I met with a wonderful lady by the name of *Kristina back in March of this year to see if I would be interested in participating in a Mentor/Mentee program for parents of children on the spectrum (I never did the program). We talked for quite awhile about my battle to get professionals to listen to me about Diego’s ASD and she shared a story about her brother with Asperger’s who was 17 at that time.
She said that they grew up in a small town where unfortunately a lot of people were not on board or educated enough to help her brother and as a result he had a pretty hard time growing up. In fact she was going to fly her brother and parents out later that month to get the ‘official’ diagnosis from that fancy (jerk off) neuro psych that I was coincidentally taking D to as well. It seemed to me that her younger brother was her inspiration to go into a career working with children on the spectrum and helping their families.
Her love for her brother poured out of each word as she spoke about him. I remember telling her that I thought that it was beautiful that she loved him so much and that I hoped Lyric would feel the same when he was older.
Later I ran into her again and she said that her brother did receive a diagnosis of Asperger’s and that he was having a rough time of it. I told her that I could only imagine how hard it was for him not to feel ‘normal’ living in such a tiny town. Not a lot of room for escape I would imagine.
Now here we are in December and I received an email yesterday that made my heart drop to my stomach.
Kristina’s brother took his life 3 months ago.
She was sending an email invite to celebrate his life this December 3rd, which would have been his 18th birthday. When he visited her out here he fell in love with a local amusement park and that is where the celebration is going to be this Friday. I didn’t know them well at all, but that email shook me to the core.
My worst nightmare is that Diego grows up thinking that he is less because of his differences and that this thinking will lead to depression and isolation. He is already genetically pre disposed to depression as I have had my battles and so has a lot of my family.
I know that this email isn’t about Diego, I know that we have found out about his ASD far sooner than that sweet boy, I know THAT THIS ISN”T OUR FUTURE.
It just hits so close to home, especially since right before reading that email Diego and I had a pretty difficult exchange. We were sitting around watching some silly cartoon and the following ensued:
D: “*Tomas said he will not be my twin friend if I keep doing it”
(Tomas isn’t typically a kid who would say this)
Me: “doing what??”
Me: “Oh honey were you touching Tomas’ ear?”
D: “I like ears”
Me: “I know baby, but sometimes people don’t want to be touched and maybe Tomas didn’t like it”
Me: ” So maybe the next time you want to touch Tomas’ ear you can ask him. But if he says no, you have to try your hardest not to do it. I think Tomas will always be your friend, he just might not like having his ears touched.”
D: “Tomas is my twin friend”
Me: “Yes baby, he is.”
Then Diego hopped on my lap, gave me a hug, and rubbed on both of my ears for a good 15 minutes.
Diego has been with the kids in his class since they were all at least two years old and honestly the kids are very accepting of Diego’s quirks. I’m sure poor little Tomas was just over it that day as he is the most understanding of Diego out of all of the kids. But they are getting older, and my fear as we start at a new school next year is that the new kids won’t be as accepting or nice about not wanting their ears touched, the constant dinosaur talk, etc…which in turn will probably start the gears in Diego’s head, then eventually he will figure out he is different and then we enter an entire new realm of ASD challenges.
I haven’t got a full grasp on all of the things that are thrown our way now, what will I do?
Diego is the most amazing child in the universe to me and I can make sure I tell him how wonderful he is everyday, but I can’t be his peer.
I can’t socially accept him like his peers.
I can only pick up the pieces
he is different
I think that tomorrow we will definitely be paying a visit to Kristina’s brother’s favorite place to celebrate his life.
*name change for obvious reasons