Autism Parent’s Association
APA Newsletter March 2017 Inside this issue:
Issue 21
Message from Omar! Dear Parents,
Message from Omar
1 Here we go again...
Upcoming Events
2
Past Events
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We are delighted to bring you another issue full of information, activities and much more... Your committee works tirelessly to "support" all those in need our help, so, if you are faced with a situation, don't stay back, contact us.
Celebrating the Sacraments
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APA is there to support you and facilitate the process.
and Interventions
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We would like to take this opportunity to encourage you to attend our April activities as outlined in this newsletter and if you can't make it, share it with others whom have a family member/s or friends under the spectrum.
Book Review
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Stay tuned for the upcoming activities, especially the ones dedicated for the autism awareness month.
Autism: Cures, Therapies
Solutions
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Enjoy this newsletter and as always "Help Us Help You" All the very best.
Spring Break Activities
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Omar Farrugia President – APA
APA information
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APA Newsletter
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Issue 21
Annual APA General Meeting & Family Fun Day on the 29th April 2017 @ 2:00 PM onwards
Villa Francia, Triq Preziosi, Hal Lija
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APA Newsletter
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Issue 21
What have we been up to? •
APA Youth Programme: 25 youths attend the Saturday programme
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A Truly Accessible University Conference: Focus was on identifying the barriers that students with Autism face in Tertiary Education
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President’s Foundation for the Wellbeing of Society (PFWS) discussion on learning disabilities: Discussions centered around postsecondary education
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Meeting with Education Authorities: Training plan for LSAs and teachers in primary and secondary schools
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Training of Police officers: Introductory meeting with the Director of
the Police Academy regarding the possibility of including training on Autism in the training programme of Police officers
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APA Christmas Party: This year the children were entertained by a magician and animators at the party. It was a fun experience for children and adults alike!
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Junior College Human Library event: APA representatives attended this activity therefore giving the opportunity to students and staff alike to ask any questions related to Autism Page 5
APA
Celebrating the Sacraments
For a lot of parents, faith is important, and many are preparing their children to receive their sacraments in the coming months. However, such a joyful celebration may be accompanied by anxiety, as we all know the struggle that we have to face as parents with public judgment – sometimes even in a church setting,
And this is what may cause parents to sit in the back of the church, skip out on receiving the sacraments themselves because they are caring for their child, or not even bring them to church at all. However, there is a lot that we can do as parents to help our children to get used to sitting during mass and therefore be in a better position to celebrate their First holy communion or Confirmation.
To help keep kids attentive at Mass: 1. The key is to make Mass attendance a positive experience. 2. What frequently works is initially attending Mass for only a short while, gradually extending the time and getting a treat afterward. 3. Depending on the child, one may want to start with the first few minutes of Mass and work forward, or the last few minutes and work backward.
4. Consider bringing toys (but not ones that make noise), giving stickers at intervals for sitting quietly, and choosing a seat that will allow for taking breaks or making a quick exit. 5. Consider using headphones for the quietest times of the Mass and allowing the child to listen to soft, calming music. 6. Consider bringing a special "church" bag that includes special items that are only available to your child when attending Mass. 7. Try different areas of the church for sitting.
8. Very gradually, you may drop some of the "supports" that enable your child to participate in the Mass. Familiarity breeds success. Children will learn what to expect, how long Mass lasts and even that going to Communion means it's almost over.
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Issue 21
In addition, Nancy Thompson from the NCPD suggested parents put together a Mass book for their children (downloadable for free from ncpd.org) that would enable children to use photographs to see what's coming next during the Mass. The ritual-heavy Catholic Mass is perfect for such a project, and the more individualized (such as using photos of the child's church and priest) is recommended. That way, the child can familiarize him or herself with the routine of the liturgy and be confident that he or she knows what to expect. "That can be a very helpful technique to employ so that they are able to prepare for what's coming next, and then be able to par-
ticipate in the way that they've come to understand they need to participate at that time," Thompson said. "Part of that participation is putting the picture in the book." Thompson also recommended "backward chaining," or teaching a child with autism to be comfortable in a situation by working backward and always "ending with success." For example, she said, start from the final blessing. Then perhaps go for the last ten minutes of mass and the final blessing, then for the Communion procession, ten minutes of mass and final blessing. But "you don't want to push too far too fast," she said. "It takes a lot of repetition and practice." Most importantly, she said she wants special needs children to be "visible, not invisible" to the members of the community. "If they don't see them, they don't know them and they can't know their value," she said.
