Most parents, upon learning their child has a disability, become experts on it. They read books, research websites, consult doctors, and do everything they can think of to learn as much as possible about their child’s condition. They become advocates for their child, approaching teachers, bus drivers, daycare providers, doctors, and anyone else that comes in contact with their child to inform them of the child’s disability and educate them when necessary. Some parents are more comfortable with this than others.
Eventually, there comes a point where the child has to be able to tell others about her own disability. There are many reasons behind this: to be able to educate classmates that are uninformed, to explain to a teacher why they struggle to read or learn, to be able to explain to others why they can’t participate in a certain activity, or to inform medical personnel in an emergency when Mom or Dad may not be present. Your child’s ability to be able to explain their disability to others depends on you being comfortable explaining it.
Parents of a child with an obvious disability may be more comfortable discussing it than the parents of a child with a less obvious disability – those parents often find they don’t want to draw attention to it. The disability is a part of your child, however, and it will not go away simply because no one talks about it. In truth, the mere fact of having your child’s disability be the “elephant in the room” will make your child feel worse.
The first step to helping your child learn how to talk about their disability with others is for you to talk about it with others. While you may have grown comfortable with approaching teachers to inform them of your child’s disability, you might still be hesitant to tell your friends and family. There are many support groups in Ocala and Marion County that center on specific special needs or special needs in general, and the acceptance you will find in these groups will help you to become more at ease discussing the disability. They also offer a sense of anonymity (at least initially) that may help you develop the ease and confidence needed to begin discussing the disability with the people close to you.
Once you become comfortable discussing it, the next step is making sure that your child understands that their disability is an aspect of their life, not who they are. For example, teaching your child not to say “I’m ADHD” but instead “I have ADHD”. Just as some people have blue eyes and some have brown, or some kids are tall and some short, and these things do not make them who they are, your child should understand that their disability is simply something that they have, but that it does not make them who they are. You might also consider having your child attend a support group, depending on their age. The same acceptance that helped you will likely also help your child.
You also need to ensure your child understands the limitations of their disability – and the freedoms. All too often, the focus is on the restrictions, and the freedoms aren’t so readily discussed. They might be assumed, but never specifically brought into the open. Your child needs to understand what she can and can’t do, so that when she explains to her classmates, she can say, “I can’t run the track because my asthma will flare up, but I can jump rope with you!” It’s also helpful in a situation where someone else might be discussing her restrictions (a classmate saying “Let’s not play with her; she can’t run the track”, for example), because then your child can jump in with a list of those things she can do. It’ll give her a sense of confidence that might sometimes be a bit deflated when faced with those things she can’t do.
If your child’s disability involves potential safety issues, it’s important to make sure he understands those issues. He needs to know what allergies he has, how they will affect him, and what needs to be done in the event he comes into contact with one; he needs to be aware of the medications he takes, his blood type, and other medical information that those treating him in a medical emergency would need to know; and he needs to understand his disability. He needs to know what it is, and what the progression will be if it is one that progresses.
Naturally, some of these things require that your child be a bit older in order to understand them and explain them. You know your child best, and you should begin discussing the various topics with them when you feel they are ready. If you’re not sure, talk to your child’s physician, or a therapist, and ask for guidance from them to determine when your child is ready and how best to begin discussing these things.
If your child is too shy or otherwise struggles to talk with others, and you’re concerned that they won’t be able to adequately discuss their disability, you can also enlist the assistance of their teacher, or perhaps a close friend of your child’s that is better at speaking about these kinds of things. You can also negotiate with the school to have a clause put into the IEP that allows you or the teacher to have a discussion with the class to explain your child’s disability to the class and to others who need to understand.