Hearing that your child has a problem is never, ever easy.

All of us are upset and scared and most of us ask the same questions: Do we know for sure what’s going on? Will it get better or worse? What can we do about it? If you’re reading this, you’ve started getting informed and connecting to other parents.

FIRST REACTIONS

YOU FEEL AFRAID

We all care about different things, but everyone loves their children. So when you find out something is not right with a child, it can be hard to stay calm and collected. But parents find a way to do what they have to, and you will too.

YOU WANT TO KNOW
WHY

There may be good reasons to want this question answered. If you are planning on having another child, for example, it can be an important question. Even if there isn’t a clear answer, its often one of the first questions parents ask and think about.

YOU WORRY ABOUT
THE FUTURE

We can never know how our kid’s lives will turn out, but it’s impossible not to think ahead. When it comes to kids with special needs, you can get upset about things that may never happen. Try to take it one step at a time and don’t get too far ahead of yourselves.

YOU WONDER HOW
OTHERS WILL REACT

The parent who claims not to care what others think about their child is either kidding themselves or everyone else. When you learn that your child has challenges, of course you think about everyone from grandparents to neighbors. It’s not your biggest concern, just one of the things you’ll worry about first.

FIRST QUESTIONS

Even if you don’t know exactly what is going on, it is good to have some idea of what happens next. Are there tests needed? Is there a specialist or expert who can help? Are there therapies or daily activities you can start right away to help encourage your child’s development? Is there anything you can start doing right away to encourage your child’s development?

No Mom or Dad looks for reasons to worry about their child, but if there are risks you need to know about them. A doctor may ask you to pay special attention to some behaviors or changes that will help you better understand the issues. Sometimes keeping a diary can be helpful.

The first question to ask, even if the answer is ‘nothing’ or ‘not yet’. When a baby or child is not developing as they should, you may need to be more thoughtful about basics like feeding and sleeping. Sometimes there are small changes you’ll learn about, things that can give a little extra help where it’s needed.

FIRST STEPS

If your kid has been diagnosed with something minor and easily managed, you don’t need to be reading this. And if you’re dealing with a real medical emergency you don’t have time right now. For everyone in between, the first thing you may need to do is nothing more than sit back and take a breath.

Learning that your baby or young child has challenges is upsetting to any parent. Just stopping to take a breath and a moment for yourself is a fine idea. It is not the end of the world, but it can be a scary moment, for many reasons.

There is no such thing as a perfectly normal child.  But it is also true that learning your child may have challenges more serious than most is never easy.

When you realize that your kid may not have the life you imagined, it can feel like a real loss. It’s never a great idea to spend a lot of time focusing on the negative. But every parent needs to let go of their idea of a perfectly happy kid in their own way. Give yourself time to get used to it. And look forward to being amused by other parents who haven’t been able to give up their ideas about the perfect kid – the ones yelling too loud on the sidelines of the sports field, or getting angry their child was given a grade they don’t like. At times it’s very hard to get clear answers to questions like ‘Is she going to grow out of this?’ or ‘Why can’t he tell us what’s bothering him?’. Trying to get clear, simple answers about your child can be very frustrating for any parent. What we all want to know is if our children will grow up to be happy and successful, and that’s a bigger worry when there are challenges. But there are more useful questions: What can we do to help our child thrive? How soon can we start therapies that can make a difference? What can we do to make sure she gets enough sleep and exercise? What every day activities will be helpful? How can we help her to be more active and engaged?

You will have your own questions, and often other parents are really helpful. Just try to focus on supporting your child and you’ll find that many questions do have answers, and helpful ones too. Look for questions, not answers Don’t listen to what ‘they’ say.  Many people have suggestions about how other people should care for their children. They usually mean to be helpful and sometimes are. But when a baby or young child has challenges things get a little more complicated. People may tell you how sorry they are about your difficulties, or say how much they admire you for being so brave. This is probably not what you need or want to hear. People also offer you advice about miracle cures, ideas about what causes problems and strange sounding treatments your doctor won’t tell you about. There is probably a good reason your doctor won’t tell you about that treatment, and if it sounds strange to you it’s because it probably is.

When something is not right with a child parents don’t just feel concerned: we want it fixed right away.

With something like an ear infection or a rash, a nurse or doctor can help, and the usual approach is sometimes called ‘name, blame and tame’. That means figuring out what the problem is, finding out what is causing it, and taking care of it. But things are not always as simple as 1,2,3. If your child is not developing, for example, it may be called Pervasive Development Delay (PDD) or Autism Spectrum. These are not really helpful names, the cause usually isn’t obvious, and a cure is usually not clear.

Patience is important for you and your family. And remember, worrying about your kid’s future is part of being a parent. You just have different and sometimes more scary things to worry about.

               

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