So Joy- Khalid’s full-time caregiver and ABA therapist- is on vacation for a month as of yesterday, which was also Khalid’s first day of school, which was also the day that Iman fell down in the hallway and knocked loose and fractured one of her front teeth.
This morning was our first day without Joy, as well as the first day that I attempted to run Khalid through his ABA program, as well as have a three-hour instructional design meeting for my ‘real’ job and then take Iman for an emergency dental appointment.
The morning program was educational, in that I learned that it will take a whole lot more than her whiteboard markers to give me Joy’s superpowers. The laminator chewed up my flash cards and spat them back out in a smelly, melted mess. The kids got bored when I took too long to find the next program materials and Khalid knocked a cup of tea into a box of 96 crayons. Why was the teacher drinking tea in class? Because the teacher was a sleepy amateur, that’s why.
The subsequent meeting was interesting, in that Iman sat in with the Business Development Manager and I to color and contribute her professional opinion on the course development- which was generally about butterflies, the beach, and where her marker went. Also, she told the BDM that she was snotty. And she was.
The dental appointment went well in that there was little dentistry involved- Iman’s mouth needs three weeks to heal so that the tooth is no longer wobbly before they perform a root canal and remove the lower-half that is no longer viable. (It cracked straight across)
And now, Khalid’s first day of school.
I think he may have had fun, but Joy and I were quite nervous, especially since Khalid is not really enrolled- he’s being observed for an hour a day, two to three times a week in the KG class to determine whether he can be there without causing massive disruption to the ‘normal’ kids. I don’t remember kindergarten being that tense when I was a kid, but then the principal and school counselor probably weren’t both in the class to observe me. And the teachers probably didn’t have the wary, anxious look of two women with 28 three and a half year olds who have just been handed the Unknown Special Needs Quantity X. Khalid is a year older and a head taller than the other children. His academic scores put him in second grade, but his verbal and social scores place him in nursery, so KG-1 is somewhere in the middle and our goal is to help bring his social and verbal scores up while maintaining his academic scores at home.
He had to be interviewed to be let in. We had to submit his psychological assessment, sign a legal disclaimer, take official responsibility to protect other students from him and answer questions about how loud, how often, how intensely and for what reasons he could freak out. We spent three hours on the first day with the school counselor and the principal and the registrar, and while I am grateful, Alhamdulillah, and relieved that he’s being given a chance to go to a ‘normal’ school, my maternal hackles have been raised in indignation for Khalid.
(He pinched Joy, will he pinch other children?)
(The assessment mentions self-injury, can you tell us about that?)
(Why are his academics so far ahead? Why haven’t you been pushing his social and verbal instead?)
[Gee, maybe he’s a classical case of autism?]
(If you even think that he might be about to make noise, just take him out of the class.)
I’m sure Khalid wasn’t offended, at least not by anything the staff said. Instead, he was upset when he walked into the class and noticed that the letter C was missing from the alphabet lineup on the wall. He asked where it was, noticed it on the center of the board, and attempted to put it back where it belonged. We spent a few minutes gently distracting him away from the missing C (and some noise was involved) but then he noticed that the word Sunday was out of place in the days of the week lineup. It was on another wall because it had a special schedule. He tried to pull that down too.
Other children were drinking juice, so he asked for one by writing out J- U- I- C- E with his finger in air-letters a foot tall. You should have seen how fast Joy and I rushed to get him some. He sat during snack-time eating his apple and drinking, reading every written word and chart on the wall from his seat at the Brown Bears table while other children chatted and fussed with their food and had the kind of conversations that kids in kindergarten do. One little girl peed in her chair and was taken away crying. One little boy got scolded by the teacher, and in turn, Khalid scolded the teacher. I don’t think that went over well.
