I am the mother of 2 children: Joseph is 20 years old and Johnathan is 18. Johnathan was diagnosed with autism at the age of 4 ½. At 10 months, Johnathan had been saying words and simple sentences and would repeat colors and shapes. But at 17 months he woke one day holding his ears and humming, continuously humming. I would call his name, but it was like he was looking through me. He lost his ability to speak and to be in a social setting. He developed an obsession with strings and straps and belts, and he would chew on straws. It was amazing the way he chewed on straws. He was actually making a pattern. Every little bite mark was perfect and spaced out perfectly.I did research and I realized even before he was diagnosed that he had developed autistic characteristics.
At the time what happened to Johnathan felt like the loss of a child; it was like a death. I had this beautiful full-term, 8-pound baby who was healthy and doing everything—if not on time, before time. And then, all of a sudden, where did he go? It was very scary.
Johnathan had Early Intervention, preschool special education, and an excellent school-age program, where their expertise in autism was 100%. He continued there until he fell sick at age 17.
What happened was that Johnathan had a sudden, dramatic weight loss.He would have mornings when he didn’t want to get up and would point to the bed and say, “No.” He was looking ill but the doctor said he was fine. He went from a size 40 waist all the way down to a 30. Every two weeks I was buying smaller size pants. He was eating well but he was disappearing. By the end of the whole thing, a year later, he had lost 75 pounds.
We consulted a neurologist, then went for gastroenterology, endoscopy, colonoscopy, immunology, endocrinology, ophthalmology, cardiology, even genetics. By the time we were done, we had gone through 13 medical entities. And in the end, it’s still a mystery. Now he’s regaining his weight and looks more like the Johnathan we know.
Then, about 6 months ago, out of nowhere, Johnathan started to have this behavior where he would stomp really loud. He had never done this before. It was very disturbing. His psychiatrist suggested that I get behavior management training. At this point I wanted all the help I could get because Johnathan is a big guy, and when he stomps the whole house shakes. I learned from the behavior management program that when this happens, I have to reassure him, try to figure out what’s wrong, and then walk away because the storm will pass. Thank goodness, I don’t have neighbors downstairs. But the people upstairs can hear him, and lately they have been banging on the floor, which only exacerbates Johnathan’s problems.
With the stomping have come other medical issues. He has visual disturbances where his eye turns out and he can’t see properly. He has headaches. And his breast is leaking a watery discharge, which makes him double over in pain. The sad part is that he is nonverbal so he can’t express what is wrong. His receptive skills are excellent but when it comes to verbalizing what he’s feeling, he cannot. And that is very difficult.
And these behaviors are very difficult because you don’t know when they are going to strike. His arms flare out, he kind of shakes, he’ll slide his chair across the room, he’ll fall, he’ll stomp, he’ll throw something. It’s scary. He is 5’11” and right now he weighs about 220.
I have discovered that Johnathan cannot control this behavior. When I started observing him more closely, I realized that it happens because something is happening to him physically that he can’t control. Johnathan is a very loving, nurturing individual. He’s very tender, he looks for affection, and loves to be helpful. But these episodes change him for that split moment. He looks right through you; he becomes somebody else for that split moment. Then, once the circuits are back, he looks at you as if to ask what just happened. He looks a little disoriented. He knows something happened but he doesn’t know exactly what. It’s very sad. His brother stays away; he stays in his room. What his brother doesn’t like is the stomping. He says, “Mom, I can’t take it. Mom, it’s too loud.” So far I haven’t felt that I was in danger during an episode, but I have become apprehensive of what could happen.
Our psychiatrist feels that Johnathan may have temporal lobe epilepsy where what is happening is actually a seizure. The pediatrician is also considering whether Johnathan might have tardive dyskinesia, a medication side effect that causes involuntary movements.
I worry all the time about what will happen when it gets to the point that I can’t handle Johnathan any more. I have learned there are not many residential services—very few vacancies and no new services for people who need 24-hour staffing. I have asked for help but no one knows what to do. Johnathan is nonverbal and has all these complex medical issues. Will there be a residence for him? I know him best and it’s taking all my energy to figure out what’s going on with him. Are residential staff going to be able to pay the kind of attention to him that he requires to manage his very specialized needs? I am very afraid.
I have no brothers or sisters. My grandparents are deceased, my father is deceased. I have my mother with me who had open-heart surgery. I’m the only support Johnathan has. A year ago I had cervical spine compression. What if I get really sick? What if I’m not here? I think about this all the time.
I want the legislators to know the importance of developing appropriate residential settings for people with complex medical and behavioral needs. You get the diagnosis, and before you know it, they’re adults and the challenges only get bigger. Every day is a challenge. I believe there aren’t enough services for people who are difficult to serve. Absolutely, this should be a priority. It’s dire at this point. I urge our legislators to make this their priority.
Thank you.