time I visited it was before children and our ﬂight was the last to land before Hurricane Inniki hit so I would love to revisit it without the drama. I would love to sit with a cocktail in hand at the beach.. Favorite treat? I love my chocolate. It has been my friend through many a tough time Your one makeup essential? Mascara. I’m totally addicted to mascara and won’t leave home without it. Do you drink Coffee or Tea? English breakfast tea. Are you a dog or cat person?
Lastly, have fun with your child. It will keep them positive and create precious family memories. Y
Having grown up with them as a child, I’m a dog person
PSN: Julie, thank you so much for sharing your experiences with us, as well as the lessons you have learned raising BJ. We look forward to hearing more from the adventures of “Have Wheelchair will Travel”.
Favorite wacky word or phrase? My daughter is a fan of the series Junie B Jones and if I am having a moment of praising myself over something I’ve done for her she quotes Junie B by saying “don’t forget not to toot your own horn” It always brings a laugh.
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IS THE FOUNDATION FOR YOUR CHILD’S
by Douglas Haddad, Ph.D. any parents are in disbelief when their child underachieves at school, especially if they did well throughout their previous school years and then “out of nowhere” their grades take a turn for the worse. There could be a myriad of explanations for why a child lacks motivation in speciﬁc areas of life, including:
a very high level of difﬁculty in the subject matter, a low level of interest, a boring or mean teacher, being smart is unpopular among peers, a feeling of rejection, a feeling of boredom, social distraction, unchallenging academic material. Each child possesses her/his own unique motivations and what one child may ﬁnd to be motivating in school achievement, another discovers in musical accomplishment and yet another realizes in athletic performance. But how can you help bring forth your child’s “spark for life” so he feels motivated to do well in school --- because he truly wants to? First off, kids nowadays are contendingwith so many things that are competing for their attention: social media, peer groups, sports, etc...As a public school teacher, I have formulated speciﬁc strategies for helping children get motivated to achieve at school. I have found these ten successful strategies very useful in helping excite children to want to learn and live up to their potential.
1. Expose a child to new things. - When children see something new or different, this
piques their curiosity and increases their motivation to learn. Examples: Taking a trip to the library to do some research, going outside to do some ﬁeld work, changing up the arrangement of the class for different activities - If it is a potentially boring topic and/or a difﬁcult
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concept to grasp, I use at least three completely different methods of instruction to teach the same concept. Presenting something already learned in a new way can increase interest levels such as reading from the textbook, showing a video, playing an interactive game on the Smart Board, etc.
2. Foster a child’s interest in the classroom. - The child brings in an extra credit assignment on something interesting and related to the topic and presents it to the class. - Have available resources for the student to explore a topic of interest further. - Take children on a virtual or real ﬁeld trip to learn more.
3. Use short-term rewards as an incentive for achievement. - Offer a game day if homework is complete. - Play a game with the students during or after school. - Credit a child effort points for improvement. - Recognize children in different school related areas: character, participation, highest test scores, highest grade point average, most improved, etc.
4. Make connections to real-life applications. - Ask questions applicable such as: “How does this affect you?” “What would happen without this?” “How has this shaped society?”“What would you do in that situation?” - Show how the concepts inﬂuence them either directly or indirectly.
5. Use praise to encourage a child’s efforts. - Use positive comments: “Good job!” , “Your hard work pays off!”,
“Many of life’s failures are people who did not realize how close they were to success when they gave up.” ~ Thomas Edison (American inventor and businessman)
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“I see great improvement. Keep going!” “I am proud of you! - Avoid negative comments: “Can’t you be more like your brother/sister?”
6. Parents can ask their child to teach them about the topic. - You can ask,“What did you learn today at school? Can you please explain that concept for me?” - Children can teach not only verbally, but also through other authentic expressions such as art, music, poetry, acting, and/or writing.
7. Turn a “boring/challenging concept” into a game or friendly competition.
8. Discuss the importance of a topic and how it relates to a child’s interests. - Emphasize the importance to having an appreciation for all things in life. Show how certain things are speciﬁcally interrelated in this world. - Each topic is unique and has its place in learning and understanding our world. My favorite line to spark student interest for the year is:“Science is everything…from the air you breathe…to the bus that brought you to school…to the sound waves hitting your ear drums and the oxygen molecules entering your body, while your heart is beating and the food from your breakfast is digesting….”
9. Encourage visualization of a topic. - Use hands on, interactive multi-media to generate intrigue and better understand more abstract concepts. - Design a short story using analogies to describe concepts. - Create a mini-movie demonstrating concepts. - Illustrate concepts through a slide show or poster presentation.
10. Challenge a child. - A talented and gifted child who is not challenged may become disinterested and channel energies in a wasteful manner. - Provide a child with additional resources to what he is learning in school. - Hold expectations high and allow a child to express creativity and show off his/her skills.
- Create a song or a skit to learn the material. - Research the topic and then have a court case/debate. - Work in groups with friends to design a game or an activity. - Play a review game with students where the winning team receives bonus points on the upcoming test.
“Fascinating. This book should be required reading to teach business leaders that hiring people with disabilities and making innovations in the workplace are both good business and the right thing to do.” TEMPLE GRANDIN Author of Thinking in Pictures and The Autistic Brain
For more information on empowering your child and assisting in their maturation and overall development: Check out Dr. Doug’s ofﬁcial website: www.douglashaddad.comY
O R D E R N OW F R O M YO U R FAVO R I T E B O O K S TO R E .
Douglas Haddad, Ph.D. (“Dr. Doug”) is a public school teacher, nutritionist and the author of parenting/child guidance book Save Your Kids…Now! The Revolutionary Guide To Helping Youth Conquer Today’s Challenges and co-author of Top Ten Tips For Tip Top Shape: Super Health Programs For All Professional Fields..
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The ImporTance of Teaching children Body Safety by Jayneen Sanders
e teach our children water safety and road safety — it is equally important to teach our children ‘body safety’ from a very young age. as both a teacher and a mother, i strongly recommend to all parents that ‘body safety’ become a normal part of your parenting conversation. the sexual abuse of children has no social boundaries and any child anywhere can become a victim. educating your child with body safety skills is an empowering and crucial life-skill that could save them from the irreversible damage of childhood sexual abuse. Before i begin, however, i would like to reassure parents that when teaching your child body safety you will not have to talk about the sex or the act of sexual abuse. Just as we teach road safety with a clear, child-friendly and age-appropriate message, the teaching of body safety uses a similar sensitive and age-appropriate technique. the statistics of 1 in 3 girls and 1 in 6 boys will be sexually abused before their 18th birthday is truly frightening, and as many experts point out, this statistic only reflects reported cases. 95% of children will know their perpetrator. the community’s focus has so often been on ‘stranger danger’ — however, the reality is, the perpetrator will most likely be someone in the child’s immediate family circle and a person they know and trust.
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Worryingly, disabled children are 1.8 times more likely to be sexually abused than non-disabled children (Sullivan et al, 1997). the following factors may help to explain why this is the case. • Disabled children receive intimate personal care often from a number of care-givers and service providers and are therefore more vulnerable to undetected abuse. • Because some disabled children are mentally impaired they have less resistance to sexual abuse and are perceived by the abusers as an ‘easier target’, i.e. the child will be less able to tell and know that the sexual touch is wrong (frankly speaking it may feel pleasurable to them); the child is more likely to believe the abuser when told this sexual behaviour is ‘normal’. • Children may have communication difficulties and/or a reduced or inappropriate vocabulary, and are therefore unable to speak out and let others know of the sexual abuse. • Some disabled children, especially in a care setting, may not have someone they can turn to who is receptive and understanding to what they are trying to communicate. • The child may feel too powerless, intimidated or fearful to communicate what is happening. abusers will use this power to intimate both disabled and nondisabled children alike.
To assist parents, carers and educators, here is a summary of the 10 Key Body Safety Skills every parent/carer/educator should teach both their disabled and non-disabled child. Please note, these skills can be taught gradually and in daily conversations as your child grows.
10 Key Body Safety Skills
Boy Body Parts mouth chest
1. Ensure your child names their body parts correctly as soon as they
begin to, e.g. toes, nose, eyes, etc. Children should also know the correct names for their genitals from a young age. Try not to use ‘pet names’. This way, if a child is touched inappropriately, they can CLEARLY state to you or a trusted adult where they have been touched.
2. Teach your child that their penis, vagina, bottom, breasts and nipples
are called their ‘private parts’ and that these are their body parts that go under their swimsuit. Note: a child’s mouth is also known as a ‘private zone’.