The principal came in and asked Khalid how he was doing. He answered ‘Fine!’ and Joy and I gave each other looks of desperate encouragement and relief. When it was time to go out and play, he did a reasonable job of staying in line with the other kids as long as Joy and I were flanking him on both sides. Khalid climbed and ran and went down the slides, Joy and I got a chance to relax. But then it was time to go inside again, and Khalid has a hard time with transitions, so he sprinted down the hall out of protest and I had to chase him.
When I finally caught him, we bumped into one of the staff members from the center that is managing his case, and to be honest, it was a breath of fresh air. That lady, like other therapists and case managers, looked at Khalid like a miracle, a prodigy, a best-case scenario and the child that every mother is jealous of. In the world of autism, this may be true- Khalid is making amazing progress, has manageable behavioural issues, and little to no aggression. The director of the autism center calls him a star and a poster boy for ABA, but here in the world of normal kids, Khalid is a disruption, an anomaly, a little boy who can’t follow simple instructions and screams at adults if they press him for social interaction. The teachers don’t beam at him and hug him and tickle him and engage with him, they sigh and keep a few feet back.
This morning Khalid had a cough, so I texted the school counselor to let her know we would stay home. She texted back saying let him stay home for the rest of week, and she would see him after the weekend. I know she meant well. I know there’s no law saying they have to take Khalid. I know their teachers don’t get paid extra for having a unpredictable, neurologically challenged little boy in the midst of their crying, peeing, nose-picking kindergarteners. They have enough to handle without throwing Khalid into the mix. But they could, at least, smile. Just a little. And watch with patient kindness instead of stern observation, clipboards in hand. And say things like ‘Don’t worry if he makes a little noise, the normal kids make quite a fuss too…’ instead of ‘If you even think he’s going to make noise…’
Even Joy, who’s been doing school shadowing and ABA therapy for ten years, was put off by the attitude. Or lack of warmth, rather. There’s willingness, but not much warmth. And I feel like saying ‘take your stupid school, Khalid doesn’t need it!’ but the truth is, he does. And there are only a handful of schools in the entire country that are willing to consider letting him in, and I should be grateful that there’s one so close to our house and already working with his therapy center to help facilitate inclusion. And plus, when the kids were supposed to be putting their heads down for some quiet time, and Khalid was doing some worksheets on his own to bide the time, one little boy raised his head, peeked over at Khalid’s work (Write the number twelve, then find which groups of pictures have twelve items in them, and circle them) and exclaimed, “How did you do that!?” And Joy and I beamed with pride, but then it was time for the kids to go to their Arabic class and it was time for us to go home. Because the management believes that Khalid would not be prepared to learn one Arabic letter and one color in Arabic per week, even though I told them he already knows the alphabet in Arabic.
(And he can count to one hundred)
(And he knows his shapes and colors)
(And he can add numbers from 1 to 10)
(And he can read using phonics)
(And he is computer literate, knows how to type, operate a DVD player, use Google Chrome, YouTube, Starfall.com, and PBSkids.org)
It took me some time to accept Khalid’s autism, so I should cut other people slack too. I know. I need to remind myself that they don’t know where he’s been to appreciate how far he’s come. And there’s nothing amazing about a him defending himself from interacting with the teachers or not yet speaking in full sentences. And yelling at anyone who raises their voice in his vicinity is rather disruptive to class. I’ll admit that too. But he’s my son- my amazing, unusual, awkward, shy, silly, academically brilliant but socially disabled son and I think he’s the most miraculous child in the world- and anyone who thinks poorly of him because of his disability is going to have a very hard time getting out of my bad books.
But I’m a grown up, so I can’t be defensive, I have to be the most outgoing, outspoken, cheerful, useful, special-needs shadow mom that KG has ever seen, and I have to support these two overworked young ladies and help teach them how to manage my ABA poster-boy.
(And if the thumb tacks should go missing and unexpectedly end up on someone’s chair, I’ll try to keep Khalid from reacting to the noise of their satisfyingly shrill surprise.)
By Momma, the end.