Becoming A Special Needs Parent

It took me 2 years to say the words, “I have a kid with special needs.*”

2 years with surgeries, and consults, and waiting, and filling out every developmental checklist people would send me. 2 years filled with OT, PT, speech therapy; with in-home therapy, with IEP meetings, with requests for re-evaluation, with special needs transportation to school.

Avoiding the ‘Special Needs’ Label

You’d think with all that staring me in the face on a daily basis, it would be hard to dance around the phrase, “special needs.” And you’d be right.

I did consider it frequently. (What can I say? Denial is powerful.) But in the back of my mind, I kept thinking about other kids I would see at the therapy office. There were kids who were non-verbal, or were using walkers; kids with more significant challenges than my son. Surely, no one would argue that they had special needs. But I was always left searching myself for the answer to the question, “Does my son belong in the same category?” He doesn’t have the most severe ‘issues’ you’ve ever seen. But he’s also not typical.

Somehow, in my mind, giving him the distinction of special needs took away from the kids with more severe disabilities than his. I had a taste of the extra challenges he faced because of his differences, and understood that bigger differences meant bigger challenges. And I felt like labeling him ‘special needs’ would minimize the work and effort of kids (and their parents!) with more significant disabilities.

Living In A Gray Area of Special Needs

Because my son doesn’t look different, it felt like we were living in the shadow world of disabilities. It was like we didn’t fit in anywhere. There were times when I felt embarrassed to be asking for services for him, because I assumed people thought I was just some hypochondriac parent. It’s not easy to advocate for your kid when you are your own biggest obstacle.

But I also experienced the challenges of trying to help him fit in with kids his age who were typically developing. I felt that I had to be extra vigilant during play groups. Things like story time at the library or swim lessons were hard to take him to, because they were categorized by age. Which meant they expected him to behave in a way he wasn’t capable of, yet. And finding someone I was willing to let watch him was incredibly stressful. Who could I find who would understand he wasn’t being bad? Who could I trust to handle his behavior and not judge me or my family?

If I had accepted the label ‘special needs’ earlier, I could’ve had access to different resources for him. I could’ve brought him to story times specifically for kids who were atypical, and felt free of judgement. I could’ve had the words to share my story with close family earlier, and experienced their amazing support.

Coming to Terms

Before I could get to the point where I could acknowledge that my son has disabilities, a number of things had to happen. First, we received a diagnosis of a long-term condition for him. The therapists were great, and gave me language to explain this new diagnosis to close family. But even though I cognitively understood this condition would be with him for the rest of his life, I found myself continuing to think that he could outgrow it. (Again, denial is powerful. And sneaky.)

Secondly, he got a pair of ‘super-hero boots.’ It became much more difficult to deny that he had special needs when I’m strapping up his ankle braces every day, and staring at the physical manifestation of his diagnosis. And reaching out to other moms of kids with ankle braces was the most efficient way to deal with the shoe ‘drama’ that comes with the territory.

Third, was my experience at his school’s field day. He was the most severely, (at least physically) delayed kid in his class. It was an acutely painful experience watching my kid struggle just to run and keep up with his peers. It forced me to come to terms with the fact that he wasn’t just ‘not quite typically developing,’ he really does have some special needs that deserve attention and treatment.

I Should’ve Known He Had Special Needs

Somehow, (in the irrational, mama-bear part of my brain) I felt by being a Family Therapist, I should’ve been able to see this happening. Possibly even to prevent this. I should be able to see the behaviors, and flawlessly implement a strategy that would help him calm down. That would fix him. If I were a good mom, I should be able to help him catch up to his typical peers.

But those ‘should’s’ are a lie. Don’t believe them for a minute.

They weighed me down for too long. They still like to sneak around, and knock on the door from time to time. I’m getting quicker at catching them, so they don’t do as much damage as they used to.

We’re still in a place where we’re looking for answers. I (lovingly) compare him to an onion, and I’m slowly getting used to the idea that we may always be peeling back layers. But it is so amazing every time he takes a step forward, and I get to know him a little better.

You’re not Alone

So why am I sharing my** story now? Because I don’t want you to have to spend years wondering if you’re doing too little, or too much. I want you to be an empowered advocate for your kid, because you know them better than anyone else on this Earth. I don’t want you to be lonely, and isolated, and feel like you have to do this alone. You do belong.

Does your life story include living in this gray area between special needs and typical? How has it impacted you? I would love to hear your story!

Notes:

*I have chosen this phrase because I like how broad it is. During the stage when we didn’t have a formal diagnosis, it still fit. In it’s definition, it includes kids with learning difficulties, physical disabilities, and emotional and behavioral difficulties which are significant enough to impact their learning at school. And if it’s significant enough to impact school, it’s absolutely impacting their home life, as well.

**I do want to respect that this is his (my son’s) life. But, being his mom is a defining role in my life. I’ve tried to keep focused on my experience, and not his. In the future, it will be his decision to decide if he wants to talk about how having special needs has (or has not) impacted his life. However, I know there are other moms out there going through the same thing. If that’s you, I sincerely hope that my experience can bring you comfort, and a quicker learning curve!

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About Alexandria

Alexandria is a Marriage and Family Therapist with 10 years experience, who is passionate about happy families. She is adamant that happy families start with parents who have the knowledge and tools they need, and who aren’t stressed out to the max. And she wants to help your family thrive!