The Dark Side Of Special

Despite the prevalence of Chicken Soup stories and television specials, parenting a child with special needs is not a particularly rosy experience. Read on for a look at what most of these parents would never tell you.

Girl with Special NeedsOne of the things you learn when you have a child with special needs is that having a child with special needs is not an after school special, a Lifetime movie, or a very special episode of an otherwise humorous show. It's a whole-life commitment, and generally no one really asks you if you're interested before you sign up.

Some people romanticize the notion of having a Child with Special Needs. You can hear the capital letters when they talk. They cock their heads to the side and ask you how you're feeling, how you're doing, how you're holding up all the time. They mean well. They think they're being kind. And they probably have no idea why you've stopped returning their calls.

When you actually have a kid with special needs, you figure out pretty darn quickly that some parts of your job are really awful.

This wasn't in the job description.

No one enjoys calling insurance companies daily and fighting for services that should be covered, services that were supposed to be covered, services that need to be covered, services that could help.

No one thinks it's fun to race to school for early pickup, tear across town for therapy, duck out to pick up the siblings, schlep the siblings back to pick up the kid in therapy, and drive home while everyone whines that they're hungry, they're late to baseball, you missed school play, they hate the car.

No one dreams of one day parenting a child who needs you to feed him, diaper him, speak for him, advocate for him, play with him, soothe him, cry for him -- at age twelve.

But you get so much back.

The starry-eyed Pollyannas gush that your child is so lucky to have you, that God never gives you more than you can handle, that you've become a better person, a better parent, you've gained so much from having this child. And some of that may be true, depending on how much you've had to drink that day and whether the housekeeper showed up to clean and the aide showed up so you could get a nap, and of course you love your kid, but there's this huge cloud that just rains on you all. the. time.

It's the cloud that says, Sure, you got to write a book about parenting and meet amazing people and know that love is truly limitless in a way that few people ever even dream of. But what did your kid get? A crappy disability. A disease you hate. A syndrome you've begged God to give you instead. A body that betrays him, a mind that works in ways too mysterious for mere humans to understand.

It's the darkness that you can just barely keep at bay with big sunglasses and a steady diet of Zoloft and red wine. It's the incomprehensible rage you sometimes feel when you see happy, healthy children running around enjoying life. It's the grief that threatens to swallow you whole when your younger child surpasses the older one developmentally.

It is a far, far better thing that I do than you have ever done.

The primary upside on the darkest days is the feeling of moral superiority you can enjoy as you look around the grocery store or the park. You know that you work harder than all of these mothers. You know that they know nothing of what real parenting entails.

Except that one there. The one whose 12-year-old son is wearing a helmet that's clearly not a bike helmet. It's a helmet to keep him from crushing his skull when he bangs his head on the floor repeatedly. That mom knows.

And she could be a friend.

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Comments

Comments on "The truth about parenting a child with special needs"

Maureen October 21, 2012 | 7:07 PM

I salute your honesty, but as mother to a child with Down syndrome, I take exception to the generality that so much of it "sucks." Everyone in life has "stuff" and generally stuff that "sucks." But focusing on what sucks feeds into more sucking, and it's a vicious cycle. ALL parenthood is hard. But the last thing I ever want another parent to think is that I feel superior to them because it may appear I have more "stuff." The truth is that none of us knows what goes on in someone else's home, whether it's physical or verbal abuse, alcoholism or just plain neglect and in difference. If you think your parenting is superior to another's, you are being short-sighted and closed-minded. And isn't that what we beg others NOT to exhibit around our children? I respect our differences of opinion but I felt strongly that this perspective needed to be shared. Parenting a child with special needs is challenging. But it doesn't suck. It's an ongoing lesson in humility, patience and unconditional love. That could never suck.

Kelly September 04, 2012 | 11:40 AM

The truth is, people who don't have a special needs child will never get it. They just won't. And hell, I'll admit, if I'd never had my daughter, I wouldn't want to "get it" either. I was telling my husband this the other day- it's not inspirational, it doesn't make us better people, it's not a gift- it just plain sucks. And yes, there are times it is rewarding because the child works so hard to finally be able to do something. But most of the time, it sucks. It sucks for my daughter to not be able to enjoy food instead of having it pumped into her stomach and having to go through multiple surgeries, it sucks for my son for not getting enough of mommy's attention or dealing with mommy being so frustrated all the time. It sucks that my life is consumed by trying, just trying, to figure out what to do for my daughter. All the while people saying, "Oh, you're a great mom. You're doing great. Such an inspiration." AHHHHHHH! Do you really want to help someone with a special needs child? Then do just that. HELP THEM. Learn how to use the feeding tube, help with physical therapy, entertain the other kids, show up and do some house cleaning for them, let them take a nap. Actions speak louder than words. After words, everyone just goes back to real life.

