7 Things You Don’t Know About a Special Needs Parent

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About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.

Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don’t know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling from ear to ear).

Chances are that you know a special needs parent, or you may be one yourself. This is not intended to be an exhaustive list, but some of these are pretty universal:

  1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning her to sit a certain way, advocating for her in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my child while I am eating.
  2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a 1-year-old baby do what my child can’t at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my child struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for my child, “It’s not fair.” Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than my child, or who have certain disorders which are more mainstream and understood by the public, and seem to offer more support and resources than my child’s condition. It sounds petty, and it doesn’t diminish all my joy and pride in my child’s accomplishments. But often it’s very hard for me to be around typical kids with her. Which leads me to the next point…
  3. I feel alone. It’s lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it’s so not what my world looks like. Even within the special needs community, though, there is such variation in how every child is affected. Only I understand my child’s unique makeup and challenges. With this honor of caring for her comes the solitude of the role. I often feel really lonely in raising her.
  4. I am scared. I worry that I’m not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about her future, whether she will ever drive a car, or get married, or live independently. I am scared thinking of the hurts she will experience being “different” in what’s often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my child). I am scared about finances. Finally, I fear what will happen to my child if anything were to happen to me.
  5. I wish you would stop saying, “retarded,” “short bus,” “as long as it’s healthy… “ I know people usually don’t mean to be rude by these comments, and I probably made them myself before. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It’s disrespectful and hurtful to those who love and raise the kids you’re mocking (not to mention the kids themselves). As for the last comment, “as long as it’s healthy,” I hear a lot of pregnant women say this. Don’t get me wrong, I understand and share their wishes for healthy babies in every birth, but it’s become such a thoughtless mantra during pregnancy that it can feel like a wish against what my child is. “And what if it’s not healthy?” I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
  6. I am human. I have been challenged and pushed beyond my limits in raising my child. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without her. But I’m just like the next mom in some ways. Sometimes I get cranky, my child irritates me, and sometimes I just want to flee to the spa or go shopping. I still have dreams and aspirations of my own. Sometimes it’s nice to escape and talk about other things. And if it seems that the rest of my life is all I talk about sometimes, it’s because it can be hard to talk about my child. Which leads me to the final point…
  7. I want to talk about my child/It’s hard to talk about my child. My child is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute she is, or how she accomplished something in school. Sometimes, when I’m having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don’t often share with others, even close friends and family, the depths of what I go through when it comes to my child. But it doesn’t mean that I don’t want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my child, like “How did she like the zoo?” rather than a more generalized “How is she?” which can make me feel so overwhelmed that I usually just respond, “Good.” Starting with the small things gives me a chance to start sharing. And if I’m not sharing, don’t think that there isn’t a lot going on underneath, or that I don’t want to.

Raising a special needs child has changed my life. Nothing breaks the lens of performance and perfection more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary “performance” difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is — no matter how they stack up against what “should be.” Raising a special needs child shatters all the “should bes” that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don’t know about a special needs parent… I may have it tough, but in many ways I feel really blessed.

 

*With special thanks to Mariana Lin