My ten-year-old daughter with Asperger’s syndrome just got her period. When my daughter was diagnosed several years ago as being on the Autism spectrum, I only thought so far as the toddler/elementary school years. Everyday things like getting dressed and playing with other kids were already such challenges, I just couldn’t wrap my head around what would happen when my daughter, you know, becomes a woman.
With the birth of our son we joined the ranks of that undefined, amorphous, limitless group of “special needs parents.” Within the first days of the NICU I knew there would be challenges, but I could not ever imagine the constituency of belonging to such a group. A stat perhaps. A label. A stigma?
My two-and-a-half-year-old was born prematurely and currently has a few different disabilities and setbacks that we’re working with. I’m always on the lookout for children’s books that prominently and positively feature children with disabilities. Unfortunately, it seems like I can ONLY find them at hospitals — and we can’t take those home with us.
How do you explain the concept of colours to a small child who had never seen anything but black? When we got told that there was to be a blind child at our kindergarten class, we got sent to a course in how to best stimulate such a child. The number one thing we learned was to play with her other senses, which is often more developed than in people with normal eye sight.
I think having a child with a disability is similar to learning how to run. We line up and listen to a whole lot of people tell us what we should do. Sometimes we hear them. Often we don’t. They are usually talking from their own experience anyway and only slivers of what they say will have real applicable value to ourselves. Then we run: we try and try and try and try.
Life with a weird kid is isolating. You spend a lot of time tamping down that parental anxiety when your kid is freaking out and it seems like all the other kids are sitting nicely and cooperating. You explain over and over that your kid just doesn’t like circle time or story time or most organized activities. I’ve learned over time to respect my son and the way he functions, and there are a lot of activities we simply cannot do because he can’t handle them. I’ve learned that the reason it seems like all the other kids can cope is that the parents with the weird kids are staying home. I’ve felt completely and utterly alone as seemingly everyone else went around with their perfectly normal, average kid.
Fans of The Princess Bride will love this list of 17 ways the film has helped her parent children with autism from Bec, author of the blog Snagglebox. Bec has a fifteen-year-old and a twelve-year-old son who both have autism, and has been able to use lessons from the family fave in her favor.
I went in to parenthood prepared. I had a decent amount of baby experience and figured I was as ready as someone can be to have your life up-ended by a tiny human. My husband and I discussed cloth diapering (we wanted to try it), sleeping arrangements (pack-n-play and crib only) and birth plans (unmedicated hospital birth with a doula). I knew that all of our plans needed some degree of flexibility as we figured out what worked best for us. Then our fuss-a-saurus, E, was born.