He’s a regular parlor-room magician. But instead of pulling a never-ending trail of colorful handkerchiefs or a bouquet of flowers from his sleeves, we are retrieving remote controls, spoons, wads of tissues, beads, toy cars, small stuffed animals and hairbrushes.
Yesterday, when I announced bed time to him, he stood up sleepily and started to stagger upstairs. In true Lil D style of late, he was wearing two hoodies over an undershirt.
(He just finds them around the house and piles them on. Though I know it’s some sort of sensory issue –this wanting to be totally covered up in weighted clothing, especially over his head — I choose to think he is experimenting with a fully-covered-up-hijab-lifestyle in support of his dear old mother. If we dress him in anything without a hoodie, within 15 minutes he grabs his winter coat and puts it one, sometimes inside out, and pulls the hood over his head.
If he can’t find his coat, he’ll put his sister’s on. Once, I caught him cramming his 12-year-old-self into his five-year-old brother’s winter coat, just to get that hood over his head.)
I stopped Lil D before he could make it to the stairs and said, “Wait, let’s empty your sleeves.” Between the sleeves of the two hoodies, I retrieved two of Hamza’s cars, three spoons and two remote controls. Then, I dug deeper between his sleeve and arm and found a flashlight.
A whole flashlight.
I don’t know why he’s hoarding things up his sleeves – it’s his newest “thing,” a new OCD (obsessive-compulsive disorder) behavior that makes me wonder if he has some sort of infection. I spoke to his teacher, advising him to clean out his sleeves before he gets on the bus at the end of the day, and I’ve told his home therapists to keep an eye on items he may stuff up his sleeves when they are out doing their community-based instruction in local stores.
Because the last thing I need is for him to be accused of shoplifting.
Our therapists have their “community comment” cards at the ready for such a situation. These are cards we have prepared for them to hand out in the community in case things get out of hand due to some behavior or a meltdown. Because, like I’ve told every therapist who has worked with Lil D, your job is to care for him, teach him the programs we’ve discussed, protect him, treat him with respect, help him maintain as much appropriate behavior as possible when you are out and keep him safe. If anyone questions you, you give him this card and tell them to take it up with me – his mother.
In nine years of home-based therapy, I’ve not once gotten a call from someone in the community. I’ve got some great therapists working with Lil D, and they are pretty good at monitoring situations. A few times they have handed out the card. Often, it doesn’t come to that, as they are able to diffuse things before it gets out of hand. Also, we’ve developed relationships with area businesses and restaurants where we teach Lil D various life skills, like shopping, navigating a grocery cart, paying for items, socially greeting people, and not encroaching in people’s space.
How Do We Do It?
I recently visited an old, dear friend who just had her second baby. She worked with us for two years as Lil D’s therapist, going on countless of CBIs with him. She told me about a time when they were at our local Children’s Museum, which can be a great place for learning and socializing opportunities as well as working on appropriate behavior. But, it’s a hard place for Lil D because of all the kids running around – sensory overload.
While playing at the museum, one child got too close, and Lil D bit him. Totally inappropriate. I can only imagine the ire of the father. My friend told me that he got up in Lil D’s face and was yelling at him. She apologized on his behalf and explained the situation and Lil D’s autism. Said they would leave the area. She told him he could call me to talk about it more. But the father was just pissed and kept yelling at Lil D right in his face until our therapist guided Lil D to another area of the museum.
More than three years later, my friend still thinks about that day. How do you do it, she asked me. How do you handle situations like that? I told her on a case-by-case basis, because as much as we need to respect what Lil D can and cannot handle in the public and push him to learn how to behave in public settings (like no biting), I also expect the public to learn how to live with Lil D and children like him. To learn that there may be reasons for why children and adults are acting in a so-called peculiar manner, and to exercise some compassion, forgiveness and acceptance.
The number of children with autism spectrum disorder (ASD) is not getting any less. It’s only growing, and growing at an alarming rate. Perhaps you’ve heard the latest figures from the Center for Disease Control? Last week the CDC reported that based on a parental survey of children between the ages of 6-17, 1-50 children school-aged children have autism. Read it yourself here.
My son is one of them. He was 1-150 in 2002, 1-88 in 2012 and now 1-50 in 2013 – all according to the CDC. On the drive home from visiting my friend and her baby, I gave an interview to a health and wellness website on the latest statistics. The first thing asked of me was if the numbers are up because of better diagnosing. I know how journalism works, and you have to ask that question. But it makes me want to scream. Better diagnosing? What the hell does that mean? That doctors are diagnosing ASD in kids in whom they couldn’t recognize it before?
Ok, let’s say doctors are diagnosing it better. Shouldn’t that still ring like a million alarm bells? The simple fact is that the rate of kids having ASD keeps increasing exponentially. And, according to the same survey, 40 percent of school age kids with autism cannot speak.
Lil D is one of those kids.
What’s it going to take, I ask you. What has to happen for people to realize that this is an epidemic and treat it as such? When our children become teenagers and then adults, and they enter the workforce and many need support and accommodations? Or, when many more who cannot work end up dependent on insufficient government programming to support them when their aging parents cannot?
What are we doing to reverse these statistics? To figure out what in the environment, in our foods, in our medicines, in our treatments, in our bodies is causing children to develop autism spectrum disorder? And what is being done to prepare for the thousands upon thousands of children who will be aging out of the school system soon? What of the adults with autism? Where is the urgency? Why isn’t there a national program?
More often than not, our family’s day-to-day challenges with Lil D as well as planning for his (and our other children’s) future keeps us so busy that we don’t spend time to spend pondering the whys and what nows of this crisis. I think to myself, my child-bearing days (Allah knows best) are pretty much done: I have one child severely affected by ASD and two who are not. I just need to figure out how to help my kids live their lives with faith, safety, dignity and humanity.
But then I think about the future, when my children Insha’Allah will have children. What will the odds be like then?
Islam teaches me to have faith in Allah and in His will. That Allah is the best of planners. And, when I look at Lil D in those moments of acute clarity, moments when his eyes lock upon mine and his trust in me shakes me to my very core, I am sure of the existence of Allah. I know, no matter what we face in this life, despite all that makes no sense, Lil D’s place in paradise is written. A perfect, eternal life awaits him.
But what of this temporary life, where the number of children having ASD keep rising and rising and rising?
As you ponder that, I’m going to go empty Lil D’s sleeves and have a laugh. Because if I don’t laugh about it, I’ll cry.