When someone asks me this about Shelby I hesitate. I know what they mean, will she ever speak, be able to relate to others or master the fine motor skills to cut with scissors. But the answer is complicated.
The short answer: we don’t know.
The long answer I am afraid I will bore people with. While we don’t know for sure if Shelby will ever speak or have enough fine motor skills to write, the therapy regimen she is in now has proved very fruitful for many of her peers. That being said, it’s not a guarantee.
Just months shy of his fifth birthday, a neighbor’s son has begun to speak and even potty train. We are ecstatic. None of us could have predicted this. But I’m not naive enough to believe that means Shelby will be doing the same by her 5th birthday. His mother has been a true ally in this journey called parenting a child with autism. And yesterday, she had truly kind words for me. She told me that Shelby has lots of good things to look forward to. And I know this is true.
The future is overwhelming for all parents but it takes on a unique panicky feel with the parents of an autistic child. I feel like the undertow is pulling me under fast if I try to think if Shelby will be able to graduate from high school or live on her own. So I have to stop and just focus on right now. If I don’t , first I miss what’s going on right now, and then I have a panic attack. That’s no good for anyone.
“Normal” is a relative term even when describing non-autistic children. For some people a normal child reads and communes with nature. For others, a normal child eats sugary processed cereals and plays contact sports. And still other believe a normal child does well in school and plays an instrument.
Shelby is unique. If you’ve met one child with autism, you’ve met one child with autism. I’ve had to learn that you can’t necessarily try any and every treatment with your child because it worked with someone else’s child. Think gluten-free diets or chelation therapy. I’ve had so many well-meaning friends and family members to tell me to try this, or talk to this therapist, or buy these DVDs because they worked for someone else’s child. I try to be charitable, but mostly (since I’m human and not up for canonization) I get annoyed. I understand that this certain series of DVDs or books got Child A speaking in complete sentences within six weeks, but it’s a lot of money to invest for me when previous DVD series and books didn’t work. (Most of those types of media are basically the same, btw. If you luck out on one your child responds to well, you are really in luck, but many children just don’t learn well from media.) I appreciate the concern, I really do, but most days it’s enough already.
No one wants Shelby to have a “normal” life more than we do, as her parents, but we realize that her “normal” and our “normal” may never coincide. I had to reconcile within myself that Shelby has a good chance at speaking someday, but there is a decent chance she won’t as well and I have to be okay with that, if it is part of God’s plan. Shelby eats almost exclusively with her hands as part of her sensory processing disorder. Unlike most children, the sensory issue is not with the silverware in her mouth, it’s that she loves the feeling of the food on her hands. All of the occupational therapists we have worked with have let us know that Shelby’s particular sensory issue in this area is extremely difficult to “correct.” But one therapist pointed out that in many parts of the world, this behavior is actually proper eating etiquette. She used Ethiopian cuisine where the people use bread as their tool as an example. While we’d like her to be able to take tea with the queen, it’s not high on our priority list right now, unless it’s the Queen of Ethiopia, I guess.
Who knows, maybe in 20 years, Shelby will be finding a cure for cancer and her name as well-known as Temple Grandin’s. Maybe, but if she’s in a group home or living with us still, that’s okay too. Maybe most of the world doesn’t think she’s normal, but she’s the best Shelby she can be. And we could not ask for more.
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