Saturday, December 26, 2015

The Importance of Awareness; The Beauty of Acceptance

We just got back from visiting friends and family a few days ago. On our trip with multiple get togethers something pretty amazing happened. There were still meltdowns when his senses were assaulted . There was still screaming from time to time when his anxiety got the best of him. There were still tears from communication breakdowns. There was still aggression when communication wasn't working. It was all still there. But there was a difference. There was no staring or gawking. There were no harsh remarks. There was a lot of accommodating and many had their get togethers set up with us in mind. No one batted an eye when he saw a Christmas tree and screamed for presents (at people that had already given him presents the day before). We worked through it all and I didn't feel embarrassed or on edge. They got it. And because they got it there was also a lot of laughter. There were a lot of moments that he enjoyed. He made memories and made friends because they accepted him for him.
The reason they got it: Every friend and family member we visited follow my blog and are learning as much as they can about what he goes through with his senses and his communication issues. They also know how hard he has worked to be doing as well as he is. That is awareness, people.

"Awareness" is becoming a bad word in autism/disability groups. One of my favorite groups is imploding due to this argument and I have since left the group, because no one has time for circular arguments that go nowhere. Some self advocates are asserting that parents aren't supposed to talk or write about a disability that isn't their own, an argument that completely disregards the reality that some of our children may not ever be able to advocate for themselves. We are not mommy martyrs for telling about the hard days. We are not objectifying those with disabilities to make us feel better about ourselves when we share stories of accommodation and acceptance. We are, instead, showing the world what accommodation and acceptance looks like and how it can make a difference for individuals with disabilities.
Acceptance is, of course, more crucial than awareness. But how can those outside of our community accept what they do not know? How can they understand what we do not tell them? Had I never laid out what sensory overload looks like, our friends may have thought he was just weird or a brat. Had I not explained that aggression can be part of one of his meltdowns, they may have thought he was just aggressing to get his way. Had I not explained his rigidity and need for meeting expectations, their feelings may have been hurt when he yelled for more presents. Do not discount awareness; there is something to it. Awareness lays the path to acceptance, whether or not others choose to follow that path is up to them.
To those that went the extra mile to make us not only feel accepted, but welcomed, I say thank you. And I say thank you because it's not enough to just know about his differences, it means so much more to accept them.

Friday, December 4, 2015

Today he rode the short bus and it was perfect

I will be the first to admit there was a time in my life when the thought of my child riding the "short bus" felt like a devastating blow.  It wasn't so much the stigma attached to it as it was the far reaching implications of such a need and the realization that things would be so different for our family.  When we realized we were going down a special education path I envied my friends who would worry about things like PTA meetings and bake sales.  Following our son's autism diagnosis and prognosis I worried endlessly about his future.  I worried everyday about how tomorrow would unfold.  The weight of so many unknowns was palpable.

As our son's aggression, anxiety and sensory issues worsened and interfered hourly with his quality of life my worries early on about giving up "normal" seemed petty and ignorant.  As I watched him so often crippled by his fear and pained by his senses, the only thing that mattered was helping him through every anxious moment and holding on to the happy moments that were so far and few between.  During the harder days when he was without services, without mental health care and without proper education, I didn't have enough energy to think about tomorrow or ten years from now.  I was spent just trying to keep everyone in our house safe from one minute to the next, including our son who would self-injure as well as aggress towards his siblings and me.

With his anxiety taking over, the hope of him attending a regular school in a special ed classroom started slipping away.  I was no longer obsessed with him mainstreaming or "fixing" his delays, that was the least of our problems.  When he shook, and screamed and got sick when we all tried to go on a bus for a special outing, I knew he probably would never ride the bus even if he could attend public school.  During the weeks he couldn't even leave the house without incident or sensory overload that affected him for days, I would have fully embraced my son going willingly on a bus (whatever size) to a school that could accommodate him.

So today when he rode the short bus for the first time on a class field trip, I had tears in my eyes and hope in my heart.  He looked back at me about a hundred times to make sure I was sitting in the seat behind him, but he smiled and got a thrill when the bus accelerated.  Guiding him onto the bus and asking him to sit next to him was a little boy that has taken to him since the start of the year. As the teacher explained all that was to come, my son started rocking and his friend grabbed his hand.  I watched them walk together in the hallway and heard this sweet boy tell him the bus wouldn't be so scary.  As we pulled away from the school he told my son he could cover his ears when we got to our destination if it was too loud.

I couldn't ask for a better friend for him.  A friend that is so accepting and aware of the issues my son faces.  A friend who has Treacher Collins Syndrome and partial deafness and has overcome so much already in his own young life.  The other children talked to my son, too.  The boy who sat across the aisle from them called for my boy by name to look out his window at the Christmas lights we were passing.  There was a time when I was so leery of special ed classes and the special bus, but now I see a safe space where my son is not judged.  He is not only accepted; he is liked.  He has friends.    

One of his other friends could not go today due to a seizure and hospital stay.   So, yes, you come to a point where you are not only okay with your child riding the short bus you are ecstatic that he can and did.  Right now seeing him happy and healthy, growing and learning is everything I could ask for and anything else is just noise.  We have hard days.  But today was a good day.  Today he rode the short bus and it was perfect.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...