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The following links may help you to prepare a social story for mass and for the celebration of your child’s First Holy Communion.
http://www.rcan.org/sites/default/files/files/WeGoToMass.pdf http://www.rcan.org/sites/default/files/files/GoingToMass-AStory.pdf
Adapted from: © Arlington Catholic Herald 2011
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APA Newsletter
Autism: Cures, Therapies and Interventions By Dr Alistair DeGaetano
Dr Alistair De Gaetano’s main areas of interest are disability law and human rights, with a particular focus on the nexus between autism and the law, fuelled by the personal experience of growing up with Asperger Syndrome, and wanting to devote his energies to the field of autism. He is a qualified lawyer involved in the field of disability and autism self-advocacy, and promotes the concept of neurodiversity through his work.
One principal concern for many parents is the issue of therapies and interventions, particularly due to arguments one would hear regularly as to the 'need for early intervention'. While therapies and interventions, correctly chosen and applied, can make a world of a difference both to autistic kids and to their families, I feel it is important for parents, or for anyone considering or involved in therapy, to first consider a number of points as to the hows and whys of such interventions.
Pre-Intervention With interventions, whatever the intervention, the first obligation is an evaluation using a person-centred approach. This is now a legal obligation under the Autism Spectrum (Empowerment) Act, and the specifics of this concept are to be further defined in the Autism State Support Plan being developed in terms of the Act. At this point, it is important to discuss with and ensure that the relevant professionals carrying out such evaluation, make every effort to look at a specific child's individual needs, and model an early intervention plan around those needs, using the resources at hand.
Following this, 3 main areas are of paramount importance as to therapies themselves:
1) Reason for Intervention Most available therapies are behavioural interventions, however, it is important that parents understand - and choose - a method of a particular therapy/ mix of therapies that is aimed at making the child better understand, and interact with the (often inaccessible) world around them, through proper education and skilling - and not just as a means in itself to stop 'annoying' behaviours. Damian Milton's article in this regard is good: 'So what exactly are autism interventions intervening with?': http://www.bild.org.uk/EasySiteWeb/GatewayLink.aspx?alId=6239
I was told, a few years back during my PhD research, by a behavioural therapy practitioner, that the main aim of such therapies should be to teach autistic children a 'second language'. We should aim to understand and respect their way of perceiving the world, and their ways of communicating should be respected and allowed, in as far as they do not result in the children hurting themselves or others. Ideally, this would also be embraced by wider sections of society, but even in the absence of this, the core nuclear family is where the child receives its first validation and acceptance.
However, the 'neurodiverse' child will need to better understand and communicate with a world, the 'neurotypical' world, that uses a different language and operates on different rules than those the child is automatically programmed with. Hence, the use of properly chosen and devised therapies, in gently and lovingly teaching the child a 'second language' in order to be able to better understand and access a largely inaccessible world, while still respecting, accepting and reinforcing a child's fundamental personhood and identity.
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Issue 21 2) Magic Therapy vs Person-Centred Approach There is no 'magic bullet' for autism. First of all, parents should stay away from 'quack cures'. In this regard, it would be good to cite the words of the US Food and Drug Administration (FDA), which in 2014 stated, in a public service announcement, that “there is no cure for autism. So, products or treatments claiming to 'cure' autism do not work as claimed. The same is true of many products claiming to 'treat' autism. Some may carry significant health risks.�
Therefore, any such propositions, be they offered in Malta or abroad, such as in the forms of nutritional/ chemical therapies or supplements, nasal sprays, bleach enemas, oxygen therapy, chelation therapy and stem cell therapy, should be viewed with caution and also run by appropriate professionals. Caution is warranted, as they can simply be a waste of money, but worse, also have an emotional impact on both parents and children, and also lead to medical complications in children, at instances life-threatening, also opening the scene to child abuse allegations.
However, as to more reputable therapies - no one particular therapy is a one-size-fits-all out-of-the-box miracle therapy. One particular therapy might work for some children, and not for others. Some elements of one/ more therapies might work, some might not. So that is why it is important to tailor an individualised plan, using the resources at hand, to draft in those elements of one or more interventions, that would best be suited to a healthy and empowering intervention. So the final plan might entail just one therapy method, or a collection of different elements from different therapies - depending on the needs of the child. Also, it is important to review the intervention plan from time to time, and update it according to the child's needs, milestones etc, always in a person-centred way.
As to parents pushing for funding one specific kind of therapy, claiming its almost-miraculous effectivity, it is important to bear in mind what background of knowledge they have, and also what they are reading - not everyone has the same level of expertise, some are first-time, desperate parents, and obviously certain therapy providers run a business, and some use more 'coercive' approaches than others, for example, through advertising or information dissemination methods.