3. Teach your child that no one has the right to touch or ask to see their private parts, and if someone does, they must communicate to you, a trusted adult or older teenager straightaway. Reinforce that they must keep on telling until they are believed (statistics tell us that a child will need to tell three people before they are believed). As your child becomes older, help them to identify five people they could tell. These people are part of their ‘safety network’. 4. Teach you child very clearly that if some-one (i.e. the perpetrator) asks
them to touch their own private parts, shows their private parts to the child and/or shows them pornographic images that this is very wrong, and that they must tell a trusted adult (or older teenager) straightaway. Reinforce that they must keep on telling until they are believed.
Girl Body Parts lips arm waist
5. Talk about feelings at the same time as you are discussing
inappropriate touch. Discuss what it feels like to be happy, sad, angry, excited, etc. Encourage your child in daily activities to talk about their feelings, e.g. ‘I felt really sad when … pushed me over.’ This way your child will be more able to verbalise how they are feeling if someone does touch them inappropriately or they are shown inappropriate images.
6. Talk with your child about feeling ‘safe’ and ‘unsafe’. Discuss times
when your child might feel ‘unsafe’, e.g. near a growling dog; or ‘safe’, e.g. snuggled up on the couch reading a book with you. Children need to understand the different emotions that come with feeling ‘safe’ and ‘unsafe’. For example, when feeling ‘safe’, they may feel happy and have a warm feeling inside; when feeling ‘unsafe’ they may feel scared and have a sick feeling in their tummy. Help them to verbalise these feelings so it is easier for them to express their feelings if they are in any way violated.
7. Discuss with your child their ‘early warning signs’ when feeling
unsafe, i.e. heart racing, feeling sick in the tummy, sweaty palms, feeling like crying. They may like to come up with some ideas of their own. Because your child may be with a variety of people in any given day, MAR/APR 2014
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must be in the room). Discuss with your child that if someone does touch their private parts (without you there) that they have the right to say: ‘No!’ or ‘Stop!’ and outstretch their arm and hand. Children (from a very young age) need to know their body is THEIR body and no one has the right to touch it inappropriately.
10. Read your child ‘Some Secrets Should Never
“The strategies employed by offenders to gain the compliance of children more often involve giving gifts, lavishing attention and attempting to form emotional bonds than making threats or engaging in physical coercion. Many sexual encounters with children were preceded by some form of non-sexual physical contact.” (Smallbone & Wortley, 2000)
ensure they learn to trust these ‘early warning signs’ and to ALWAYS act upon them. Tell your child that they must tell you if any of their ‘early warning signs’ happen in any situation. Reinforce that you will always believe them and that they can tell you anything.
Be Kept’ on a once a month or once every two months basis. The book can be read and reread to children 3 to 12 years. It is also ideal to read before camps, sleepovers, hospital visits, etc. Go to www.somesecrets.info for more information and purchasing details. Also teach your child the empowering ‘The Body Safety Song’ at http://somesecrets.info/body-safety-song/ Lastly, sexual abuse prevention education (body safety) is not only a parent’s responsibility, but also the community’s responsibility. Ask your child’s kindergarten or elementary school if they are running such a program. If they are not, ask why not. And please lobby for it.
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8. Discourage the keeping of secrets. (Perpetrators rely heavily on children keeping secrets and may begin by asking your child to keep ‘fun’ secrets in order ‘train’ them into keeping all secrets.) Talk about happy surprises such as not telling Granny about her surprise birthday party and ‘bad’ secrets such as someone touching your private parts. Make sure your child knows that if someone does ask them to keep an inappropriate secret that they must tell you or someone in their ‘ safety network’ straightaway.
9. Discuss with your child when it is appropriate for someone to touch their private parts, e.g. a doctor when they are sick (but making sure they know you
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Jayneen Sanders (aka Jay Dale) is a teacher, author, mother of three teenage daughters and an active advocate for sexual abuse prevention education both in the home and in schools. She is the author of the children’s picture book on this topic ‘Some Secrets Should Never Be Kept’. For more information on sexual abuse prevention Visit: www.makeyourmarklearningcenter.com education, Jay’s book and accompanying Teacher’s Pack go to www.somesecrets.info Now available on Amazon in 7 seven languages.
WHAT IS Phelan-McDermid Syndrome? What is Phelan-Mcdermid Syndrome? Discovered just over two decades ago, PhelanMcDermid Syndrome is a highly under diagnosed genetic form of autism that is caused by the deletion of part of chromosome 22 or by a mutation of the SHANK3 gene or other related genes. The ﬁrst cases were identiﬁed in 1992 by Dr. Katy Phelan and it initially was called 22q13 Deletion Syndrome. Within a few years, Dr. Phelan and other researchers identiﬁed less than two dozen cases of the syndrome, but that number has now grown to more than 1,100 individuals worldwide who are diagnosed with PMS. In most of the identiﬁed cases, the condition is not inherited from parents but results from a spontaneous genetic mutation. The size of the deletion is highly variable and has a direct effect on an individual’s disability.
How is Phelan-McDermid Syndrome Diagnosed? Array comparative genomic hybridization (CGH), also called microarray, is the most common method for diagnosing PMS. Larger deletions can also be detected using ﬂuorescence in situ hybridization (FISH) or chromosome analysis. If a diagnosis of Phelan-McDermid Syndrome is suspected, but no deletion of 22q13 is detected through CGH, DNA sequencing may
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detect mutations of the SHANK3 gene or other related genes. Besides deletions of parts of the chromosome, PMS can also be the result of a ring mutation, translocation of genetic material and other mutations. All can be detected from blood samples as well as from skin cells or cells used for prenatal testing.
What are some common characteristics? PMS involves a variety of developmental delays. Keeping a close eye on when—or if—your child is hitting the key social, emotional and cognitive milestones is an effective way to spot the problem early on. Some of w tthe telltale signs are ﬂaky toenails; large, ﬂ ﬂeshy hands; prominent ears; droopy eyelids; long eye lashes; full eyebrows; poor muscle tone and increased tolerance tto pain. A number of individuals have seizures and anomalies of the spine. Many chew often on non-food items such as clothing, bedding and toys. Listen to your instincts. Some bite themselves or excessively ﬂap their arms when excited. If they’re telling you something is wrong schedule an appointment with your doctor or ask for a referral to a child development specialist.
Phelan-Mcdermid Learning Stratgies Individuals diagnosed with Phelan-McDermid Syndrome will face learning challenges. Assistive
Enter Parenting Special Needs Magazine technology can help your child learn material in a way they can understand it. IPads and similar devices can help improve communication skills, increase social interaction and help your child build a better understanding of their environment. An Individual Education Plan (IEP) is a working document that should be developed, implemented and monitored in a collaborative manner with you, your child’s teachers and therapists.
Whom should I consult if I suspect? The Phelan-McDermid Syndrome Foundation (www.pmsf.org) was established in 1998 and is today the leading organization for support and information about PMS. PMSF serves families by funding research and maintaining a global network of communication with our members. One of the main PMSF initiatives was the development of a web-based International Patient Registry. By participating, families are engaging in the quest for a cure. With more than 200 questions related to the features of PMS, the Phelan-McDermid Syndrome Foundation has created the most comprehensive database of information about diagnosed individuals. The registry also allows researchers to access anonymous information about those with PMS for scientiﬁc studies. The registry also allows the PMSF to contact families to invite them to participate in clinical studies and clinical trials. In July 2014, the PMSF family will once again gather in Orlando, Fla., for our ninth International Family Conference with the theme of “Embracing Today, Empowering Tomorrow”. Presenters will discuss topics ranging from the latest advances in assistive technology to scientiﬁc research developments and what breakthroughs might lie ahead. And, of course, family togetherness and support is a huge component of the conference. Sometimes, just sharing life’s toughest experiences and biggest victories can make all the difference. Y
“Mom & Me” Cover Contest for our May/June Issue One Lucky Winner will appear on the Cover of our May/June 2014 Issue!
agging Prize: br gifts lus rights p t $150. valued a 15th
5- April March 1 mmer
Su Theme: ity & Mobil
En Enter E ntte ter ccontest ter ontest by ssending image to: firstname.lastname@example.org Remember to include name and age of child and put “Mom & Me” in email subject line.
GET CONNECTED: Families can get connected by registering with Phelan-McDermid Syndrome Foundation. Go to www.pmsf.org and click on the Membership link or contact Jack Sweeney at email@example.com for more information. TIP: Magazine cover is vertical (portrait)in layout. Please don’t compress images (large 708KB or actual size 2.6 MB). Must have and include permission from photographer for copyrighted images.
your life spring cleaning
NUKE the Sponge or Dish Cloth
Bye Bye Germs
Go Green Indoors
Clean Indoor Air Want to purify your indoor air…try the natural way. Get a plant or two. They not only add color and design to any space, but also work to improve the air quality and even your mood. It is said that a single Boston fern can absorb 1,863 micrograms of formaldehyde per hour. They are easy to maintain and are very resilient. ©bﬁshadow/ﬂickr.com
Nuke the Sponge: We all know that sponges can be a breeding ground for bacteria. Disinfect yours every night by squeezing it out and microwaving it on high for a minute. When it’s shredded and smelly, replace it. A dirty rag contaminates any surface it touches, so if you eat off one of those surfaces, you can fall ill.
