Parents of children with Autism and Special Needs often feel the weight of the world on their shoulders. Indeed it is not an easy journey, countless obstacles, illness, exhaustion, and sensory overload often keep us in. As I look at the photo above, I am reminded of a poem by Richard Lovelace –
Stone walls do not a prison make,
Nor iron bars a cage;
Minds innocent and quiet take
That for an hermitage;
If I have freedom in my love
And in my soul am free,
Angels alone that soar above,
Enjoy such liberty.
As the cold months of winter linger and cabin fever sets in, my 7-year-old non-verbal son whines more and more. Who can blame him? We’re all longing for spring and sunshine. Last winter I read my gardening book (I have no time while the weather is nice) and I made a garden plan. I was surprised how much quicker the last weeks of winter passed by as my thoughts were already on spring.
This year I am enjoying the retreat, as I try to master some gluten-free baking. After 6 years of therapies for feeding difficulties my son is now eating some solid foods – muffins, toast, deli meats and fruits. We were so close to needing a feeding tube that the GI doctor actually gave us the lecture that our son could not afford to lose even one pound. I’m happy to report that our son is now in the 90th percentile for height and weight. We no longer have to push him to eat. It’s finally ok for him to not be hungry. The GI doctor said, “Whatever you’re doing – it’s working, so keep doing it!” What a relief.
Our son is on a gluten-free diet with restricted egg and dairy. Luckily for him he does not miss the foods he can’t have because he never ate them to begin with. Our family follows the same diet (for the most part) for simplicity – I refuse to make each member of our family a special meal when we can and do find things to eat that we all enjoy. (More on gluten-free cooking and baking here: http://glutenfreeonashoestring.com/ )
So winter has become our “down time” to practice the things we want to get better at (like cooking) and a time for planning for the future. As I look at the picture I try to think of more creative ways to pass these winter months indoors and I’m brainstorming ideas for my son’s symbolic garden plan. What things can we do this month to prepare for spring? What things can I teach him or work with him on that I may not have time for when the weather is nice?
My son has no formal “language” and limited communication skills. His receptive skills are much higher when we use both ASL and spoken English. The combination of obstacles he’s had to face make communication his biggest challenge. Stephen has a history of combined vision and hearing impairment and he is legally deafblind. He was diagnosed with Cortical Vision Impairment (CVI) at 8 months old, and then with Autism at around 18 months, then at age 2 with moderate to severe unilateral hearing loss (deaf on the right side.)
Stephen still has issues that decrease his usable vision and hearing and it is now more difficult to get the services he needs. Improvement in his vision and hearing have been both a blessing and a curse. He has learned to navigate the world as a deafblind child and is now expected to forget what he’s learned and just start using his vision and hearing. The doctors have not been able to provide as much useful information about Stephen’s condition as we would like. In this world of technology we expect doctors and medical professionals to have all the answers, and we’re disappointed when they don’t. So we’re forced to take a more creative approach and imagine all of the possible outcomes and what they would mean for our son.
So we press forward, tying to build consistency in the use of language – spoken, signed, and symbolic (PECS – Picture Exchange Communication System.) We had to change AAC (augmentative and alternative communication) apps because the app Stephen loved wasn’t appropriate for him. After months of work adding photos and recording our voices, Stephen deleted the app. Unfortunately the app did not have a backup function or restrictions (a.k.a. parental controls) so all of our work was lost. Now Stephen will need to learn a new app. We decided on Proloquo2go because of the full function, pre-built and customizable options, as well as the ability to backup and sync, not to mention a full range of restrictions to prevent him from making changes and deleting things. Of course this makes the app much more boring for Stephen – there are no click start – stop sounds to self stimulate to, and he cannot press the same button over and over because we’ve restricted him. We are very happy with our choice of communication app, but we will now need to work toward getting Stephen motivated to use this new app that can grow with him all the way to adulthood.
Now is the time to start laminating those symbolstix PECS I printed out and getting our materials ready. We can add them as we learn them if we have the materials (or at least some materials) ready ahead of time. Soon it will be time for Challenger Little League and we won’t have time for all these indoor activities… (More on teaching learners with multiple special needs here: http://teachinglearnerswithmultipleneeds.blogspot.com/2011/02/symbolstix-are-everywhere.html )
Exposure to children with a range of abilities and disabilities is key for Stephen. He will most likely need to navigate the world of the blind, the world of the seeing, the world of the deaf, and the world of the hearing. He will no doubt, have an unusual perception of the world around him.
Image courtesy of Creative Commons and Daily Post
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.