I’ve written previously about Deanne’s (@OMum22 on twitter) campaign to raise $2,000 so that her twin sons, Owen and Oliver, can be equipped with iPads to help them navigate the world. Both boys live on the autism spectrum.
Deanne, who is neck deep in other people’s taxes until the beginning of May, has done a guest post before on my blog. Last time was about special needs parents and tax benefits. This time she is guest-posting to talk about autism awareness, her boys and her progress in fundraising for the iPads.
We are more than half-way through Autism Awareness Month. If you live in Toronto you may have noticed that the CN Tower was lit-up blue on World Autism Awareness Day, April 2nd – because blue is the colour used by the Autism awareness campaign.
Both of my adorable children (Owen and Oliver) are on the autism spectrum. As it’s Autism Awareness Month, I wanted to share some information about autism spectrum disorders (ASD) in general, specifically how ASD impacts my children, what I’m currently doing with and for the boys, and some things that you might consider doing too (if you are so inclined!). I’ve emailed this to message to family, friends, co-workers, neighbours – and now Jim has kindly agreed to let me post this on his blog. Some of you reading this may know that I am currently fundraising in order to purchase iPads for both boys: Owen and Oliver’s iPad Fundraising Page! If you don’t, I’ve included more information on that below. Hopefully you’ll read all of this, but because I know everyone is pressed for time I’ve put headings above each section so you can skip some if you choose. If you do nothing else, please read the “How you can help” section at the end, where I have outlined some suggestions for how you can help Owen and Oliver specifically, as well as all families affected by autism.
So what the heck is ASD anyway?
The brains of people with ASD are wired differently from those of us who are neurotypical. You may have recently read about a study conducted in Montreal that demonstrated this: BBC NEWS Report on U of Montreal Study In comparison with neurotypical people, those with ASD have challenges in three main areas – communication, social skills and behaviour. The main difference between individuals with Asperger’s (Aspies) and others on the autism spectrum is communication. Aspies generally have no trouble with speech and in fact can often be ahead of their peers in terms of their vocabulary. My son Owen, like many people with ASD, is non-verbal – he can babble and make sounds but cannot speak any words. Oliver can speak but has “echolalia” – most of his speech is copied and scripted rather than spontaneous. Both of my boys have challenges with receptive language (understanding what people are saying to them).
As far as social skills are concerned, ASD people can have difficulty interpreting non-verbal cues, reading facial expressions, understanding how others feel as well as concepts like sharing and turn taking. In terms of behaviour, there is often an almost obsessive-compulsive focus on certain items, lots of repetition, the need for routines and difficulty in handling surprises, changes or even transitioning from one thing to another. Many individuals on the spectrum also have problems with sensory processing.
The one thing that is common to all ASD individuals however, is how unique their challenges are. No two individuals are alike in this regard.
What am I doing for Owen and Oliver?
In February 2011, around their 5th birthday, Oliver and Owen both started IBI – Intensive Behavioural Intervention – it’s based on the principles of Applied Behavioural Analysis but geared specifically to assisting ASD children learn to communicate, acquire social skills and cope with the anxiety that ASD often induces. Essentially what this consists of is taking an inventory of their skills and coming up with ways to address skill deficits using repetition and reinforcement. IBI is funded by the province of Ontario and they attend a full-time program at Surrey Place in lieu of school. The current plan is to integrate them into the main school stream in two years time, but this goal will be re-assessed every 6 months. The waitlist for IBI is, quite frankly, obscene. There are estimated to be 1500 children in Ontario on the waitlist for IBI. We were on the waitlist for 18 months; the average wait time is longer. While waiting for IBI to start I worked with the folks at the Geneva Centre for Autism on the ‘therapies’ – speech, occupational and behavioural. I also attended lots and lots of workshops. The workshops continue and I’m also spending a lot of time with the therapists at Surrey Place to ensure that we’re all consistent in how we deal with the boys – every day we complete communication books to share between us issues of concern and progress, and I speak or meet with one of the therapists at least once a week.
The importance of visuals
One of the things that has made a huge difference to both boys is the use of visuals. The Montreal study confirmed that the most highly developed areas of the brain in autistic individuals are the parts responsible for visual processing. Temple Grandin has famously talked about how she thinks in pictures. One of the behavioural therapists the boys and I worked with told me about a study that demonstrated when you speak to ASD individuals the part of their brain that processes the information is the visual centre. They literally hear in pictures.
So what does this mean in practice? It’s no surprise that both of the boys respond extremely well to visuals as a form of receptive communication. I use pictures to explain what they’re going to be doing next and what they’re doing during the day ahead. They understand what I’m asking of them and what to expect. It has drastically reduced their anxiety levels in general and specifically with respect to transitions from one activity to the next.
Owen is also using visuals for expressive speech – he requests food, books, dvds, toys and songs by showing me pictures of what he wants. Even though Oliver is verbal, he has difficulty with spontaneous speech. I read one ASD person’s description of trying to find the right words as being like trying to match socks in the tumble dryer, while it’s tumbling. Oliver has found pictures to be incredibly supportive in helping him remember words, and without the anxiety associated with trying to remember, he is better able to focus on learning other skills that he has challenges with like eye contact.