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Clean Produce Naturally Everyone wants clean produce, but cleaning methods vary. Baking soda is a natural element, inexpensive, and easy to ﬁnd. Baking soda is a biopesticide, which inhibits the growth of certain bacteria, fungi and viruses. This goodole-fashioned home remedy can be used for most fruits and vegetables. For example: when baking soda is applied to a damp apple, your ﬁngers can then do the work to remove waxy buildup, germs and other not-sotasty substances.
Not just for your Fridge
Mommyâ€™s Timeout : T ake k a time i out and use V isualization Meditation to relax. Picture yourself here amongst the beauty of spring at the Buchart Gardens. Experience nature Take a couple of deep breaths and begin to let go of any stress. Butchart Gardens Sunken Garden located on Vancouver Island Victoria, BC Photos courtesy of ÂŠ Via Flickr: Lnk.Si Music courtesy Ryan Judd www.TheRhythmTree.com
breathing space your life
by Cynthia Carr Falardeau
y advocacy began, like many other parents, before my son was born. I was diagnosed as a “high risk” pregnancy. My list of complications rivaled the national debt. At the time, I believed I just needed to be organized. Forgive me for dating myself, but I thought if my Franklin Planner detailed my strategy, then threats to my happiness would be at bay. After all….bad things only happen to unorganized people…right? My sense of center was about to be scrambled. I had no idea that it was less about structure and more about utilizing my resources. My deﬁnition of perfect was about to be drop-kicked to outer space. I no longer dreamed of perfection. I wanted survival. I needed friends. I longed for positive and encouraging advice. But where, oh where, was I to ﬁnd this in my remote and costal town on the eastern shores of eastern Florida? So I did what anyone would do….I logged into the internet. Full of hope, I found the most disheartening of “friend-i-me’s”. At ﬁrst we had so much in common and it felt so right. Then, like a bad date, it was clear we were done. I had hoped for positive solutions. I wanted new ideas to navigate the challenges before me. Instead, I found parents with foul mouths. Their language was layered with “uck” words. If only
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their love for creating verbs with “u-c-k” were as passionate as their intent to help their child….they would have been Olympians for change. Instead, and sadly, I found them stuck in their own demise. Determined to ﬁnd others who could offer support – I pressed on. This was all before Facebook and Twitter. I thought I could ﬁnd groups in my small hometown. I still believed that somewhere, between the newly wed and the nearly dead, I could ﬁnd a group of Mom’s like me. In the twenty fourth week of my pregnancy my search was interrupted. My water broke. In the middle of the night I was sent 150 miles away without even the comfort of wearing my own underwear. I would spend 9 weeks hanging on in an Orlando hospital. I think I learned more about advocacy and ﬁnding support there. After multiple surgeries, oxygen and heart monitors – I wanted one thing - my mother. The harsh reality was that she had passed many years before. Despite the love of my husband, I longed for the kindness of other women. The hospital chaplain asked me to help to start a support group on the anti-partum ﬂoor. The truth is that I gained more than I gave. I learned that having commonalities really meant nothing. In fact, I learned more from women
who were different than me. The rich diversity of experiences and backgrounds gave me new perspectives. I am also not ashamed to admit, my gratitude perspective, totally changed. My son arrived home three months later. Somehow, I wanted to embrace my suburban roots, and talk to other Mom’s about Pottery Barn decorating and creating the ultimate nest for my bundle of joy. However, I found that others were uneasy about my presence. They really did not know what to say about his bandaged arm. Discussing his amputation and false alarms in the middle of the night made them uneasy. Feeling alone and scared, I decided that I had to return to my antepartum roots. I had to carve out my own support network. It was not something that anyone would send or deliver to me. I had to take charge and forge my own system to ﬁnd encouragement and strength.
Here is what I did to develop my support network without my mother and a big city full of resources:
Make Yourself Whole: You have to ﬁnd a way to balance all of your emotions. The ﬁrst step of advocacy is feeling strong and centered. I found two methods: an intergenerational Bible Study Mom’s group and a regular work-out group. You, and only you, can determine the best ﬁt. Be Open Minded: Don’t get mired down in the details. If your child has a speciﬁc diagnosis, don’t feel like you have to “join” that group.
A lot of raising children with special needs is all the same.
Draw on the Positive: Just as I shared that I did not want to chat with parents on-line who lamented about all that “ucked” about their situation – I also did not want to associate with them. Negative energy just creates more nonproductive processes. Find people who will listen, be caring and encourage you towards new solutions.
Write or Speak about your Experience”: One of the things that motivated me to write about my journey was that most of what was out there was either “ﬂuffy” or “mad. I believed that there were other parents, like me, who were caught in the middle.
Lead the Team Effort: I started to ask school leaders, community leaders and parishioners to be on my “team.” The truth is that everyone wants to support a winning cause. Through my baking of cookies, I asked different leaders, if they would join my team to support my son’s education. Although I would like to believe it was my confectionary talents – I truly know it was about their enthusiasm for cheering on our son to success
The bottom line: You have the power to control your child’s destiny. You don’t have to wait for a support group to form. You just have to take the positive energy in your heart and galvanize it in such a way that it becomes a catalyst for change. You, the parent, have the power to be your child’s Super Hero! Y
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Improving Participation in Community Activities by Meme Hieneman, Erin Buckalew, & Paul Rogers
hildren with disabilities and their families often become somewhat socially isolated, picking and choosing the places they go, people they see, and things they do. This may be because community outings tend to be unpredictable and some outings (e.g., trips to the doctor) may be associated with unpleasant experiences, leading to anxiety and avoidance. Over time, this narrowing in participation in inclusive activities can lead to boredom, frustration, and even resentment. This article will describe strategies to help children explore and experience a wider array of community activities, thereby creating greater fulﬁllment in life.
Steps for Community Participation Identify places and activities. It is important to select community activities thoughtfully. The goals are enjoyment and participation for everyone. Therefore, choose activities both the children and parents will ﬁnd to be fun, engaging, and not-too-challenging whenever possible. It is also important to determine the best times or dates (e.g., when the environment is less crowded, child is likely to be well-rested) to go.
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Determine expectations. Before embarking on the outing, ﬁgure out what exactly occurs and how people tend to behave in order to participate in the activity. Set goals based on your child’s current abilities (e.g., sit quietly and observe for 15 minutes, participate by selecting 5 items). Start small if necessary to increase the likelihood of success. Prepare your child*. Explain the activity to your child, answering the following questions: Where are we going? Who will be there? What will we be doing and/or what will be going on? What can the child do if he feels uncomfortable (e.g., say or sign “stop”)? How you will help him be successful? It may be helpful to role play or use pictures to illustrate. Support participation. When you go on the outing, assess the circumstances to determine if additional guidance or adjustments to your plan are necessary. Prompt your child to participate according to your goals, and also to communicate if he needs more support. Exit on a positive note. If your child participates successfully and meets the goal you have established, praise him and leave. If he communicates discomfort appropriately and you are unable to change the circumstances to meet
his needs, thank your child for expressing his needs and allow him to exit. Reward community participation. Although the activities you choose may be fun, participation in unpredictable or complicated activities may be challenging for your child. Therefore, reward successful outings to new circumstances with activities or items your child likes (e.g., video game or special snack when he returns home). Increase expectations over time. Gradually demand more of your child (e.g., to stay longer, participate more fully) and reduce the support you provide. Part of this is ﬂexibility training – learning to respond to unanticipated circumstances and be a little adventurous.
Jack and Elaine in the Community Jack wanted to have friends and participate in his community, but was rarely successful in social groups – often demanding to leave after only a few minutes. His support providers helped Jack choose a new activity, Geocaching (i.e., treasure hunting using a GPS), that would he would ﬁnd entertaining. They practiced at home and role played how to initiate conversations and then began supporting him through smaller events. As Jack learned to participate independently, they faded their support. Jack has now been to over 100 meet-ups and has developed friends among the geocachers. Elaine’s mother wanted to her to participate in grocery shopping, but Elaine commonly had meltdowns in the store. With the help of her behavior
analyst, Elaine’s mother ﬁgured out that Elaine was getting upset because of the number and variety of desirable items present that she could not have. Therefore, they started learning to shop by going to department stores (i.e., clothes were not as enticing to Elaine). Once she learned to shop, they shifted to convenience stores and then the grocery store. Elaine was rewarded for her participation with small treats available at the register.
