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Your Child Was Diagnosed With Special Needs: Now What?

Exploring the relationship between Neurodiversity and Child Development and Learning Theory. Personal experience included.


When My Child Was Diagnosed With Special Needs

I have a confession to make. I spend a fair amount of time on Facebook. I like watching cute cat videos and bad recipe mishaps, and I have joined a wide variety of communities and groups. Most of all I enjoy interacting with those people who, without Facebook, neither they nor I would know the other existed.

One of my favorite groups is a group for parents who have kids with special needs. Why? Well, sometimes, misery loves company. (I am joking, partially.) More than anything I like connecting with other parents who are on the same journey that I am. My son has a lot of special needs and, while no two journeys are identical, these parents fight a lot of the same battles I do. The comradery is priceless.

Having been a contributing member in some of these groups for quite a long time, I have noticed something: So many parents note how sad they are when their child is diagnosed. They feel lost, alone, scared, or even as if their child has been replaced by one they don’t understand.

I have a few things to say.

What to Do When Your Child Is Diagnosed

1. Let yourself grieve for a moment.

First: Grieve your loss. We all have those parental dreams. Walking our daughters down the aisle. Watching our kids graduate from high school and college. Seeing them become successful, productive, well-adjusted members of society. All of a sudden, these dreams vanish. We are now faced with the possibility that our kids may never do any of these things. Mourn the loss of what may have been.

2. Start to shift your focus.

In that grieving process, recognize that your child still has potential. That part hasn't changed. They may not reach the goals you imagined, but as they grow and develop and mature (and yes, they still will do all those things), they will reach new goals and have new dreams. The focus just shifts a little. There is always space for dreams.

3. Never, ever feel guilty for your feelings.

You are allowed to feel whatever comes up. This is not an easy road we travel. There is a plethora of information and opinions out there. It can be incredibly overwhelming. Maybe your journey to diagnosis was easy, or maybe it was long and arduous. Either way, an Official Diagnosis will bring up a thousand feelings, and each and every one of them is valid. Sit with them. Own them. Let them be a part of you. Then get up and do what you need to do.

4. Remember that your kid hasn’t changed just because they were given a diagnosis.

While a diagnosis may explain some of the more intriguing or frustrating behaviors, it doesn’t mean your child is suddenly a different human being. The challenges you faced the day before diagnosis are exactly the same ones you face the day after. All those wonderful and unusual qualities your child had the day before are all the same the day after. Some behaviors may make more sense the day after, but your child isn't a different person and you haven't been randomly dropped into this situation out of nowhere.

5. Do your research.

Do your research. Stigma is everywhere. Many of us grew up in generations where mental health and special needs were taboo subjects and an embarrassment to the family. Recently there has been a huge push in research and acceptance. While there are still miles to go, progress is being made every day. Find some good, reliable resources and absorb everything that is out there. Read the books. Listen to interviews. Read articles and other families' experiences (hint hint lol). Ask the doctors and service providers hard questions. The more you know, the better you can understand what your child is managing with and where they need help.

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6. Learn how to advocate for your child.

You are their only advocate. No one, literally No One will advocate for your child like you can. One thing I have learned from hanging out in these groups is that Special Needs parents are a fierce bunch. Once we have the information we need, we tend to run with it. Do not depend on anyone else to do that for your child. You will both lose out.

7. Get all the help you can!

One thing I say time and again is this: There is no shame to my game. The more help and support my kid gets, the better his life will be. If there is a service your kid qualifies for, go get it. Fight for it. Each provider brings something new and different to your child and can give you tools to help your child.

8. Find your tribe.

Nobody can survive this journey on their own. Not only do you not have adequate training but you do not have the reserves—mentally or emotionally—to be able to handle this completely alone. There is a reason why service providers are referred to as “treatment teams.” There are lots of other families “out there” going through the same things you are. Connect with them. Offer strength and support to each other. You never know when your own experiences may give someone else some wisdom or comfort.

9. Know your child’s rights. . . and yours.

Sometimes, when we are absolutely exhausted from all the day-in and day-out, we forget what our children—or we—are entitled to. It is incredibly helpful to have an advocate when dealing with schools. It is helpful to have legal support when fighting for community services. Familiarize yourself with how the laws protect you and your child.

10. Siblings need support, too.

When one or two kids demand a significant amount of the parent's attention, it is easy for other siblings to get pushed to the back burner. There is nothing wrong with you as a parent that this happens but it does need to be addressed as soon as you notice it happening.

When my kids were younger, my daughter was the more “behaved” kid. She did well in school and made friends really easily. My son took up a significant portion of my time, attention, and energy. When we realized what was happening, we instituted “special time.” Every so often, we would schedule an activity that was solely for her, without her brother. As she got older we did this less, but she and I would frequently go on walks together so she got some time just to herself. Try to set aside some specific (and consistent if possible) time in your schedule.

11. Finally, forget "normal."

Other than as a setting on your dryer, "normal" is a useless word. Frankly, it really has no place being applied to human beings. We are all so unique and individual. They are beautiful, smart, funny, hungry, tired, and magical, fearfully and wonderfully made, just like everyone else. Your child is no exception.

One thought that has saved my bacon a few more times than I am willing to admit is this: Just because someone else’s kid looks (or acts) “normal” in public (or when I visit) doesn’t mean they are like that all the time. I promise you, they have wild days too. Granted, we rock the boat a little harder, but I assure you they have storms too.

Enjoy the Journey

Most importantly, remember this is your journey with your child. It is much like many other families. It is also unique to you and your family. There are extraordinary resources and supports available to you. Go find them!

This content reflects the personal opinions of the author. It is accurate and true to the best of the author’s knowledge and should not be substituted for impartial fact or advice in legal, political, or personal matters.

© 2022 Elizabeth Stonick

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