As I always say, I’m a mom of three children first, and then I’m a Child Psychologist. I work with many children, adolescents, young adults (and their families) who have ADHD, anxiety and learning disabilities. I also am a class parent in my children’s school where there are children with these and other disabilities. I have worked as a School Psychologist within a public school setting and know what I recommended for children on my caseload. Over the years, I have heard from parents, with whom I work, that they feel like sometimes their child’s disability is misunderstood and underestimated.
A learning disability, sensory processing disorder, anxiety, ADHD (and many others) can’t be seen. The unique profile of a child is detected by the child’s team (parents, teachers, pediatricians, psychologists, etc.), but it isn’t a given, it changes, and it doesn’t come with a manual.
So, what does this mean for you, as the parent of a child with an invisible disability? You are going to be an advocate for your child until he/she learns to self-advocate. It means that you’ll need to educate your child’s teacher, paraprofessional, case manager, principal because your child’s strength and weaknesses are not always easy to see or remember.
Let me share a story of a time when I was volunteering for my daughter’s media class when she was in first grade (she’s in fourth grade now). This adorable little man (with ADHD) wanted to check out a “Curious George” book. His paraprofessional stood over him with a timer and barraged him with comments like, “Choose a book. You have 3 minutes to choose a book. Have you chosen a book yet?” The poor thing didn’t have a chance to process. I could see him escalating and it was happening at the hands of the very support who was supposed to help him make a choice.
I’m not going to lie, I was getting increasingly more and more angry. She knows his diagnosis and his profile (I would think) and yet she was throwing so many words at him and not giving him a chance to view his choices. The little boy became more and more upset. I was getting more and more upset, too. So I walked over to him and got down on the floor with him, looked him in the eye and said, “You’re having a hard time making a choice today?” He responded, “Yes.” I said, “What can I do to help you?” He responded, “I read all of the Curious George books already, so there are no more for me to choose from.” I asked, “Is there another book that you would like to read?” He said, “No.”
So in essence, he was stuck. Nobody asked him why he was having a hard time choosing a book. But there was that timer standing over his head and a time pressure that was making us both mad! The consequences were coming at him, behavioral chart in hand, and I didn’t see any possibilities for problem solving or flexibility.
This little man became more and more upset and started throwing the books off the shelf. I just couldn’t watch this anymore. I said to his support staff, “Please stop the timer and let’s talk through this with him. He’s stuck.” She responded, “You’re being too easy on him. He has to make a choice.” I couldn’t even respond to that. I looked at the little man and said, “How are we going to solve this problem?” He said, “Well, I could take out a book I’ve read before.” I responded with a “That’s a great idea. Why don’t you do that!”
There are many pieces to this story that made me realize that this little boy was being punished for his disability. He had paraprofessional support which suggests that he needs one on one assistance whether it be behaviorally, emotionally, socially or academically. Yet, it was clear there was a wrongful belief that his disability was behavioral and that his behaviors were intentional and manipulative.
Unfair or Inappropriate Supports
I’m not a neurologist (nor do I play one on TV!), but I know that there is a neurochemical imbalance with ADHD, anxiety, and there are structural differences in the brain with ADHD and learning disabilities. These deficits are no different than the diabetic whose pancreas doesn’t produce enough insulin. Yet, nobody would stand over a diabetic and state, “Just ask your pancreas to make insulin. Just do it! Do it quicker!”
Needless to say, taking away recess or not earning points to win a prize, are unfair consequences for a child who struggles to achieve a series of target behaviors that may be unrealistic. Or for expecting that behavior to just happen because it’s month three of the school year. It’s a disability. Just as you would provide a ramp for a person in a wheel chair, the accommodations needed for a child with a learning disability, ADHD or anxiety are going to be needed each day. They will likely change, but a behavior plan with positive supports, praise, reinforcement, and choices are better than a timer and checking (or not) the box for behaviors that may not be relevant.
So, in essence. Don’t punish the disability. Accommodate and find the strengths in it to help the child compensate for what’s difficult for him/her. If you feel that your child’s disability is being misunderstood, schedule a time to meet with your child’s teacher and offer suggestions for times that are difficult during the school day. For example, let him take a break in between subjects. Give her a job each day to boost her self-esteem. Let him stand while working on math. What child wants to go to school and struggle all day? No child. No person as a child or adult wants a day filled with struggles and little positive feedback. Let’s work together with our children and their schools to help them have more positive experiences.