Conclusion: Dos & Don’ts In conclusion, participation in community activities can be successful and contribute signiﬁcantly to children’s and families’ quality of life with sufﬁcient support. Here are some dos and don’ts to make the outings as positive as possible:
Seek out new experiences
Surprise them (at least initially)
Plan ahead and prepare your child
Expect success without teaching
Have an exit strategy (“safety valve”)
Blame yourself if things go wrong
Expect more of your child over time
Give up on community outings
Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.
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SUMMER CAMP:Summer Fun It is perfectly normal, as the parent, to worry or have some concerns about sending your child to summer camp for the ﬁrst time. You may wonder how other children will react to your child’s disability. You may not feel conﬁdent that counselors understand and can respond to your child’s special need. You may even feel as if you need to sign up for summer camp also because he/she cannot do it alone. You can alleviate your worries by learning about the innumerable camps just for special needs that will suit your child. Among these special needs camps, each will have a different mission statement and goals. There are so many to choose from. First, sit down as a family and make a list of what qualities in a summer camp are most important to you. Some ideas to consider are: location/distance from home, length of the session, cost or if ﬁnancial assistance is offered, religious afﬁliation, counselorcamper ratio, credentials of the staff and whether parental visitation is welcomed. The next step is to call the camp and ask to speak to the director. Ask any questions you may have and if you remain interested, request literature to be mailed to your home. If possible, plan a visit. If a visit is not going to be possible, see if you can connect your child with a former camper or speak to a parent yourself.
experience. Is the goal for the child to learn social skills, reading skills, or some sort of physical skill (e.g. playing baseball, riding a bike, etc…)? A critical skill that children should learn is swimming. For children on the autism spectrum one of the leading causes of death after seizures is accidents. One of the most frequent accidents is drowning. The American Red Cross offers swimming lessons at local community pools that cater to a wide range of ability levels. Some courses are speciﬁcally geared toward individuals with disabilities known as adapted aquatics or adapted swimming lessons. Check with your local Red Cross Chapter for a swimming program near you. A special need camp may mainstream children with and without special needs, target a speciﬁc special need or tailor to many special needs. Make the selection process and decision a family event where your child is a full-ﬂedged participant. Both you and your child should feel secure and excited about summer camp. Remember that your child will pick up on your attitude or fears, so make sure you give off a positive message.
While deciding on a camp, decide what skills a child will hopefully (and helpfully) learn from a summer
If you are considering a camp, it is advised to ﬁnd out the rating it received from the American Camp Association (ACA). Local branches of organizations focusing on disabilities like Easter Seals or the Autism Society may be able to offer information about camps that will be close to home. Remember, your child has the potential to have an incredible experience at summer camp. With summer around the corner, now is the prime time to start planning camp. The experience will create memories that will last a lifetime. Y
Check out these Special Camps --->
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© Photo courtesy Smuggler Notch Adpative Program
ummer camp should encourage the potential for new friendships, outdoor adventures, swimming, hiking, games and general fun. When you choose the right camp, it can provide all that and more. As your child grows and becomes independent, his self-esteem will increase, too. Having a special need is not an excuse to miss out on the fun.
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amp Lee Mar just celebrated its Camp Lee Mar also has a therapeutic horseback riding program, a Zip Line 61st season this past summer and overnight trips. The facilities – a real milestone! Camp Lee are exceptional, highlighted by the Mar actually celebrated a number super-popular Junior Olympic heated of milestones in 2013. Ari Segal, the pool and air-conditioned buildings camp’s owner/director, celebrated his (including cabins). Camp Lee Mar 21st season. Academic coordinator holds many special events each Laura Leibowitz celebrated her 31st and assistant director Lynsey Trohoske summer: the 4th of July celebration, Western Night, Hawaiian Night, celebrated her 16th. Wow! Camp Lee Carnival Day and Olympics, to name Mar’s unique program combines all just a few. The senior division campers the fun traditional camp activities talk all year about Social Dance, which – basketball, kickball, boating & we have every weekend, followed by ﬁshing, soccer, arts & crafts – with by Donna B. Wexler, MA,Fling CCC-SLP the Senior (Prom), which takes academics, speech & daily living skills.
Fun, traditional summer camp activities Caring, nurturing staff Academics Speech & language therapy Daily living skills
place in early August. In December, we launched our new website, as well as our facebook page. Please visit both. The hallmark of Lee Mar’s program is an incredible, nurturing staff, all dedicated to working with children with special needs. Camp Lee Mar is truly “A special camp for special kids.” Ari also directs The Guided Tour, Inc., a supervised vacation program for adults (17 & up) with developmental challenges. 2014 marks The Guided Tour’s 42nd year! Both programs can be visited at www.leemar.com and www.guidedtour.com.
Teenage campers enjoy weekly social dancing with end-of-summer “Prom” Optional trips during the summer Exceptional facilities including air conditioned bunks and buildings Junior Olympic heated pool
SUMMER CAMP Experience by Jim Hasse
ere are snippets of my mother’s published writings between 1956 and 1958 about how we both grew in self-confidence (she as a mother and I as a child) through my summer camp experiences. “… I was the mother of one of those wonderful, but baffling, noisemakers called a boy. Jim seemed wellrounded and secure as long as he was at home. The moment he was taken away to visit, or found himself involved in a party, he became oversensitive, shy, and cowered at the sight of strangers. The halo he wore so well at home slipped when he was exposed to the social side. He became weepy, unsure, and just wanted to go home. In spite of all of our efforts, I could see that Jim was growing ill at ease among people. Even though he was involved in a classroom situation within a “special” school for children with disabilities, he was missing out on the social side of school. We had to face it. In spite of having frequent, small groups of guests in our home, our seven-year-old was not becoming socially adapted. So we sent him to camp …” ”Through our Easter Seals clinic, we arranged to have Jim spend a two-week period at Camp Wawbeek, Wisconsin Dells, WI.… When I looked ahead at the two weeks of camp life for Jim, I wondered how I would survive without him during that period. Then I realized my greatest fault: I had a tendency to become over-protective. I was molly-coddling Jim into fearsome insecurity. Jim was becoming the person who might have trouble adjusting to the hard world...I had to do it – send him to camp”. “… Camp experience proved to be stimulating for both of us. Sometimes parents are so close to their son that they cannot see him. To get an overall picture of your child and his challenges, you must get away.”
50 years later, these are the highlights I now recall from my camping experience: • DISABILITY CULTURE: One of our camp counselors helped us discuss whether we liked being called “handicapped”.We found ourselves brainstorming about alternative terms after learning about the historical context of “handicapped”. • GRATITUDE: I learned how to write a “thank you” note to my sponsor. • EXPANDED INTERESTS: In addition to pool time, picnics and hikes, I dabbled in ceramics and photography – activities not available at home or school. • ACCEPTANCE: My roommate, who also had CP, believed in flying saucers (which I thought was a little strange), but he became my best buddy outside of grade school. • FREEDOM: I felt free for the first time to function within an accepting community without the stigma of being disabled or the structured routine of the classroom. • CONFICT RESOLUTION: While working on the camp’s newsletter, when I was 15, I had to handle an accusation from a fellow volunteer that “I was not pulling my weight”. I now believe my 10 years of camping experience between 1950 and 1960 turned out to be key stepping stones on my way to a meaningful career.w Jim Hasse, founder of cerebral-palsy-career-builders.com (the careercoaching guide for parents of CP youngsters) is an Accredited Business Communicator and Global Career Development Facilitator. He has CP. See http:// www.cerebral-palsy-career-builders.com/self-confidence-stories.html Copyright © 2014. Hasse Communication Counseling, LLC. All rights reserved
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How Mom and I Grew in Self-confidence through my
PARENTING SPECIAL NEEDS // SPECIAL ADVERTISING SECTION
National Ability Center Summer Camp Discover The Possibilities
N THE MOUNTAINS OF 0ARK #ITY 5TAH 4HE National Ability Center offers camps packed with fun, adventure, and activities that challenge individuals to discover new abilities, expand social connections and make lasting friendships. An easy 45-minute drive from Salt Lake International Airport, the National Ability Center is set on a beautiful 26acre ranch where campers have the opportunity to try indoor climbing, therapeutic horseback riding, challenge course, canoeing, paddle boarding, cycling, archery, swimming and more. The caring, well-trained and enthusiastic staff help campers explore their abilities through structured recreational activities. Campers
A SUMMER OF POSSIBILITIES PARK CITY, UTAH Spring and Summer Camps at the National Ability Center welcome all populations, from children age six on the Autism Spectrum to teens with Diabetes and young adults with physical disabilities. Campers learn new skills, gain independence, build friendships, and discover the possibilities of summer.
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develop recreational skills in a safe and encouraging environment designed to foster growth, encourage independence, and build friendships.