Tammy June 03, 2012 | 10:11 AM

Thank you for this. A bit harsh but honest. I sometimes feel like I am just crazy..... We wear many hats having a child with special needs. People can be ignorant and rude to my sweet little boy. I have fought the urge to slap a few! LOL I think laughter and my son's sweet crooked smile gets me through everyday. I am BLESSED! Some days are harder than others but God does not give us more than we can handle. Do NOT JUDGE anyone unless you have walked in their shoes. If you have walked in their shoes, be kind and help resole those shoes on those hard days when they (The parents) are worn down!!!!! :-)

Kelly April 24, 2012 | 7:43 AM

Very well written article! I have a special needs child and a "typical" child and I can relate to your experiences. I apologize for those who have judged you in the comments above. No one knows what someone else's day is like until you've truly been in their shoes. We all experience joy and we all experience grief and everything in between-it's part of being human. I think it's hard for others to understand that even on a great day, we are still weighed down with worry. I can not imagine life without my 2 amazing children but it is often REALLY hard and I appreciate your honesty. Take care & good luck!

Cynthia February 17, 2012 | 10:21 PM

This article really touched me. Especially, i feel it relates to what i am going through. Believe it or not my family thinks i've got it easy (a three year old who can not walk or talk or feed herself. They say I dont have to run after her.They say she can not wear me out that much) Every day is a struggle for me. The frustrations or carrying a 15KG toddler around and spending most of my time guessing why she is so frustrated.

Kristi January 11, 2012 | 10:20 PM

I am do not have a child with special needs. I am barely a parent even. I just have one 19 month old daughter. I came across this article because I have friends who posted it on facebook. I wanted to take the time to read. I wanted to let them know, "Hey. I see you. I hear you. I noticed this article that you posted. I don't understand what you go through at all, but I want to take the time to read about this because you are my friend and you relate to this." Then I read this part, "The primary upside on the darkest days is the feeling of moral superiority you can enjoy as you look around the grocery store or the park. You know that you work harder than all of these mothers. You know that they know nothing of what real parenting entails." It made me sad. I am trying not to take this personally. Maybe it's just an example of some of those thoughts that we have that we shouldn't think that creep up in our heads. Maybe it's just a way of saying, "Man, they have no clue. They just have no clue. They really just don't get what I go through." No one disputes that mothers of children with special needs work harder for their children and have to do more. Perhaps I am just another one of those stupid people who will never get it, but I don't know about you, but it would make me feel a bit uncomfortable and intimidated trying to be friends with someone who I knew was looking down on me. Especially if I'd really like to be friends. I'd really like to understand.

Dara January 11, 2012 | 5:47 PM

Excellent article. To those who aren't special needs parents, I would like to comment: A parent without special needs kids (and I don't mean dyslexia or ADHD, I mean my-kid-will-never-be-independent special needs) can't understand what we go through. And I know that if I had typical children, I would not understand either. The best non-special-needs mom friends that I have are the ones who are willing to spend a day with us and don't get scared off. Those people are rare. And I don't know that I could be that kind of friend without the child I have. So I don't blame those of you with textbook lives, but sometimes, SOMETIMES, I do feel a little bitter. I've been saddled with quite a load, so please let me have my moments.

yvette January 09, 2012 | 7:21 PM

WOW!!! Well stated...made me cry!

Theresa January 09, 2012 | 6:51 PM

Thank you for writing honest articles! It is nice to read an article that says exactly what I am feeling, instead of another article that says how lucky I am to have such a "special" child. I do feel lucky to have such a beautiful, sweet son; but 90% of the time my heart hurts because I can not help him with his disabilities!! -mother of 12 year old with autism and MR

Debra Nordt January 09, 2012 | 6:39 PM

I try to treat parents with special needs children no diffrent than any other.I have never thought I had a problem with this untile I read your artical. Tell me what you expect. I am well meaning in what I say here. I just do not know what I should do.

