Autism is a thief

I have had people reach out about diagnosing/testing their kids and asking if the feelings they are feeling are ok.  Because of the recent outreach, I wanted to post another feelings post.

gloudemans -2
photo by AllyFranzPhotography

I love my kid.  If I was given the choice to have Nolan and Autism or a different child I would keep the autism in a second…that being said, If I could keep this kid and find ways to make Autism (or should I say some of the symptoms) away I would.

Thus far in our life (though time will change what Autism is to us) Autism has been a thief.

Autism stole his voice.  Autism stole his free time.  Autism stole his time home with mom.  Autism stole his relationship with his sister.  Autism stole the day dreams a mom has about prom, college, moving out, marriage.

Nolan was talking.  He was singing and talking and being funny.  He would tell us what he want, tell us his colors, count, alphabet.  He was spelling his name.  He had so much….and then Autism stole it away (for a while).

Nolan spends 30-40 hours a week at therapy.  He has  a full time job and it takes a lot of the fun time away from a cute 3 year old boy whose mom stays home with him.  We see him getting him ready, dinner, and bed.  Yes, many people see their school age child for that amount of time, but this little guy is 3.  He was forced into a grown up schedule much earlier than many. Autism stole his time to be a kid and at home.

Nolan would kiss my belly when I was pregnant.  He gave Stella her paci when she was 3 days old and worked to console her.  I think that was the last time he willingly interacted with her.  He is getting better, but they have far from the loving sibling relationship you ever dream of.

We don’t know if Nolan will be able to talk to people let alone a date to a prom.  We don’t know if Nolan will ever be in a regular classroom and then, in turn, have the same post grad options as his peers.  We don’t know if he will ever be able to live on his own.  We don’t know if he will find someone to spend his life with and marry.  We just don’t know.  The ability to dream is so hard because we just don’t know.

Are these things all still possible? Absolutely.  Therapies, time, and work can all help Nolan to grow and overcome these things.   Will something he loves to do and excels at emerge, making us realize that thing would not be possible with out his autism? More than likely.

That being said, they are not here now, and there is no magic view finder into the future.   We have people ask is there a “prognosis,” some idea of where he may end up.  We don’t, you cant with Autism. Right now, we are working our butts off to cope with the loss while working for the gains.  We are not losing hope, but we are grieving.  We are grieving the loss of things we had and Autism stole.  We WILL celebrate and cheer for every milestone he gains-whatever they may be.

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