5 Things No One Told Me About Being A Special Needs Parent.

*Editors Note- This is a guest post by Jessica Graham. She is a mother of three kids, all of whom have been adopted and two of whom have significant special needs. Her book Beautiful Paradox: Musings, Marvelings and Strategies of a Special Needs Parent is available on Amazon and is free September 15-16, 2016.

As foster and adoptive parents, many of us are also parenting children with major special needs. Many of us are constantly looking back, before we began this journey, wishing someone would’ve told us what to expect.

child cute little girl and mother holding hand together

Being a parent to a child with medical or developmental needs is as much like being a parent to a typically developing child as it is different. Parenting is hard no matter who your kid is – and no matter who you are. Also, no matter how much you prepare, experience will be your greatest teacher.  But often for those of us who became special needs parents through adoption or foster care, there is an underlying frustrating – why didn’t someone tell me how it really is!

While it’s hard to know the reasons that people don’t share, I think there are several potential reasons: the circumstances are personal and therefore people don’t think that they have shared application; like with childbirth, people prefer to focus on the end result, not the labor; and, last, but not least, because there’s an element of shame.

But sharing the hardships and struggles doesn’t diminish your love for your child or the beauty of how your family was formed. If anything, it highlights the tender mercies given along the way.

Here are five things I wish I had known before I became a special need parent:

  1. There are long stretches of boredom and tedium. As a parent of a child with “extras,” you will have many, many mountain-top experiences (along with corresponding valleys); but, there is also a lot of “busywork” – traveling to and from medical appointments, sitting in doctor’s waiting rooms, and phone calls to the insurance company. These are necessary – but less than stimulating – tasks.You will have to find a way to get used to all of the white noise. For me, listening to podcasts and audio books in the car on the way to and from appointments helps tremendously, as does sitting outside to make medical phone calls – there’s just something about the fresh air that makes that task less onerous.
  2. You will get tripped up by the small things. I can handle surgeries and marathon medical appointments like a pro. When my daughter’s power wheelchair acts up, I can push that 300-pound behemoth up the driveway with no problem. But some days, I get sideswiped by the littlest things.There are times when having to hunt for my son’s nighttime splint feels like the end of the world or when one added doctor appointment makes an entire week go downhill. When this happens, I know that I need to scale back and slow down. A rising tide may lift all boats, but if the boat isn’t properly anchored, it will run aground.
  3. Your ability to relate to other people, and they to you, changes. For a period of time, I worked a full-time job on a part-time basis. Essentially, I was only in the office 3 days a week. It was wonderful and I was so lucky to have gotten to do it. But many people told me how nice it was that I had days “off.” Sure, there were days that I didn’t go into the office and that was a luxury in every sense of the word – but there were no days off. The days that I wasn’t at work, I was taking kids to therapy, or the specialist, or wherever. It baffled me that people couldn’t comprehend the medical workload. But the reality is, I didn’t understand it either – until I lived it.But relating to others is a two-way street. Recently another mother commented about how nice it was that her kids are big enough that she didn’t need to constantly be in the pool with them. I don’t even know this woman and I got all snarky. “Yeah, nice for you,” I thought. You see, her kids are my kids’ ages, but we haven’t reached the mommy-on-the-side-of the-pool stage yet. But my circumstances in no way changed that woman’s reality, just as her circumstances don’t change mine – I’m a better person when I remember that.
  4. You will experience life in a whole new way. Not because a good fairy hands you rose-colored glasses but because you become a better observer of life. The simple (and often unwelcomed) truth is that struggle gives our lives added dimension. When things are easy, we barely notice the green grass and blue skies. But when we have to paddle upstream, suddenly we don’t just notice these things – we see them.A few years ago, prosthetic running blades were a big news story. People couldn’t stop talking about how amazing the technology was and about how light the blades were. As someone familiar with prosthetics, all I could think about was how many times the runner had likely fallen down – and gotten back up again. I marveled just like everyone else, but for entirely different reasons.
  5. The thing you fear the most will be the thing you expect the least. There are so many scary things about being a parent: the fact that we can’t spare our children pain, uncertain futures, and medical issues beyond of control. But over time, I realized the thing that I feared the most was: me. I had a child who needed more of me than some days I wanted to give, and I had to figure out how to help us both. It was a painful and profound process, and I’m grateful for who it has made me.

Question: Are you parenting a child with special needs? What have you learned from the journey? You can leave a comment by clicking here.

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  • My ability to relate to some “regular” parents surprises me. Even in my own family, I know have gotten different treatment. Sometimes it’s “you are SO AMAZING for what you have done.” And perhaps that is true, but it doesn’t make us particularly special. Also, needing help is real. Most schools don’t really understand the need of foster parents and traumatized kids. Systems of IEPs and 504s are time consuming and have made my husband and I feel at constant battle with the “blue wall” of the administration and the teachers. Emotional trauma is not an obvious “special need”… so my son’s memory deficiencies are treated like something he should just “get over”. It’s very frustrating.

    • We totally understand this frustration. Hang in there. 😉