Brandi January 09, 2012 | 9:48 AM

Thank you! I got teary eyed reading this because it was like you were in my head writing my thoughts. Thank you again.

kerstin January 06, 2012 | 3:28 PM

Thank you for publishing this.

joysexy42 February 12, 2011 | 7:38 AM

i love my seif for whom i am

Kim September 16, 2010 | 9:38 PM

Beautifully, eloquently written. You really stuck a chord in me with this paragraph... "It's the darkness that you can just barely keep at bay with big sunglasses and a steady diet of Zoloft and red wine. It's the incomprehensible rage you sometimes feel when you see happy, healthy children running around enjoying life. It's the grief that threatens to swallow you whole when your younger child surpasses the older one developmentally." So I'm not the only one who copes with an evening cocktail or two? Kudos to you for being honest on that front! And the playground part really brought tears to my eyes. I know I shouldn't but constanly compare my son to "normal" peers and even his typical siblings who surpass him in so many ways. Thanks for this article. It really touched me.

Tracy March 23, 2010 | 6:25 PM

Although I can understand the frustrations being voiced here--- I feel that a lot of this is part of the grief process that parents of kids with special needs can go through. This is a natural process, but I do feel strongly about 3 main points this parent brings up: First, although she certainly has the right to her feelings, and I'm glad has found a way to voice her feelings, there is no job description for a parent. I think one of the hardest parts of this process is realizing that ANY parent can have a child with special needs--6/every 100 children born has some kind of special need--just as a child. This does not include kids who get injured when they're older, have mental health issues, or pass away. So, the point is, although it is natural to feel cheated, unhappy with one's current or permanent situation, and immensely difficult to watch a child be in pain---there is always a risk when becoming a parent. There is never a promise of a specific "job description". So, part of moving through the grieving process is realizing that you are truly not alone---and that people everywhere have difficulties. Second, it is very true that most people assume they have or own some kind of "normalcy". The reality is, there truly is no absolute "normal". Unfortunately, though, people often are stupid, uncomfortable, and don't know what to say--so they say dumb patronizing things. Believe me--I've heard a whole slew of them. But, on the other hand, I've seen kids without disabilities truly befriend those with disabilities, I've seen friends without a child with a disability truly listen and try to understand what it's like. I think there is a severe danger for parents to segregate themselves from all others who do not have children with disabilities. What example are we setting for our children, if we segregate ourselves? What about all those parents, especially from the last century, who have advocated for the integration and inclusion of their children with a full range of abilities and disabilities? What message do we send---and what ignorance do we perpetuate when we refuse to interact with those who do not have children with disabilities? Believe me--I've had to take breaks away from stupid people--but I've found that when I seclude myself I end up more depressed, more overwhelmed, and more upset, than when I give people the benefit of the doubt, and give others a chance. I may be disappointed a lot--but people can surprise me--and us. Finally, although I understand and have felt the "higher moral superiority" feeling--I found it amazingly shocking to read about. What right do I as a parent have in saying that I am morally more superior than anyone else? We all have strengths, we all have weaknesses. And all parents have trials. Having a child with special needs may make a parent feel like they have more trials---but I don't ultimately buy this assumption. What about a parent in another country who can't afford their child and feels they have to give them up to an orphanage? How about a parent who loses a child? How about a parent who watches their child succumb time after time to drug or some other kind of addiction? Very few parents, in this day and age, ultimately, by the end of their "parenthood" get off "unscathed". All parents have disappointments--all parents have good days, bad days--days where they're in deep dark holes. If anything, my hope is that parenting a child with special needs can help me understand better the holes any parent can fall into--not because it makes me better than others--but because it helps me have empathy that being a parent can suck-- no matter what special or non-special needs a child may have. But, as I previously said--it is a falacy that we believe as parents--that we were "promised" something different. So, I guess (without sounding like "you get so much back")the point is that all parents have to find hope at some point when there seems like there is none---as having children is a risky business.

caroline Gaibel January 03, 2010 | 4:46 PM

I appreciate this post, and it rings true as I find it harder and harder to share my situation with well-meaning friends and family who don't really get it, though they try. I am available for the friend part, and if your friendship is like your writing, we're a good match! I video share my "special " situation on:http://parentingaspecialneedschild/blog/

Robyn July 03, 2009 | 1:29 PM

This is so true. Thank you for writing this. -A special needs parent

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