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Special Needs Parents: Don’t Stop Looking!

Updated: Apr 6, 2023

We’ve all heard the adage, relative to finding our lost car keys or glasses: “It’s always in the last place you look!” Well, in the case of car keys or glasses, that’s because when we find them, we’re done. It’s “the last place we look” because we stop after that. My message today, for all parents, but especially parents of identified special-needs children, is “Don’t stop looking!”

Identifying your child’s needs, especially if they are at all out of the ordinary, is not usually a “one-and-done” process. Sometimes it can feel that way, though. We take our child to the expert, they say “Oh, we know all about (insert diagnosis here), and here’s what you do.” If you are extremely lucky, the “what you do” includes individual and group intervention for your child, education and support for you the parent and any siblings, access to scaffolding and accommodations and the like.

If you’re not so lucky, then begins a research frenzy, reaching out to other parents and experts with knowledge about your child’s diagnosis, finding scholarly articles, educating professionals about how to work with your child and all the rest. Both scenarios, however, carry the risk of prematurely accepting that the picture you have of your kid is complete. In the first case, because the diagnosis is well known — therefore there is a clear path and you just need to take it. The second scenario is risky because the burnout factor of having to create a full-on program for your child makes the idea of doing another round of the same work on a different topic disheartening and overwhelming.

There are a couple of other factors which can make us stop looking for other answers to what is going on for our child. One is that the very nature of child development creates a moving target. It can take a while for new or challenging behaviors, for example, to settle in to either a “this is a phase” or “this is could be a problem” category. Sometimes, too, we are running so fast to keep up with development that we don’t have bandwidth for asking deeper questions.

The other factor at play is systemic, rooted in the way we work with experts to help us understand our chilren. Most experts are wielders of hammers that can make many things look like nails – we all have our biases, and will tend to see things through our personal glasses. This is a big issue when your child is twice-exceptional (2e), and the expert is not well-versed in what 2e can look like. They may be an autism expert, or a reading expert, and be trained to deal with those specialties, and indeed may be really good at those specialties. They can, unfortunately, also miss or not understand the importance of integrating a full understanding of the child, including giftedness, into their approach to helping.

Why does this matter? Why can’t we just work on the reading, or the social skills group, or the sensory processing? Because if a child is 2e, and all we focus on is their areas of struggle, we run the risk of sending a message that they are somehow broken. One 3rd grade boy I know had un-diagnosed dysgraphia (difficulty managing paper and pencil). He was moved from a very advanced math group in class to the “lowest” group (and as usual, all the kids know which group is which). He wasn’t turning in work, and because no-one had looked at his writing as its own possible problem, an assumption was made that he was struggling with the concepts. This experience caused the boy to believe he was not smart globally, and bad at math in particular, throwing a new stumbling block into his path on top of the already existing ones.

As I discussed in my last post, being fully seen is key in supporting a child’s developing self-concept. Anxiety, depression and behavioral problems can take root when we are not working with all the pieces to the puzzle. In fact, if you feel your child is not thriving as they should, this can be an indicator that you haven’t yet gotten a full picture of their needs.

So then, you may ask, how do I know if I’ve gotten a full picture? Here are some clues that may point to other, un-attended-to issues:

  1. If you and your child are doing all the suggested things, and things aren’t better, or are worse

  2. If your child’s mood or behavior remain or become more negative. Watch especially for signs that they are putting out more effort to maintain their composure than would be expected, such as meltdowns after school on a regular basis, while at the same time “holding it together” during school.

  3. If your child all of a sudden has struggles in an area that wasn’t hard before

  4. If you suspect your child’s behavior problems may come from boredom

  5. If you see significant differences in your child’s mood or performance in different kinds of settings

Listen to your parently intuition. I frequently hear from parents that it was their gut sense that something was missing in the picture of their child’s needs which led them to seek more testing, or get a second opinion, or see what happens when they switched schools. Sometimes the hint is how relaxed their child gets over the summer when school is out, only to become a stress bucket when school starts. Maybe it is a sense that in spite of their difficulties with managing paper and pencil, they are actually bored with classes. Perhaps you notice that your child comes back from certain playdates or interactions with certain adults feeling calm (when they are frequently not) or excited about a topic (when they are frequently not). All of these can be clues in the unfolding mystery of understanding your child.

So now you may be thinking “What if I miss something?” or “More special needs? How could I possibly add to my already too-full plate? Ack!” Well, you probably are going to miss something for a while — and that’s ok. As one of my first clinical supervisors liked to say, if something is important, it will come back again and again, so don’t worry if you miss it at first. And if you are already juggling a pile of therapies and research and social support and all the other things that go along with 2e children, you don’t necessarily have to add to your list. The point is not that you must find and intervene, but that you should just keep looking. Your child will give you hints about what they need, if you just keep watching.

In summary, I think we are all affected by a culture that tends to oversimplify and sound-bite-ize the incredibly complex job of parenting a child, whether they are neurotypical or not. But there is nothing at all wrong in continuing to look for more pieces to the puzzle — this isn’t failure in parenting, it’s skillful parenting! It’s accepting your child and your parenting journey for what it is, and continuing to show up. May we all have the encouragement and support we need to keep doing that for our kids.

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