Don't Mourn For Us

The following is an excerpt from a presentation Jim Sinclair gave at the 1993 International Conference on Autism.  Jim is Autistic. 

"Autism is not death.  Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child.  What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact.  Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to. 

But not when the child is autistic.  Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child.  This grief is very real, and it needs to be expected and worked through so people can get on with their lives- but it has nothing to do with autism...It isn't about autism, it's about shattered expectations.  

I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups.  In those settings parents learn to come to terms with their loss- not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives.  They learn to accept that their child is gone, forever, and won't be coming back.  Most importantly, they learn not to take out their grief for the lost child on their surviving children.  This is of critical importance when one of those surviving children arrived at the time the child being mourned for died....

That isn't the fault of the autistic child who does exist, and it shouldn't be our burden.  We need and deserve families who can see us and value us for ourselves, not families whose visions of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams.  But don't mourn for us.  We are alive.  We are real. And we're here waiting for you..."

- Jim Sinclair

Six Months Home and Two Years Old.

     Six months home.  It's hard to believe.  It feels like the last six months have flown by and yet it feels like an eternity ago that we stepped off that plane.  The last six months have been a whirlwind. Some of the most difficult and most miraculous times of my life.  We went to Kai's two year check up yesterday and I'm continually amazed at the progress.  Since he's been home Kai has gained three pounds and grown a little over two inches.  He has learned over twenty words and become a master at walking.  He continues to do well in his weekly therapy appointments and we have hope that by the end of the summer we will be down to three instead of four.  His over all health is great, and other than a small out-patient surgery to be circumcised, he shouldn't need any major medical procedures. His head is still a bit of a mystery.  We aren't sure if it will round out over time or stay flat....and most doctors are still unsure if that's a problem or not.  But for now we are leaving it alone.  No surgery. 

     There are still lots of hard days.  Tears without explanation.  Waking up in fear.  Days where I am at a loss.  Days where he seems to reject me.  Where all he does is scream.  We are relearning how to parent.  Relearning how to discipline.  Rethinking how we view behaviors.  But even through the tangled mess of grief, unknowns and imperfect parents there is so much joy and laughter.  I can't wait to see what the next six months bring!!! 

Ellie's 10th Birthday

It's official.  Double digits.  We have a tween in the house.  I still can't believe Ellie is ten.  Last night when I tucked her in I actually found myself crying!  A very rare occasion when a birthday brings me to tears.  Sadly her birthday isn't quite turning out how we had planned.  Her birthday party with friends had to be rescheduled because her siblings were sick, and today, the day of her actual birthday, she is sick.  Thankfully we were able to do our annual birthday shopping trip together before the sickness began.  

This year I actually remembered to do her birthday interview.  It is so much fun to look back through the years to see her answers.....all though it would be an even more precious tradition if mama could actually remember to do it every year.  Oh well.  I will take what I can get! So here it is!  

1)  What is your favorite color: Blue

2) What is your favorite food: Fish sandwiches and mac n' cheese

3) What is your favorite movie :  Annie (the new version)

4) What is your favorite TV show: Inspector Gadget

5) What is your favorite book: Nancy Drew or Betsy Tacy

6) What is your favorite subject in school: Math

7) What is your least favorite subject in school: English

8) What is your favorite thing about Daddy: He's a lot like me

9) What is your favorite thing about Mommy: She is understanding

10) What is your favorite thing about Ava: She's artistic

11) What is your favorite thing about Beckett: He's wild!  

12) What is your favorite thing about London: She is so sassy

13)  What is your favorite thing about Kai:  He likes it when I hold him

14) Who is your best friend: Autumn Acree

15) Where is your favorite place to go: Grami and Papa's house

16) Where is your favorite restaurant: Chick-fil-a

17) What do you want to be when you grow up: A zoo keeper

18) What is your favorite thing that God made: Animals

19) What are you most thankful for: Family.