The National Ability Center Working with all populations and empowers individuals of all ages, the National Ability Center provides abilities by building selfcamps for a wide range of abilities; from children as young as 6 on the autism esteem, conďŹ dence and lifetime spectrum, to teens with diabetes and skills through sport, recreation young adults with physical disabilities. and educational programs. The National Ability Center also encourages families to recreate together .ATIOANAL !BILITY #ENTER by offering camps speciďŹ cally for siblings For more information, camp dates or with and without disabilities to enjoy the to register, visit www.discovernac.org same activities. Summer camps run June or contact Camps & Custom Groups 9th through August 20th with a variety Supervisor, Andrea Thompson TRS, CTRS of day camp options for youth ages 6 at firstname.lastname@example.org or through 18 as well as overnight camp 435.649.3991 x 607 options for teenagers and young adults.
15%34)/.3 Parents Should Ask when Choosing a Camp
s summer vacation gets closer, many parents make the decision to send their children to summer camp. While some families have already decided on a camp, others are still exploring their options. The American Camp AssociationÂŽ (ACA) recommends that parents ask questions to get a better feel for which camp experience best suits their child. Here are a few questions to consider: 1. What training do counselors receive? â€“ At a minimum, camp staff should be trained in safety regulations, emergency procedures and communication, behavior management techniques, child abuse prevention, appropriate staff and camper behavior, and speciďŹ c procedures for supervision.
2. How does the camp handle special needs? â€“ For a child with special requirements, parents should ask the camp director about needed provisions and facilities.
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Is there a nurse on staff? A designated place to store insulin or allergy medicine? Are special foods available for campers with restricted diets? Every question is important.
)S THE CAMP ACCREDITED BY THE !MERICAN #AMP Association? Why? Why not? â€“ ACA-AccreditedÂŽ camps meet up to 300 health and safety standards. This does not guarantee a risk-free environment, but itâ€™s some of the best evidence parents have of a campâ€™s commitment to a safe and nurturing environment for their children.
7HAT ABOUT REFERENCES â€“ Parents shouldnâ€™t be afraid to ask for references. This is generally one of the best ways to check a campâ€™s reputation and service record. To read a more complete listing of questions and answers, please go to: Camp Questions
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New York Institute of Technology (NYIT) Introduction to Independence (I to I) Program
he Introduction to Independence (I to I) Program is a seven week summer bridge program for students ages 16 years old and up, that is designed to help them transition from high school to post-secondary education and independent living. Students in the I to I program have neurologically based learning disabilities or are higher functioning on the autism spectrum. Students live in a NYIT residence hall on the Central Islip campus in suburban Long Island, NY. They eat in the NYIT cafeteria and take classes on the CI campus. The goal of the program is to habituate the student to living independently in a college like setting. During the day students will work in an internship 3 hours a day - 4 days
a week for which they are paid a small stipend. Course instructors use that stipend money to teach the students critical independent living skills like budgeting, banking, and checking. Fridays in the program are dedicated to travel training, an important independent living and vocational skill. Students take the Long Island Rail Road (LIRR) into Manhattan where they learn to use NYC subways, buses, trains and ferries all while visiting popular tourist attractions. The NYIT Introduction to Independence (Ito I) Program accepts funding from local school districts for those students who have extended year services. Please plan on attending our Open House Saturday April 5, 2014 at 10:00 AM at our Central Islip location.
To Maximize the potential of individuals with learning differences by: Teaching skills and strategies, and Providing the support necessary for successful and independent lives.
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NEW YORK INSTITUTE OF TECHNOLOGY
PHYSICAL FITNESSand the IEP
by Eric Chessen, M.S., YCS
Image courtesy Facebook
am happy that this issue of PSN focuses on IEPs, because I’ve recently had the opportunity to scour through a few. The purpose of an IEP, by deﬁnition and design, is to incorporate a studentcentered curriculum, or elements of a curriculum, that make sense for him or her. With physical ﬁtness and Adaptive PE, I’ve argued, and continue to argue, that the curriculum as a whole does not make sense, limiting the potential growth and skill development for the individual. Allow me to elaborate. My 11-year old athlete Nate is a shining example of when a highly adaptive (motivated) individual comes into contact with crud-level programming. In his PE curriculum, Nate engages in competitive games with neurotypical peers. He’s eager to play and is one of those kids who just wants to make you (the instructor or adult in charge) happy. This will likely change when he hits adolescence, but for now it is delightful. Nate has some signiﬁcant gross motor issues from lower body strength deﬁcits to upper body strength deﬁcits and poor stability in the trunk. This is typical of my Autism Fitness athletes regardless of their adaptive or cognitive abilities. While he does want to participate in the competitive games, Nate processes the rules, in-
action decisions, and ﬂow of the activity much slower than the other students. So, despite the fact that he is around the other students, he’s not getting much out of the activity itself. This is a common misconception; you can immerse a student in any given environment, but they won’t learn by osmosis without the prerequisite skills. To say “Well, the class is working on kickball, tag, etc.” does not necessarily lead to the conclusion that the student is either developing the skills necessary to participate OR participating in a meaningful way. They could just be standing there. Standing there is standing there, it is not skill development. I can stand in a bank all day; it doesn’t put anything into my savings account. I was asked by Nate’s mom to look over his IEP for Phys Ed. All of the goals were related to competitive activities for which he did not have the foundational skills. Of course, in his “Mastered Goals” section, some of the skills, for example, throwing a ball back and forth x number of times, were checked off. I don’t know what their criteria for mastery were, but it was certainly looser than what I would accept. Not because my standards are outrageously stringent, but the very concept of mastery requires the skill to be performed independently and then generalized to other environments. Otherwise, it does not help the student, it is simply checking something off on paper.
Speciﬁcally for IEPs, Physical Fitness and Adaptive PE goals should follow a hierarchy: Foundational Movement Skills D Motor Planning (putting 2 or more gross motor movements together) D Selection of Activity (Active Play and Creativity) D Social Skills within PE Programming 42
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fun fitness health & ﬁtness Those social skills can be cooperative or competitive but it has to make sense for the individual. Think of it from a long-term perspective as well. If we take the time to develop basic movement skills (pushing, pulling, squatting, crawling, yes, crawling, jumping, climbing) that generalize to other situations, there is a greater likelihood that the student will be able to engage in new physical activities and she may just try new things on her own (initiative and creativity). How long, realistically, are most kids (any kids) going to play sports? The numbers dwindle into the single-digit percentages by high school and that, my friends, is for the neurotypical population. The point is that the entire PE system is backwards and caters to the minority (those kids who do enjoy and are adept at sports), with many (not ALL, but many) Adaptive PE programs attempting to mirror general PE programs. Sports and competitive games are not bad; they simply are not the only options, and most often an inappropriate basis for formulating an IEP. If the concepts of “teams, winning/losing, points, time contingencies, and offense/defense” are too abstract for a student, why build goals around participating in such an activity when there are certainly more important and reinforcing options? Socialization is an important component of ﬁtness/Adaptive PE programming, but not at the expense of actual physical development and not when there is no meaningful social interaction occurring. Since social skills (reciprocity, conversation) are often a deﬁcit for the ASD population, it does not make a wallop of sense to develop these skills while so much else is going on; “Pass the ball to Kelly! No, now the other way! Look at Kelly! Now look at Chris…” Here’s my math example: we wouldn’t expect a group of students who have not yet taken algebra to be ready for calculus. Yet we’re doing this with PE/APE because of the overwhelming misconception that kids will just know how to move naturally. The abundance of studies demonstrating a high rate of gross motor deﬁcits in the young ASD population refutes that, as does the steady eradication of recess coupled with the signiﬁcant anecdotal data that young individuals just do not go out and play anymore. There is some brightness here, promise. What I want to leave you with are some questions that should absolutely be brought along to an IEP meeting when it
relates to Adaptive PE, Gross Motor skill development, or anything movement based:
1) What are the general and speciﬁc goals? Why were they chosen?
2) How are current skills being tested? In how many settings? By whom?
3) What are the criteria for mastery/ independent performance?
4) Does he/she enjoy the programming? What is the most reinforcing activity for them?
5) I think the following are life-skills that could be improved through better physical ability __________. Can we focus on some of these?
6) *Bonus*: What can we do at home to further develop and generalize these skills? An IEP is a strategy for helping the student to develop the skills he or she needs to succeed, and ﬁtness should be no less a concern than any other academic or life skill. Through intelligent, creative, and individuallycentered programming, students with ASD and related disorders can thrive in physical education settings and beyond. They can take the skills they develop, including social aptitude, self-esteem, and in some cases, better cognitive processing and behavioral control, to new places, including right at home. Y Eric Chessen, M.S., YCS Eric Chessen, M.S. is the creator of the PAC Proﬁle Assessment Toolbox (www.PACProﬁle.com), PAC Proﬁle Workshop series, and consults with special needs programs around the world. Available on www.Autismﬁtness.com
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by Christina Bartlett, RD, LD
ne question I hear all the time is, “What is the best diet to follow”? My answer is, “None of them”! Dieting is not the answer; changing your lifestyle, through behavior modiﬁcation, is what leads to long-term results in your health. Habits are formed out of repetition, whether it is a good habit or a bad habit. It’s unrealistic to think that you will change a positive, life-changing habit overnight or even in a few weeks. The logical step would be to evaluate your current eating and exercise habits to see where improvements could be made. Once you have made your list, decide which habit will be the easiest to start with and go from there. Only change one or two habits at a time. It surprises me that many people don’t do this ﬁrst. They would rather try the latest fad diet they heard from a friend, doctor, nurse or personal trainer. They then proceed to make many changes in their eating habits, all at once. They clean out their pantry and fridge and strictly purchase only the foods allowed on the diet. During this process, they have deprived themselves from reality.
