When I was in my substitute teaching days a friend talked me into subbing for our county’s special needs school. Before you go on the list of substitutes, you spend a day observing the different classes. I’m positive this day is meant to give you a chance to see if you really want to be there. I was hesitant, but ended up being on their sub list. Over the course of the year I was there several times and became more comfortable around the non-verbal, wheelchair-bound, severely disabled children.
Sometime in the first few years of marriage I started to wonder if that whole experience was a precursor to a disabled child of my own. This wasn’t something that I actively worried about, just a “hmm…I really hope not” in the back of my mind. I know that the parents of all of these children I had worked with saw them as complete blessings. I know this because I saw them together. I knew that God would give me such a love for any child He sent me, but still I really hoped for ‘normal’ children.
I didn’t get them.
None of my children are outwardly disabled. My oldest only has mild sensory issues which mostly involve needing to touch things, and thus is ‘normal’. My middle child has Sensory Processing Disorder (SPD) and it caused all kinds of “behavior” issues. My youngest child has medium sensory issues and has expressive language disorder and apraxia: 3 years of speech therapy ending in first grade and 6 months of OT. The apraxia still affects his spelling and the sensory affects his handwriting (childish for his years).
Kindergarten was difficult for my son. He couldn’t speak in a way that many people outside of our family could understand. In the Christmas program, the child after him repeated my son’s line so that the audience would understand. Many kids thought him odd and a few told him so. In second and third grades, we thought he was a lazy speller until the day I was helping him study and heard him tacking t’s, l’s, r’s, and other strong sounds on the end of words which he’d been able to spell just a moment before. Fortunately I hadn’t thrown any school papers out yet that year and dug out old spelling tests. Sure enough, this was a consistent trend. A little searching on the web and the lights popped on as the spelling issue tied back to the apraxia which had made speech difficult. He’s in seventh grade now and still struggles with spelling and writing.
My middle child, DD2, is a high school sophomore and is finally getting to a point of being in control of her sensory reactions a good share of the time, and the ‘behavior’ outbursts are rare and much milder than before. It’s been a long road, and I wish we had known the root issue long before she was 9 1/2, but you can’t change history. When we pulled her out of school, it was due to an incident with the teacher, and one of the students we spoke with (clarifying the situation from as many sets of eyes as possible) was honest enough to say, “A lot of kids think she’s crazy”. That’s not an easy thing to hear about your child, but we could understand where that thought came from.
The teacher had been way out of line and the only positive of the situation is that it turned out DD2 really needed the home school environment to thrive. Public school was too loud, and her desk was too close to others even after a repeated request for some separation. In fourth grade, at the principal’s suggestion, I placed two stress balls in her desk (one hard and nubby, one soft and squishy) for when she was upset/frustrated. Her fourth grade teacher – in front of the class – asked her one day if she was “playing with her toys”. I had earlier stressed to this teacher that we referred to these items as tools, never toys, as we didn’t want DD2 to see them as toys, and I’d been very clear that DD2 is easily embarrassed. This particular teacher had been a counselor prior to teaching. Her poor clients.
It bothers me greatly when I see an article about a child with autism, SPD, ADD, or other similar “invisible” issues and the responses that come to said article are “That child needs some stern discipline. They need to be socialized. They just need to get over it.” and so on. The people who make these comments can’t ever have lived closely to anyone who deals with these problems. My daughter has always known right and wrong and was always mortified after a big sensory reaction – especially in public. Discipline can’t stop the reactions. She’s had to learn to feel the reactions starting and learn ways to diffuse the reaction early on. She’s been learning how to set a task aside early in the frustration before she’s to the point of blowing up. That takes a lot of time and effort and self-training. Parents facilitate the learning and training, but the child living with the disorder is the one doing the hardest work. I suppose you could argue that it does take discipline to do this. Okay, but not in the sense that the world sees the term discipline.
There was one incident when DD2 was four (prior to our knowing that she wasn’t simply willful). She would not get out of the van when we needed to pick up her sister. I took away every toy, every book, and all tv. She never got out of the van. A friend brought our daughter to us. DD2 saw all of her things removed from her room and didn’t fuss. She took her week-long punishment like a champion, even when the other two watched a movie she hadn’t seen. She knew she was in the wrong at the time of the incident, but couldn’t change her behavior. The punishment was severe but didn’t do a thing to correct the situation.
There have been days/weeks/months/years when I have been exhausted. Speech therapy was draining. I felt awful, but at times would have to tell my son that I couldn’t listen to him and concentrate on driving at the same time. It was true. It took a lot of focus to really hear his words without asking him to constantly repeat. It was draining. He graduated out of speech and a few months later DD2 began OT for her SPD. Home school has been a blessing and a challenge. I’m so thankful that I have a teaching background, and that I have sensory issues (I thought I was just odd growing up) so I can truly empathize. Being able to adjust school to SPD has made a huge difference. She is able to change the subject being worked on when needed instead of waiting for the bell to ring, doesn’t have to fuss with a combination lock between classes, and if the day is really rough it can be time to read her literature right then laying down with a cat beside her to pet.
My sister once criticized, “You can’t just take a break to pet the cat in the middle of the day!” Well, maybe you can. This child wants to be a veterinarian.