For behavior therapy sessions we are often encouraged to include/integrate a peer model and take public outings. Yesterday we went to the neighborhood park (as we often do) armed with myself, our behavior therapist (who is amazing), my son, and his friend. As an aside, I purposefully chose the word friend instead of "typical peer model" because of the impact that word has in print. There it is... Friend. This girl is amazing. A role-model, blessing, warrior-poet, and angel all rolled into one tidy little 6 year old package. I could not say enough how much she means to my family and, more importantly, to my son. I promise I will write her Swan Song in another blog.
So, we're at the park and Jack, my son, has found a new friend. A tall, gawky, red-head, boy who might be 13 or so. Jack and his new friend have developed a chasing, tag-like game. They are running all over the park, squealing with the delight that only children have. At a quiet moment, I asked my son if he was having fun with his new friend. "Yes". "Why do you like him so much?" "Daddy, he is like me. He is different like me".
Jack's new friend was also autistic. His squeals suggested he was non-verbal and closer to the severe end of the spectrum.
My heart instantly sank. Not because I did or didn't want Jack to hang out with other children with disabilities, not because I feared for his safety, or even because I might be looking at him in 8 years, but because he had said he was "different, like me".
"Why do you say that?" I managed to ask around the lump in my throat.
"His name is Jack, too"
I verified with his mother that it indeed was and the "Autism Speaks" sticker on their car confirmed my diagnosis.
I've been in this world for a little bit now... I consider myself a veteran of raising a child with special needs. Some of my peers do. Some of my readers do. Some of my family does.
I openly admit the hardest thing I will ever have to do is tell my son he has autism. I will have to tell him that he is different and mommy, daddy, and his sister are not. I will have to accept responsibility for all the choices we have made for him, good and bad.
I am not ready for that.
It didn't happen yesterday, it didn't happen today, but it will happen tomorrow.
I just keep praying that Tomorrow is a long time.
Thank you. And thank you for reading.
ReplyDeleteI just clicked a link from another blogger Autism Daddy. My son is moderately Autistic and non verbal. CJ does not have friends but he is starting to open up to others and approaches people and not know what to do next. That is huge for him. Reading this brought tears to my eyes. CJ is nearly 6 and has no idea that he is different. I also fear the day we have to break the news to him. Right now I tell my 3 kids they are awesome for who they are.
ReplyDeleteThanks for sharing and reading. We'll all get through it somehow right? I received a lot of good comments from both parents and kids detailing their stories around this.
DeleteBig thank you to Autism Daddy...I just found your blog (love your other posts). This hit my core! I know one day we will have to have this talk with our son (6, high functioning, verbal). I'll never be ready for it.
ReplyDeleteI've received so many comments (mostly on the Facebook page) from people with similar fears. It's comforting to know I am not the only one who feels this way. Thanks for commenting.
DeleteMy 22 year old Aspergers son was incorrectly diagnosed early in life with a non-spectrum disorder and was never explicitly aware of his differences. We had long suspected Aspergers but avoided the issue and the confrontation we thought it would cause.
ReplyDeleteHe was having trouble getting employed, did not present well at interviews and generally lacked presence and self esteem.
We had him re-diagnosed and counselled. Once he had a 'label' for his own behaviors, his self esteem improved and he was employed within 2 months. He now had better mental tools for coping.
I wish we'd done it earlier.
Don't necessarily fear the discussion, self awareness can be a powerful thing too.
Thank you so much for posting this comment. It gives me perspective. Thanks.
DeleteI don't know... I guess I don't fear this. Not really sure how the direct connection of "I have Down syndrome" will be made or when, but it's such a big part of our lives (so many friends, so active in the community, etc so "Down syndrome" is a regular vocab word around here, yet it is sort of inherently woven in everything we do so it kind of disappears at the same time - makes no sense, I know) that I expect it will just sort of naturally happen and the opportunity will present itself. I think that this knowledge will ultimately empower him - and I have no doubt that however you discuss this with Jack it won't make him feel marginalized. I think that's the big difference in my mind: understanding, accepting, and embracing "different" vs. being marginalized for being different. Sure, our kids will be marginalized in many ways by many people/systems throughout their lives, but discussing the differences won't necessarily make him feel bad. I think it just makes parents feel bad, like talking about it flips some switch. Maybe it does and I'm totally naive.
ReplyDeleteOne more thought: I bet you anything that the "moment" this issue comes up, it will be because Jack initiates it. I bet he will take note of some differences, and at some point simply ask you (or give you signs that he is curious and wants to know). He will already fundamentally understand, and will simply be looking for context, clarification, the bigger picture of "ok, so what does this mean?" I see how that could be difficult, but at the same time, it just gives him a better understanding of where he already is. Ya know?
ReplyDeleteMy daughter is 4. Preverbal, with some functional speech and mostly echolalia. I have told her she has autism. I think it;s most important to our children to own the word, accept it, and revel in their own uniqueness. I have no idea if she understands me. But I put it like this "You have Autism baby, and that's what makes some things so hard for oyu, but it's als what makes you unique and special, and no less than any one else"
ReplyDeleteI will keep explaining it to her. If I'm afraid of it, then she will be too.
Just saw this post since you shared it again on your Facebook page. My little guy is 7. I suspect that our tomorrow is almost here. He made a similar comment recently about being different. It's wonderful to watch them grow. He's interacting with other kids more, and wanting to connect with them and make friends. As he does that, he's also becoming more self-aware, and realizing that not everyone is the same. I don't know whether fear is the right word for how I'm feeling about the conversation, but definitely nervous. Enjoying your blog!
ReplyDelete