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Different Not Less

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??”

D: “ears”

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”

D: silence

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

and

tell him

that

he is different

but NOT less.

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

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About sonidoinquieto

I hate writing bios *bio pending*

13 responses »

  1. I’m am sorry to hear this sad news and like you it hits very close to home. My little man spent so much time isolated from peers as his teachers sad he was to challenging. He missed trips and school activities and I am currenting awaiting the tribunal case for disability discrimination. The point is he has suffered for it. He keeps stating that if he didn’t have aspergers then he wouldbe allowed in class with the”normal” children. It breaks my heart. His also said things like “what’s wrong with me?” “I hate being me”ect.. I pulled him out as he stated hitting himself and his emotional wellbeing was my no1 concern over his already failing education! His just 10 and has made a few friends but only though playing the clown and being up for any dare thrown his way by the other boys. (so friends is a strong word!) I cried Reading your post… I think your love for your son is beautiful as it’s shown in everything you write. Little man used to love feet… I’m pleased to say that’s no more. However he drives everyone and anyone potty with his bus talk… Where I could listen forever. Xx

    Reply
  2. OMG, you must have been in a daze. I’m so sorry.
    I think you did beautifully with talking with Diego about his friend and what’s appropriate and what’s not. My downfall is having the fear of the future all mixed up in the present issues…you did great. Thanks for visiting 🙂

    Reply
  3. Shavon, thank you so much for being such a talent with words. I feel so much for the family of the young man who took his life. How sad that he had no hope, no thoughts of a future beyond his pain. So many young adult with autism, who are bright and wonderful and have much to offer their communities, do not successfully transition after high school. Perhaps we need to start a “It Gets Better” project with individuals with ASD.

    Reply
  4. Oh my God. I am so, so very sorry for your friend.

    The thing that helps me hold it together when I hear stories like this is that we are so blessed that our kids were born in this decade. Autism is everywhere in the news, and the internet is fully integrated into our society. Both of those things help make for a broader culture of understanding and acceptance for our auties. I know it’s over simplifying, but even ten short years ago, autism moms and auties had it so much harder and felt so much more isolated. Things are changing. The tide is turning. Ari Ne’eman is at the White House, for crying out loud.

    It doesn’t minimize Kristina’s brother’s suicide at all, not even a little bit, but hopefully it gives you and other autism moms a little bit of hope that our babies WILL grow up with that sense of “different, not less,” and that society will follow.

    Reply
  5. My heart goes out to *Kristina, and to all families who struggle to get their sweet loved ones the help they need.

    Reply
  6. this is heart breaking. i am so sorry for Kristina and her family.

    Reply
  7. this is heartbreaking. i am so sorry for Kristina and her family.

    Reply
  8. Oh, sweetie. I hope the sun is shining down on the playground as you go to celebrate her brother’s life. I hope the warmth reminds you that Diego’s future can be very bright; he is so young and services and supports are SO much better than it sounds like they were for Kristina’s brother.

    Even if it’s not sunny and warm today, know that there is light and love coming your way. xo

    Reply
  9. This broke my heart. I had to walk away from my computer last night after I read this, but coming back today it makes me think about how lucky our boys are. How lucky we have a diagnosis and can raise them with the true thoughts and words that they are different, not less. My heart breaks for his family.

    Reply
  10. Man…..
    That was hard to read =(
    Love you.

    Reply
  11. Shivon, this post really got to me. There have been a number of suicides recently of young people (not related to autism), all of them struggling to be accepted and liked for who they are. What happened to that boy is so tragic, and just so unnecessary. Loved your take on DNL, and so glad you shared that story with us!

    Reply
  12. I loved your POV and I am totally with you on the Different not less perspective that you want to teach your son
    This is one of the biggest gifts that we have received from Dr Grandin

    Reply

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