The visuals I currently use are laminated pictures with velcro on that I stick on various boards. They were made by the therapists at the Geneva Centre and are part of a Picture Exchange Communication system, or PECS. If we had iPads we’d have instant access to any picture we wanted. It would be so much easier to build the boys’ visual calendars incorporating pictures for things we don’t currently have (e.g. visit to the dentist!). Owen could take his pictures anywhere and I wouldn’t have to worry about losing them. I wouldn’t have to fumble through pages of pictures to try and find the right ones and best of all, in those high-stress situations when unanticipated events occur (“we can’t use the elevator, it’s out of service!”), I’d have a way of explaining this to the boys in a way they’d understand. They wouldn’t necessarily be happy about it, but at least they’d understand what’s going on.
Augmentive Alternative Communication (AAC) devices have existed for years but they are expensive. Dynavox devices typically cost $7,000 to $8,000. An iPad can be used by Owen and Oliver as an AAC at a fraction of the cost. iPads also have other benefits though – while using them they are developing their fine motor skills, something that’s very important in Owen’s case in particular. Oliver loves art but he has some sensory challenges with things feeling ‘icky’ – an iPad would allow him to draw and paint without the anxiety that he often feels when using chalk, paint, etc. There are hundreds of apps being developed for special needs kids that assist them with reading, writing, math and so on. Plus, it’s a portable way of helping the boys have fun and relieve anxiety. Currently when I take the boys out, I pack toys, books, visuals – I feel like a mule at times. All parents know that kids can have difficulty with transitions and waiting, but for ASD kids if they get upset they can self harm (Owen will bang his head on the floor for example), harm others (Oliver will often kick and hit as a way of coping with anxiety) and get themselves into danger – recently both boys had a tantrum in the middle of the road because they didn’t understand why they had to get off the streetcar we were on (it was short-turning). Having something portable that I can use not only to explain to them what we’re doing in a way they understand but that also eases the stress of transitions, routine changes and waiting would be a god-send.
Here are some recent articles about how iPads have become a great tool for helping ASD people with the challenges they face:
The Elephant in the Room – Is Deanne asking me for money?
Yup! But I’m not asking for much! And if you can’t afford to give, there’s other ways you can help – see “How you can help” below.
I have a good job with a great employer. I can provide a home for my kids as well as feed and clothe them. Believe me, I know I’m lucky. But I’m also a single parent of twin boys who both have special needs. I don’t receive any financial support from the boys’ father. In order to work I have had to hire a full-time nanny, but I work part-time so I can go to all the therapy appointments for the boys. Oliver and Owen were premature and were affected by retinopathy of prematurity so both boys have to wear glasses. Taking into account the breakages and losses that occur when little boys wear glasses I have spent $1,000 on eyewear for them in the past 12 months alone (after reimbursement from insurance)! I honestly can’t afford to buy iPads for the boys without help.
How you can help (Oliver and Owen and the ASD community in general)
- Donate! http://owenoliver.chipin.com/owen-and-oliver-taylor You don’t have to give a big amount to make a big difference! I’m a firm believer in the power of micro-donations. Right now I’ve raised $1,035 towards iPads for the boys due to the amazing generosity of friends, family, co-workers, neighbours and people I haven’t even met. If I could persuade 193 people to give $5 each then I will have enough to buy both boys 64GB iPads, together with protective cases.
- If you can’t donate, then consider helping me find those 193 people who can. You could add a link to Oliver and Owen’s donation page on Facebook or post the Chipin widget on your website if you have one. If you are on twitter, follow me (OMum22) and re-tweet my fundraising requests to your followers.
- Selling something? If you’re spring cleaning and you decide to sell something on Craigslist or have a yard sale, maybe you could consider donating a small amount of what you receive?
- If you prefer your financial support to go to a registered ASD charity then I highly recommend the Geneva Centre for Autism – they do great work. You can find out how to donate on their website – www.autism.net
- Learn more about ASD.
- All Canadians – ask the candidates in your riding why we don’t have a national Autism strategy and tell them it’s important to implement one.
- For those of you who live in Ontario, we have a provincial election in the Fall. Ask your candidates and their representatives what they plan to do to reduce the IBI waitlist for ASD kids and improve service delivery for all of those with ASD.
- If you are upgrading to an iPad2, consider donating your first generation iPad to a family with special needs members.
- Talk to me and other families who have kids with special needs. It’s easy for us to feel isolated and our kids don’t have a contagious disease – ask us how we’re doing!
- If you see a child kicking and screaming or throwing themselves on the floor, don’t assume it’s because they have bad parents. If you see kids with ‘leashes’ on their backpacks, realize it’s likely because the parents want their kids to be safe.
Thanks so much for reading this.
Deanne, Owen and Oliver.