The message being - every child is an individual, and there is no 'magic cure' - so look at the child, and tailor accordingly. A right to funding specifically for only 1 therapy as 'the' therapy was rejected by the Canadian Supreme Court in Auton v. British Columbia, and the Irish High Court in O'C v. Minister of Education. However, when it comes to non-specific funding of therapies, different jurisdictions have allowed this ex. Israel's National Insurance Law and South Carolina's Insurance Law (Ryan's Law).
3) Therapy should be a 2-Way Process Therapy is not just something to 'correct' a child, or to help a 'poor kid' to learn about the world. Parents have a large part to play, in also understanding the child's world and needs, and being participants, as far as possible, in the process. This will help them understand, for example, a child's 'challenging behaviours' at home, liaise accordingly with the therapist/s, and also be able to, for example, liaise with teachers at school. This is why therapies - or elements of therapies, if a mixed plan is deemed necessary - that also mandate the involvement of parents and immediate caregivers, are beneficial for both the children and their families. In this regard, there is also this recent good article by the BBC about this concept: ''Super-parenting' improves children's autism': http://www.bbc.com/news/health-37729095
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APA Newsletter
Book Review
The Out-of-Sync Child by Carol Stock Kranowitz (Author) Does your child exhibit... Over-responsivity--or under-responsivity--to touch or movement? A child with Sensory Processing Disorder may be a "sensory avoider," withdrawing from touch, refusing to wear certain clothing, avoiding active games--or he may be a "sensory disregarder," needing a jump start to get moving. Over-responsivity--or under-responsivity--to sounds, sights taste, or smell? She may cover her ears or eyes, be a picky eater, or seem oblivious to sensory cues. Cravings for sensation? The "sensory craver" never gets enough of certain sensations, e.g., messy play, spicy food, noisy action, and perpetual movement. Poor sensory discrimination? She may not sense the difference between objects or experiences--unaware of what she's holding unless she looks, and unable to sense when she's falling or how to catch herself. Unusually high or low activity level? The child may be constantly on the go--wearing out everyone around him--or move slowly and tire easily, showing little interest in the world. Problems with posture or motor coordination? He may slouch, move awkwardly, seem careless or accidentprone. These are often the first clues to Sensory Processing Disorder--a common but frequently misdiagnosed problem in which the central nervous system misinterprets messages from the senses. The Out-of-Sync
Child offers comprehensive, clear information for parents and professionals--and a drug-free treatment approach for children. This revised edition includes new sections on vision and hearing, picky eaters, and coexisting disorders such Autism and ADHD, among other topics.
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Thank you Agenzija
Zaghzagh for the A4U grant which will help APA to support adolescents with Autism in the Youth programme.
Adapted from Slide Share: Brooke Armijo
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Spring break is around the corner! We look forward to warmer days, flowers and more opportunities to get outside and play. Below, you’ll find a range of activities as dynamic as the weather. Use this list on warm days when you want to grab the kids and do something together outside or inside the house. We can’t help but feel hopeful in the spring. As winter thaws, it’s an exciting time for new beginnings and growth in nature. Kids feel the new energy too, and want to get into the spirit of the season. The activities below can help!
#1:Turn Flowers into Different Colours What a perfect way to bring nature and colour indoors! Try doing this project using several jars in a rainbow of colours. Use food colouring and white flowers .
#2: Use Nature to Make Art Art and spring go hand in hand. Go outside and find whatever petals or leaves are available, then replicate the designs by using simple pen and paper, or have your child come up with combinations of their
#3: Plant Something
Our favorite idea for something to do in spring is to plant seeds with your kids. Planting seeds and nurturing them as they grow is a great indoor-outdoor activity for everyone.
#4: Fly a Kite Springtime breezes make it the perfect time to go outside and fly a kite with your kids!
Adapted from http://www.mykidsadventures.com/indoor-outdoor-spring-activities/
Contacts: Parent Support Aides Autism: (General)
Ms Valerie Brincat
7928 5438
Autism: 0 –8 years
Ms Carmen Abela
9946 4269
Ms Maruska Dimech
7901 1476
Autism: (Youths)
Ms Alexandra Borg
9942 7839 (After 5pm)
Autism: (Gozo)
Ms Joanne Sciberras
9955 1337
Autism Parent’s Association P.O. Box 30 Marsa
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Memberships For those of you who haven’t sent in their renewal or if you would like to become a new member, we kindly ask you to fill the application form (www.autismparentsassociation.com) and send it to the address noted in the form together with €10 for your membership. All money collected from memberships and donations received go towards the Association’s expenses, which include the printing of leaflets and the organization of activities for parents and children. Financial statements, outlining all income and expenses for the past years will be presented at the Annual General Meeting, and published on the APA website.
Parents with lots of experience and brilliant ideas are ready to answer your questions!! Hope to see you
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