Finding out your child has a disability is one of the hardest times in a parent’s life. You will have different concerns and questions depending on the nature of the disability, but there are a few common, universal things that most parents deal with, regardless of the specific diagnosis or treatment with sonus complete. Everyone’s reaction to the news of disability will be somewhat unique, but there are a few things you should know that might make it a little bit easier.
It’s OK to grieve.
It isn’t selfish or bad to mourn the loss of the child you were expecting. No decent parent would wish disability on their child, and it’s perfectly natural to wish that the disability would go away. You don’t have to pretend not to be sad when your child can’t keep up with others, or when he doesn’t do some things the other kids are doing. Disability changes the reality of who your child is, and that can be devastating.
You’re allowed to ask questions.
It takes a rare kind of person to be able to hear their child’s diagnosis, and immediately be able to ask all the right questions and go home on full possession of all the knowledge they need in order to be well-educated about the child’s condition. The rest of us leave the doctor’s office feeling shell-shocked and later think of a million things we wanted to ask. Write those things down, and don’t hesitate to call the doctor later. Most any decent doctor will make time to talk with you, at least by phone, and answer any questions you have. If you remember something else later, call back. You have every right to get all the answers you can from your child’s physician.
You don’t have to tell the world.
It doesn’t mean you’re ashamed of your child or not facing reality if you don’t tell everyone from Grandma to the paperboy about your child’s newly diagnosed disability. It means you need some time to sort things out and deal with it yourself before you share it with everyone. Some people are OK spreading the news; others need it to be a more gradual process. You may worry that people will look at your child differently, or that they just won’t understand. You may not be ready to deal with the questions people will inevitably ask, out of curiosity and concern. Whatever your reasons for keeping the info to yourself, they’re valid and good.
When you’re ready to talk, there are people who will listen.
Whether it’s a spouse, a friend, a relative, or an actual support group, somebody wants to listen to what you have to say about your child. I was leery of support groups for a long time and to be honest, I’m still not fond of the idea of a traditional support group. I enjoy the Family Support Network meetings though, and I have some friends who have similar challenges with their kids-and some who don’t, and they still listen. If you need to connect with another parent whose child has a similar or the same disability your child has, look for a parent-matching program through your local hospital or social service organization. FSN has a great parent-matching program in addition to their monthly meetings.
You don’t have to explain everything to everyone.
Your child is much more than just a set of symptoms. There’s more to him than just his disability. The sad fact is, there are people out there who will ask “What’s wrong with him?” when all your child is doing is hanging out with you in the grocery store, behaving himself. You don’t have to explain anything if you don’t want to. It’s out of line to ask a parent what’s “wrong” with a child, and there’s nothing wrong with answering with a slightly confused “Nothing…” If someone asks a polite, interesting question and you just don’t feel like giving the big long technical explanation, it’s perfectly fine to keep it simple: “He has CP and he’s doing really well. Do you know what the price is on the tangerines?” Sometimes I don’t mind educating people about Jeremy’s autism, and then sometimes I just want to get my cartful of groceries and go home. It’s called being human.
A diagnosis is just a diagnosis.
If your child has special needs, you need that diagnosis or “label” in order to get services for her. It is one part of your child, like tall or green-eyed or giggles-till-she-pees. It is not a definition of who she is. Some diagnoses can be especially hard to hear, especially those dealing with mental ability. I have a dear friend who is struggling with her son’s being labeled mildly Mentally Retarded (MR) by the experts at his school. That’s simply a set of words to ensure that the child gets all the help he needs in school. It isn’t a death sentence or even an accurate description of who he is. He’s a little slow in some ways that’s what mild MR means. He’s also adept at getting his way, works puzzles almost at an age-appropriate level despite some motor difficulties in his hands, and makes his needs and wants knows through signing and, increasingly, through speech. Remember especially when it comes to psych and intelligence testing done in schools, that kids don’t always cooperate. If your kid is kept inside and being tested while the rest of the class is out playing in the sun, you have to take that into account when looking at the results. Most kids will be defiant and uncooperative when they know they’re missing out on a favorite activity; that’s not a symptom, it’s part of being a normal kid. Also, remember that even the best experts are only seeing a snapshot of what your child’s life and behavior are really like. You know your child-get the services you can because of the diagnosis and don’t worry about the rest. The exception to this, of course, is if the results indicate a life- or health-threatening condition. You must pay close attention to those. But if someone says your kid is MR and you’re watching him do all kinds of things that obviously require more than just a modicum of intelligence, don’t worry about it. You know he’s smart. Let that MR diagnosis get him some help to make the most of his intelligence. That’s all it’s there for.