Reality is: Your body needs to consume a wide variety of food at each meal. O You are allowed to consume any food you would like to have. You must pay attention to the portion size and how often you are consuming it (everything in moderation). O Consume a minimum of three balanced meals. The deﬁnition of fad is: something that is very popular for a short period of time. I am hoping that you think of your life and health as more than just a fad. Your health should be your number one priority, not the number on the scale. Pay attention to all of your numbers: blood pressure, lipids (cholesterol, HDL, LDL Triglycerides), blood pressure, blood sugars and waist circumference. Since fad dieting is temporary, you will see temporary results. Fad dieting will promote weight loss, but what do you do when the diet is over? Do you keep repeating the diet or go back to eating the way you were? Basically, these are your two choices. Why? The ‘diet’ is not designed for you to consume your entire life. O
How to spot a fad diet: O
Promises quick weight loss. - The truth: When you try a fad diet, you will likely lose pounds in a matter of days as promised since you will be
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eating a very restricted diet. Unfortunately, most of the weight you will lose is just water weight. Once you stop the diet and resume your normal lifestyle, chances are that you will gain the weight back, sometimes with a few additional pounds. O Structured plan with extremely limited food choices. - The truth: This may disrupt your metabolism. This may go against your body’s natural pattern. You may be placing your body into starvation mode. This is a negative side effect that may last long after the diet. O Elimination of certain food groups. - The truth: Eliminating food groups can lead to serious nutritional deﬁciencies. Some of the deﬁciencies may lead to muscle loss. An inadequate amount of calories and macronutrients (carbs, protein and fat) can have long-term effect on your health long after the diet. O You have to purchase supplements and/or food from the promoter. - The truth: Instead of spending a lot of money on supplements and food you may not like, spend money on a variety of healthy food. This would be money well spent. O It’s a miraculous discovery. - The truth: If there was a weight loss drug, product or diet that was a miraculous breakthrough, do you think it would have it’s own infomercial or it would be in a magazine? You are smarter than this! Don’t start a fad diet. Start by evaluating your family history, current eating habits, current exercise habits and your current health diagnoses and make a plan that works for you. If you don’t know where to start, make an appointment to see a Registered Dietitian. A dietitian records your height, weight, age, sex and level of physical activity and calculates a tailored meal plan that works for you. There is not a ‘one diet ﬁts all’ plan. Many other professionals may give you their own tid-bits of nutrition advice, but the only person who will give you credible nutrition information is a dietitian. Being healthy and ﬁt isn’t a fad or a trend. Instead, it’s a lifestyle. Live it!! Y Christina Bartlett RD, LD is a Registered Dietitian and the owner of Everything In Moderation. Dedicated to providing nutrition information that is tailored to the individual. Visit: www.eimnutrition.com
I learned late in life “that heart disease is my greatest health threat, which is why I want every woman to know the truth – that heart disease is their number one killer.” Star Jones wants you to know that more women die of heart disease than all forms of cancer combined. This killer isn’t as easy to see and is often silent, hidden and misunderstood. Join Star to stop the No. 1 killer of women. We can be the difference between life and death.
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by Barrie Silberberg
he most common statement that I often hear from parents, who are told that they should change their child’s diet, is that they are afraid their child will starve, because they never try new foods. Many children with special needs are afraid to try new foods and experience new textures. They become so accustomed to what they usually eat that tasting anything new is frightening. What I suggest to parents is to not force a new food onto their child. Try going 50/50. For example, if you are trying to wean a child from cow’s milk, try adding some new/alternative “milk,” such as rice, almond, hemp or coconut to the milk that they are used to drinking now. You might want to start with an 80/20 beverage mixture ﬁrst and later adding more of the new substance, if they are not noticing the difference right away (do not let them see you pouring!). If you want to introduce a new bread, (gluten free, for example), use one slice of familiar bread and one slice of the new bread in a sandwich. Pick a favorite meat or nut butter, so that the child will not focus on the new bread. Find one that emulates the bread he or she is used to eating.
46 PARENTING SPECIAL NEEDS.ORG
One suggestion when trying a new fruit or vegetable is to allow the child to lick the food ﬁrst, to get a feeling of the texture and taste. Another option is to include a dip. Kids seem to love to dip foods into something for fun and additional ﬂavor. Items to try are: yogurt, dressings, sauces, melted cheese (or Daiya for a dairy free option), agave nectar, nut butters, cream cheese, sour cream, pudding, butter, olive oil, ketchup, mustard or another favorite condiment. Try adding ﬂavor to foods with a variety of spices. Again, let the child lick just a bit to experience the new ﬂavor. Some favorite spices are: ginger, garlic, or cinnamon. Use a light amount at ﬁrst and then, if the child likes the ﬂavor, you can gradually add more to your dishes. Make an effort to be creative with your child’s food. Create cute designs, such as a caterpillar that looks like a character in Eric Carle’s book. Use a slice of a tomato or a piece of cheese, cut-up apples, and fruit leather cut into shapes. Bring a smile to a child’s face by spreading nut
special diets health & ﬁtness butter onto apples and inserting mini marshmallows inside for teeth. Display fruit in cute ways, to represent birds, animals, butterﬂies or other ﬁgures. Use cookie cutters to cut out shapes into cheese, fruits and vegetables or protein sources to arrange to look pretty on a plate. Eggs make for an assortment of imaginative ideas. Try making deviled eggs with cute faces. Scrambled eggs make fun, ﬂuffy hair for your pancakes. Sunny side up eggs, using the yolks for eyes can make some really charming faces. Cut a shape into a piece of bread, place it in a skillet, add an egg in the open hole and cook until done. Maybe you will even want to design food to look fun with your child using a favorite book or photo. Don’t be afraid to even use a half drawn photo and then add food to complete the picture. The Internet will provide you with many ideas of food fun. Try Pinterest or just “google” a shape that you would like to make and click on “images” to view a variety of creative ideas.
You might be surprised at what your child will eat, if you give them the time to enjoy some foods that you might not think they would enjoy, by being creative and imaginative and introducing new foods that might be great additions to your family.Y Barrie Silberberg is the author of The Autism & ADHD Diet : A Step-byStep Guide To Hope and Healing by Living Gluten Free and Casein Free (GFCF) And Others Interventions. Her web site is: www.puttingyourkidsfirst.com
© The Monday Campaigns, Inc
All Images courtesy Pinterest
Now we get Mondays off!
One day a week, cut out meat.
by Cristen Reat
here is no question that getting ready for an IEP meeting can be a stressful and intimidating experience. The amount of information that parents must absorb and be expected to understand about their child and their educational needs is staggering. Instead of being paralyzed by information overload, empower yourself by getting organized, learning about students’ rights under the law and utilizing data to your child’s advantage. Here are some easy to use tools that you can access using your mobile device to help prepare for IEP meetings. Many of them are free and available for both Apple and Android devices. Transform your fear into conﬁdence and make your next IEP meeting the best one yet!
