Tuesday, July 3, 2012

The other shoe drops...

I've been awfully quiet of late.  Perhaps for some of you that's a good thing.

For many parents, once an autism diagnosis is given they have to ask themselves a very difficult question:  should we have more children?  This is a tough question to answer.  The reason why it's asked is because autism has a strong genetic basis, and based on recent research the risk of having another affected child is 25%.  Some parents might be willing to play these odds... a 75% win rate is pretty good, after all.

Having unaffected siblings is attractive for so many reasons.  As a parent, you have a special needs child but you also have typical children, which can somewhat dampen the heartache of having a child with autism.  Selfishly, this means you can experience having a typical parent-child relationship.  Some days, you can leave your special needs child at home and experience life as a "typical family" (I'm sorry if this offends some of you, but I am writing how I feel and this is the truth.)

Although I would never choose to expect or burden T with taking care of A when we die, I would hope that he would love her enough to do so.  So in that way, having a typical sibling is very comforting.

Except he isn't.

We have been concerned with T for several months now, on and off.  He has always lined up his toys, but his social communication was becoming more and more inappropriate.  He never greeted us, didn't use "mommy and daddy" without prompting, and had a lot of delayed echolalia.  Add in his difficulty with change, transition and insistence on sameness, and blammo, you have... autism.  Again.

Luckily, he is mild and will be getting the "PDD-NOS" designation.  He is fully verbal and has some great social skills.  He's a great kid and I don't love him any less, but I grieve for him because I know his life will be harder... and for us too. 

I thought this would be easier than the first time around, but it's not.  I'm still angry.  I'm still sad.  But it is what it is.

"Happiness can only exist in acceptance."
   - George Orwell 


  1. I don't know what to say. My stomach dropped when I saw the title of you post. I am sorry for all the struggles this may involve but hopeful that his milder diagnosis will allow for some amazing possibilities. I teach high school and every year I have one or two students who started out with an Autism or PDD-NOS diagnosis. You have every right to be angry. It is not fair. but the Orwell quote is also very fitting. Wishing you and your family all the best, E

  2. I want to say something comforting. This is so tough. He is still very young. My son was diagnosed severe autistic and had NO language, but he has come such a long way. Life finds a new normal. I wish it wasn't like that, because I wish the same for myself. Only God knows what he has in store for all of us, we are just left with no choice but to submit to that plan.

    Keep us posted. Love to your family.

  3. i will pray for u and your beautiful children. your courage and strength amazes me. u r so wonderful. even if they dont realize it, ur kids r so lucky to have u

  4. You are definitely in my thoughts! I am the mom of two special needs children, one with High Functioning Autism, and one with Cerebral Palsy and Developmental delays. God bless you and your family as you process this news.


  5. I am fifty-two. My ASD brother is right behind me...and I also have an ASD mother. In the early 1960's I was diagnosed MR...today the diagnosis might have been ASD. Who knows. I am NT with aging parents an ASD son and a disabled ASD brother. It can be difficult, but it is my life, and I never ever think to judge my parents or anyone else for being in a position to have to care for so many people. I do wish I had more time for myself...had had more opportunity, but this is my life and I will live it well. a very pragmatic father encouraged me to travel young and play young, while he and my mother were still able to care for my brother...and that was the most wonderful piece of advice I've ever had.

    People want children and have children. That's what makes us people. And so, that is what my mother said. We had children because...that's what lots of people do. Some of it is joyful and none of it is predictable or perfect. Parenting is a crap shoot...always...genetics aside!!

    For now, feel your anger, acknowledge frustration, and enjoy your children. Plan well. Live well. Guilt is a nowhere place and neither you nor your children need to live there.

  6. I feel the pain in your heart. We recently learned that our nine year old has asperger's, and he is the oldest of our four kids. I find myself watching the development of our youngest and worrying over anything that isn't typical.

  7. I pray for all us who deal with our loved ones who have Autism and care for those with ASD that we find the peace and strength throughout our journey. We are the chosen ones. We gave to believe that we have been given this path for a reason.

  8. As a mom of a child with ASD, I feel your pain and respect and admire your devotion and honesty in dealing with the ups and downs of this disorder. We found out this year that our son is positive for the MTHFR 677T mutation and now have more power to help him heal. This mutation was blocking his ability to break down folate and it limited his ability to create serotonin. If I had one wish, it would be that we had this medical info years ago as it is best when treated when they are younger. I would urge anyone with an ASD child to get screened for this genetic mutation. Good luck and lots of love!

  9. (((hugs))) Your MoGo family is here to support you in ANY way that we can!