We were so fortunate to have some wonderful teachers in Don’s early years. He started pre-school at 3 years old in order to learn how to use an AAC device. AAC means alternative augmentative communication device or as we called it, the “talker”. I chose his school because Cheryl Garavalia, the preschool teacher, had obtained a grant to pay for talking machines and training so her students could learn how to use them. Before he even entered school Don was tested and his device had been ordered.
So began our journey into academics. My goal was to have Don be able to stay with his peers. My feeling was that to be part of society he needed to learn about friendships and keep up with his social skills. The best chance to do that was to be right in there with children his age. Physical skills, and even academics could happen other places or at later times, but there was no replacement for the built in school environment for interacting with friends.
I felt so strongly about this that when Don started at his special preschool where he would learn to use the talker and computer (at 3 years old!!!) I also started him at a regular pre-school my daughter had previously attended. Two afternoons a week he went with kids with NO special needs so he could get the best of both worlds.
Once he got into kindergarten the talker and a computer allowed him to complete his schoolwork fairly independently and he could socialize and participate in all the class activities, recesses, field trips, and fun.
I’m going to post a series of articles covering our school experience starting with these three:
How did we talk about Don’s disability?
How did communication happen?
What happened when he could not keep up with the academics? (Remediation vs. compensation)
Part 1 – How did we talk about Don’s disability?
We realized in the regular pre-school that other children had questions that needed addressed. We quickly learned that if we were pro-active and open to educating others it was a much more positive experience than waiting for the dreaded “what’s wrong with him” question. I learned early on that I was willing to push myself way out of my comfort zone if it was going to make a difference for my child. So, even though I was not an extroverted person, I began walking around with a smile, meeting people’s eyes and welcoming contact from complete strangers. Trips through the mall usually included at least 2 or 3 stops to chat with well-meaning adults or curious children. On bad days I would still charge along with my eyes down, moving fast so I wouldn’t see the looks and stares – but if I could open doors for Don by being welcoming then I was going to do it, most of the time. I later learned that this became a model for his sister and for Don to follow as they dealt with these issues independently as they got older. It was worth the effort.
So – smiling, saying hello – it didn’t eliminate the “what’s wrong with him” question but I’d grit my teeth and smile again and say “nothing is wrong at all. Are you wondering why he is in this wheelchair?” Most children’s experience of wheelchairs and medical equipment is limited to medical settings and elderly persons. They often wonder if someday they might be in this situation too. When Don was really small I’d just say “When he was born he got a hurt in his brain so he has trouble telling his muscles what to do. The wheelchair makes it so he can get around like you do with your feet when you walk”. At 2 years old my son had his first power wheelchair so most kids thought that was pretty cool. I even heard quite a few times – “Wow mom – I wish I could have one of those”. My internal dialog responded “Grrrrr. No you don’t”.
Having the manual chair or the power chair really made quite a difference. Adults were clear that something was definitely special. Before we got them Don used a stroller with extra support I made by covering foam with fabric. In his stroller, or when I’d run in the store with him carried against my shoulder, I could feel that they weren’t sure what was different. The fact that he couldn’t lift his head once caused a gentleman to scold him for “making his mom carry him when he was such a big guy”, and often people would say – “oh, is he tired?”. Once we got the two chairs they knew that they were looking at a special situation and instead of feeling the long looks as people tried to figure things out we found that many people would say hello. That’s how I got started being the disability ombudsperson.
What helped was having something positive for well meaning people to comment on. It might be cool sunglasses, stickers, the latest nike shoes, that cute levi jacket, a baseball cap, or an eye popping bright yellow wheelchair. Later when he was old enough it was Don’s service dog Tarella. She was a gorgeous golden retriever/lab cross. People want to make contact in a positive way and if you give them something to relate to it gives them a conversation starter. The dog was such an attraction and source of envy that we had to carry post cards with her picture to give out just to gracefully move on from the crowd that often formed.
When it was time to move into a mainstream kindergarten class we got great advice from the pre-school teacher. We made a video and she or I would go talk to the children about what to expect when Don joined them. We asked Don how he wanted his disability to be described. Out of three or four choices he chose “I have an injury in my brain that makes it hard for my brain to talk to my muscles.” Kids didn’t have too many questions but it definitely helped them t welcome him the next day.
In first grade Don was up in front of the class and we presented together. No video was needed and they had a lot more questions. I got a chuckle out of “how does he sleep”. I could tell that they did not know how to picture him out of the chair. I asked him what he wanted me to say and they got the idea that he could make decisions like that. We talked about how much he liked pizza, what his favorite cartoons were and things that let them see that he was just like them, only he couldn’t move the way they could. One of the things I told them was that he had some different ways of communicating and we demonstrated what his “yes” and “no’ sounded and looked like. I challenged them to ask him some yes/no questions right then so they could see how he could answer. Later, I heard some say “do you want to play with me? yes or no?” It was a very fun way to launch him being part of things.
As Don got older there were fewer children at school to introduce to him so most of our talks about disability became at the store or park. I’d watch for the timing, and if a child looked like they were trying to figure Don out I’d ask them if they wanted to ask about why he was in the wheelchair. Most said yes. I’d give a sentence or two and offer some suggestions for how they could play with him. I was able to help Don be included and overhearing the kids later say “Mom, I played with him and he’s my friend” really made my/our day. It helped that we were always the ones with the really cool sand toys to share.
I noticed as my children grew older that they worked together to continue to assure that Don had a place in any group. Though she hated crowds his sister even accompanied him to high school dances so he wouldn’t have to have an adult hanging around. It has been a lot of effort to extend ourselves so much but very worthwhile.
Don is by nature far more sociable than me, and he feels completely comfortable now at college age going into a group of people he doesn’t know. As a young adult he doesn’t feel much need to explain himself but he is very articulate if he ever has the need to.