by Excent Corporation MyIEPmeeting is an organizational tool that helps parents and guardians effectively participate in their student’s Individualized Education Plan (IEP) process. Features include checklists for organizing information, a behavior tracker, task lists, contact manager to store team members’ contact information and the ability to store ﬁles such as PDFs, photos & videos. Price: $1.99 IOS: https://itunes.apple.com/us/app/myiepmeeting/
b Smarty Ears by ATEval2Go is a revolutionary app useful for A aany professional responsible for putting ttechnology into the hands of students. Authored by a seasoned Speech-Language A Pathologist/Assistive Technology Specialist, this app is designed to help you document all observations and considerations essential to an assistive technology evaluation. Though designed for professionals, this is a fantastic tool for parents to understand the Assistive Technology evaluation process that can help them advocate for their child. Price: $39.99 IOS: https://itunes.apple.com/us/app/ateval2go/
Full review: http://bridgingapps.org/app/?id=479474205
Swirlicity Lite S
b Sad Cat Software by TThis may be one of the most useful apps for p parents to download! Swirlicity is a simple app w where you can draw with swirling particles sset to calming music. Besides drawing and swirling, you can also attract, repel, and move the particles. This app was used in an Early Childhood Special Education classroom with students who were over stimulated and needed assistance with being calmed. Given the approaching IEP season, we parents can use all of the relaxation tools we can get! Price: FREE IOS: https://itunes.apple.com/us/app/swirlicity-lite/
Full review: http://bridgingapps.org/app/?id=380838237
Plan with Me P b Northcott by Plan with Me is a helpful tool that can be used P tto build a Positive Behavior Support Plan. TThis app is designed to focus and create a behavior plan based on the individual and his/ b her needs and strategies to help manage and understand the behavior. Plan with Me can be used by teachers, parents and therapists. It is also designed with the intent of including the individual in the planning process. Price: $2.99 IOS: https://itunes.apple.com/au/app/plan-with-me/ id588585993?mt=8
Full review: http://bridgingapps.org/app/?id=588585993
PARENTING SPECIAL SPECIAL NEEDS.ORG NEEDS.ORG PARENTING
NOV?DEC2014 2012 MAR/APR
b Covington Enterprises Unlimited by iiOT Screener is a free app developed by Dr. FFrederick B. Covington to assist parents and p professionals in screening children who might h have a developmental delay. The app does this by allowing a user to input general information about the child and themselves and answer a series of Yes/No questions. When the results are generated, you have the ability to email them. There is also a search tool that will help you ﬁnd professionals like Speech Pathologist, Occupational Therapist, Physical Therapists, Pediatrician, and Psychiatrists in your area. Price: FREE IOS: https://itunes.apple.com/us/app/iot-screener/
b Syracuse University by iAdvocate is a helpful tool for parents to use iA aas a resource to help them advocate for their cchildren with special needs in the educational eenvironment. The app is divided into sections including Strategies, Resources, and Responses. Strategies include basic information about an Individual Education Plan (IEP), writing goals, the importance of documentation, knowing the law and getting support. The Resources section contains a list of articles, books, ﬁlms, websites and a summary of inclusion-related court cases. Price: FREE IOS: https://itunes.apple.com/us/app/iadvocate/
Android: https://play.google.com/store/apps/ details?id=com.iot.iotscreener&hl=en
Android: https://play.google.com/store/apps/ details?id=edu.syr.iadvocate&hl=en
Full review: http://bridgingapps.org/app/?id=427814325
V Voice Recorder HD for Audio R Recording, Playback, Trimming a and Sharing b eFUSION Co., Ltd. by TThis app is an excellent voice recorder with m many outstanding features that can be used for a variety of purposes. The recorder itself is quite easy to use with very high quality sound. Features that we love and advantages that this app has over other similar voice recording apps is the ability to record for long periods of time and to be able to share/ save the recordings outside of the app itself. Other uses we have found for this app have been recording information from medical appointments to remember later and recording IEP meetings for documentation purposes. Price: $1.99 IOS: https://itunes.apple.com/us/app/voice-recorder-hdfor-audio/id373045717?mt=8
© ﬂickingerbrad via Flickr
Common Core Standards C b MasteryConnect by With the adoption of Common Core Standards W b by many states, this app helps parents have aaccess to the standards in an easy to read fformat. It can be invaluable in preparing for an IEP meeting or even during an IEP meeting to understand grade level expectations. There is a section within the app that explains how the CCSS applies to students with disabilities. Topics covered include instructional supports for learning, accommodations, and Assistive Technology to ensure success. Price: FREE IOS: https://itunes.apple.com/us/app/common-corestandards/id439424555?mt=8 Android: https://play.google.com/store/apps/ details?id=com.masteryconnect.CommonCore&hl=en
Full review: http://bridgingapps.org/app/?id=439424555
If you are interested in searching for more apps, creating your own list of apps and sharing them, please go to BridgingApps.org. BridgingApps, a program of Easter Seals Greater Houston, is a community of parents, therapists, doctors, and teachers who share information about using mobile devices (iPad, iPhone, and Android) with people who have special needs.Y Cristen Reat is co-founder of BridgingApps and a mother who found success when using a mobile device with her children who have special needs.
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by Barbara Sher
ne of the fascinating facts about brain development is that as far as the brain is concerned, we are all born premature. Even though we are born with 100 billion nerve cells, they are not yet connected in networks. At birth, our organs and muscles are completely developed, although smaller than they will be, but our brain is only about one-ﬁfth its ﬁnal size. In the beginning, we start making connection using our sensory system. For example, the infant begins to put together the combination of a particular face, the taste of milk, the feel of her body and her voice and scent to mean mama or main caregiver. Another combination of sensations means dad, or that rambunctous older brother, or the dog. So, little by little, experienceby-experience, pathway patterns are formed that describe the world. The new news, relatively hot off the neuroscience press, is that all experiences are not created equal. They do not all lay down new pathways. Some experiences don’t change the brain at all while others make big changes.The deciding factor of whether the experience is going to lead to a bigger brain is (drum roll, please)……. Joy! Kids’ brains grow when engaged in playful, engaging activities. If children are enJOYing the experience in an activity that engages them and excites their imagination, it supports healthy brain development and maximizes learning. It makes sense: paying attention is a necessary
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ingredient for learning and children naturally attend to an activity when it is interesting, fun and meaningful. The sad news is that synapses that are not activated progressively wither over time. Those 100 billion cells get pruned away through the “use it or lose it” principle . You can see why early experience plays such a crucial role in “wiring” a young child’s brain and why programs such as Head Start and Early Intervention Therapy were started. Babies with strong, positive, emotional bonds to their caregivers and enjoyable playful experiences in their lives show consistently lower levels of cortisol in their brains. Play is essential to a child’s development and children like to play. It is what they do and how tthey learn We parents are in the prime position to continue to enlarge our children’s brains through play. But, wth work and other obligations, w and especially if we weren’t played with as children by our parents, it w may feel that we don’t have the time or knowledge to add “playtime” to our over-burdened schedules. These game ideas in this article hope to show you that we don’t need a lot of time or special equipment and that we all have a sense of play within us. The suggestions below will feel do-able and can be done with a “moment here, a moment there” and with no more materials than a good mood. Try out some of these ideas for a spontaneous game with your infant or let them inspire you to do others. Your babies will think they are just having fun, but you’ll know they are making new synaptic connections!
power of play fun & functional TONGUE TALK
ICE CUBE FUN
Even as young as 3 months, Placing an ice cube on baby’s high infants can play the tongue game. chair tray can be fascinating fun as she When you have their attention, chases it around and tries to pick it up. It can be a great activity to keep stick your tongue out. It may be baby occupied while you get the dishes rude in some circumstances, but, washed. to an infant, it is fascinating. It’s But, of course, as with all infant activities, kinda like having a interesting stay observant. You want that ice cube to snake in your mouth that pops be replaced with a bigger one before it out. You’ll ﬁnd that often baby gets small enough to swallow. will imitate you which means, not only did they ﬁgure out which body part you used, but also how At ﬁrst, babies think things to move it. Once they can do that, add variations such as moving your tongue side to side appear and disappear so here is a simple game to show or up and down. This tongue control will serve your child them that things still exist even though it might look like it is out of sight. And it’s always nice to ﬁnd a use for a well when they start to form words. toilet tube roll. Place a small object into the tube and make a big deal Babies ﬁrst need to learn Who is in their world (mom, sis, about wondering where it went. She may look inside the dog,etc) and next, they need to learn What. Take your infant tube and later ﬁgure out to pick it up and ﬁnd the object for a tour of the house and introduce the various things. underneath. Add to the challenge by using a paper towel “This is a table”“This is the door—it opens and closes” and so tube! on. Don’t worry that your baby is too small to understand, they are absorbing the information and enjoying being the In essence, we parents are in the position to participate focus of attention with the one they love. in our children’s mental growth and by playing games, we Don’t forget to do an outdoor tour. Besides inserting also let them know that we love them so much that we knowledge, showing an infant a ﬂower or a leaf is a great take the time to play p y with them.Y way to distract them from a fussy moment.
TOILET TUBE MAGIC
DIAPER ARIA When you are changing a diaper (and when aren’t you changing a diaper!), sing a song! Sing a song about what you are doing and use whatever tune strikes your fancy. For example, if you use the tune for “Frera Jacque”, you might sing: I’m a wiping your precious little bottom I am wiping it all clean Then I take a new diaper Put it on you nice and tight Nice and tight, nice and tight Oh Oh Oh Oh If nothing else, singing will get you in a good mood! Images courtesy Facebook Friends: Above photo Ashton Berkhimer, courtesy Brandi Albritton-Berkhiner founder of My Little Sunshine Face- Down Syndrome Aware, Share, & Care?
Barbara Sher S rM M.A.,O.T.R, an occupational therapist therap pis ist and d auth author ho of nine books ooks on childrens games. games This game is adapted from Barbara’s new book THE WHOLE SPECTRUM OF MOTOR, SOCIAL AND SENSORY GAMES: Using Children’s Natural Love Of Play To Enhance Key Skills And Promote Inclusion. Check out Barbara’s other game books at any on-line bookstore or get a free game designed for your child at her web site: www.gameslady.com
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Hatching “wide-eyed” Chicks Encouraging Speech & Creating Yum!
by PSN Team & Becca Eisenberg
Ingredients • Hard boiled eggs, cooled and peeled • Mayonnaise • Mustard (1 tbsp) • Black Olives, cut into slices (or buy sliced olives) • Baby carrots • Salt
hese take a little prep work, but the actual steps to make them are simple. You can use any deviled egg recipe you like. We like ours simple— just mayonnaise, a good squirt of mustard and a dash of salt. We don’t like relish in ours so we omitted that ingredient. Any way you choose to make deviled eggs works for this.
• Sharp paring knife
TIP: For easy peel
boiled eggs add vinegar to water, boil for 13 minutes. Drain/cool in ice bath.
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Parent: Hard boil eggs and peel in advance.
We found a recipe called Easy-Peel Boiled eggs, however, we added a dash of salt and about a tablespoon of vinegar to the water prior to boiling (a tip from Grandma).
Parent: Slice baby carrots in half and then slice into quarters. Parent/Kiddo:Carefully cut carrots into small pieces for the beak Parnet: Slice black olives (or use the pre-sliced in a can) to use as “eyes”.
Parent/Kiddo: Slice through the egg about 1/3 of the way up from the bottom (roundest part). Try to reach the beginning of the yolk. This will provide easy access to removing the yolk as well a cap for the top of chick. Parent/Kiddo- Carefully cut a thin slice off the bottom part of each egg white so that it will stand upright on a plate, taking care not to slice into the yolk. Discard or eat the slice of egg white. Parent/Kiddo- Remove the yolk into a small bowl. Separate the deeper egg white “bowls” and the “caps” into different piles. Kiddo: Mash the egg yolk Parent: To the yolks, add about two tablespoons of mayonnaise, one table spoon mustard and salt to taste. We don’t have exact measurements. We started out with a small quantity of mayo until we reach the desired consistency. Parent/Kiddo: Mixed up the yolk with the ingredients, use a small melon ball scoop or spoon to fill an egg white (bottom portion of the hollowed-out egg). Add enough yolk filling so that it sticks out from the top of the egg. Kiddo: Add carrot piece for beak and olive slices for eyes. Then, place an egg white “cap” on top of the yolk filling and place the finished deviled egg on a platter. Repeat until you’ve used up all your eggs. As you fill up the platter you will have what looks like a bunch of eggs that just hatched.
Eat! Talk! Enjoy!
Language Time: Cooking together is a great way to bond and work on building language skills. Cooking with your child can help build vocabulary, improve following directions, sequence, and build narrative skills. It’s also fun and multi-sensory! Before beginning the recipe, review the ingredient list with your child. This will help prepare your child as well as build their vocabulary (e.g. egg, olives, carrots, mayonnaise). Review and explore the ingredients one by one. For example, when exploring an egg, discuss how it looks and feels. Talk about how it’s fragile and why. You can ask your child, “Why is an egg so fragile”? Your child can come up with different answers that can help problem solving and answering “wh” questions. Ask your child, “What is inside the egg and where does an egg come from”? As you gather your ingredients, review the recipe. Using visuals within the recipe can be beneficial whether your child is a reader or emerging reader (e.g. use photographs, pictures). Using visual supports can help a child follow along with the recipe easier. Take turns and encourage conversation while you are cooking. Discuss the cooking process that will occur. Explain to your child what “boil” means. Watch the water bubble and discuss the temperature of the water and why it bubbles. For variety, use brown and white eggs and talk about the difference in color. You can also use different size eggs and discuss which is smaller, bigger, etc. After you are done boiling the egg, work on actions such as “peel”, “mash” “cut”, “mix”, etc… As you complete the steps, ask your child to recall the last step or last few steps. This will help your child recall information and improve their narrative skills. If he or she has difficulty, use choices or prompts to help facilitate the correct answer. Other language concepts targeted can include body parts (e.g. eyes and nose of finished eggs), shapes, colors and prepositions.
Carryover Picture Books: Read“Hank Finds an Egg” by Rebecca Dudley “Green Eggs and Ham” by Dr. Seuss w Becca Eisenberg is a mother of two young children and a speech language pathologist, author and instructor. Her website, www.gravitybread.com encourages learning time during mealtime. On her website, she writes children’s book recommendations, app recommendations, as well as child friendly recipes with language tips their family.
fun & functional learning to sign
ASK Angie ASL -Communication Plan by Angie Craft HandCraftEdASL
0HOTO BY -IKE -ORRIS VIA 7IKIMEDIA #OMMONS
the ďŹ rst deaf player on offense in NFL history.
â€œThe biggest thing is this: to have no excuses in anything you do and Iâ€™m not talking about just the hearing impaired, but everybody. If thereâ€™s something you truly want to do, youâ€™ll ďŹ nd a way to do it. Itâ€™s not going to be easy; itâ€™s going to take a long time and itâ€™s going to be hard. Believe in your dream, and if you donâ€™t get to your dream, make sure youâ€™ve done everything you can to get there. Nobodyâ€™s perfect and everybody has something to overcome. Everybody still has the opportunity to do what they want to do. â€œ ~Derrick Coleman, Seahawks Fullback Source: Sporting News Angie Craft author and teacherbrings over 26 years of experience in deaf education and is committed to serving the deaf community. Keenly aware of the isolation that deaf students often experience, Angie developed and wrote HandCraftEdASL to bridge the communication gap between deaf children who primarily use American Sign Language and their parents, peers or educators. www.handcraftedasl.com
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VIDEO DEMONSTRATION: â€œIDEA 2004 Section 300.324 s 4HE )%0 TEAM MUST CONSIDER THE COMMUNICATION NEEDS OF THE CHILD s )N THE CASE OF A CHILD WHO IS DEAF OR HARD OF HEARING THE )%0 TEAM MUST CONSIDER /PPORTUNITIES FOR DIRECT COMMUNICATION WITH PEERS AND PROFESSIONAL PERSONNEL IN THE CHILDS LANGUAGE AND COMMUNICATION MODE !CADEMIC LEVEL AND FULL RANGE OF NEEDS INCLUDING OPPORTUNITIES FOR DIRECT INSTRUCTION IN THE CHILDS LANGUAGE AND COMMUNICATION MODE !LTHOUGH IT IS NOT REQUIRED THOSE WITH A HEARING LOSS AND A PLAN COULD ALSO BENElT FROM THIS PLAN Available online: www.ďŹ‚doe.org/ese/pdf/ModelCommunicationPlan313189.pdfâ€?
As always, if you have any questions you can email me @: email@example.com Y
proud moments® enjoy your life
Sharing“I CAN!”attitudes Living Life to the Fullest My son, Jordan, faces many challenges in life. He is blind, cognitive impaired, mild CP, and has epilepsy. In 2011, his teacher entered him in the “Yes I Can” Awards program, which recognizes students with special needs who achieve great things despite their daily challenges. This program is available on a state wide and national level, so she entered him in both programs in the area of Arts for his musical talent. Jordan is self taught on the piano and sings quite well. Also, he is a natural performer. He won for the state of Michigan and was asked to perform 45 minutes during the ceremony in Grand Rapids, MI., where he also received his award. One month later, we learned that he also won nationally and we were flown to Washington, DC, where he again performed and was presented another award! Oh my, I was so proud and continue to be as he now performs twice weekly at nursing homes and plays with a band around the Detroit area! Nothing slows this boy down! That’s really what I’ve always wanted for him; to live the fullest life possible. And he’s doing it! w ~ Stacey Obrecht (Proud Mom)
The Yes I Can! Awards recognizes the accomplishments of children and youth with exceptionalities (ages 2-21). Council for Exceptional Children (CEC) selects winners for their outstanding achievements in one of seven categories: Academics, Arts, Athletics, School and Community Activities, Self-Advocacy, Technology, and Transition. www.cec.sped.org
Next Issue! Share a Proud Moment with us Proud Moments can be any time that you have been extremely proud of your child with special needs. It can be when they are giving it their all or reaching a milestone. Please make sure to include photos. firstname.lastname@example.org
Jordon achieving with an “I CAN” attitude Photo courteousy Stacey Obrecht
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Michael Phelps - Olympic Athlete
cc Photo by Just Jared/Flickr.com
Known as the most decorated Olympic Athlete in history (22 medals), as well as the greatest swimmer of all time. Michael was diagnosed with ADHD at age 9, yet has been able to maintain razor-sharp focus in his training and competitions.
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