The Problem With Raising a Special Needs Child

I’m sure that when some people hear that I’m raising a child with cerebral palsy, their minds immediately leap to the issues I may face. In large part, I am unaware of the specifics–Charlie is my only child and it is from time to time that my aching back reminds me that most three year olds don’t have to be carried or that I notice the ease that comes when I child can actually tell you what hurts when they are crying.

Sore backs and mind-reading aside, there are subtle changes that I cannot deny–they have become a part of who I am and I’m afraid they might be with me to stay. You see, there are problems with raising a special needs child, but they might not be what you think.

  1. I find myself acutely aware of the power of my words and many are now off-limits. I’ve abandoned idiot, dumb, spastic, and moron in addition to the much-reviled “r-word.” Not because anyone is making me, but because I now know that words can wound even if I can’t see the scars.
  2. I see people who used to be invisible. At moments it’s wonderful–I admire that the girl in wheelchair can use a straw–not as easy as it looks! At Mardi Gras I once threw some beads to a man in a wheelchair and was rewarded with a smile that I still keep with me. But it can also be heartbreaking–seeing a child and hoping that their parents are doing enough, that the doctors realize their potential, but not knowing for sure.
  3. Sometimes I congratulate people on their spectacularly advanced child only to discover that they are simply reaching milestones on time. You see, I stopped looking at the baby book a long time ago and have no idea what “normal” looks like any more. I hope my friends will forgive me.
  4. I pretty much blow a gasket when I see someone abusing handicap parking spots. My husband always thinks I’m over-reacting, but can’t help myself.  I also can’t help but notice when a store is set up in a way that would limit a wheelchair user from getting around. Even if we’re not using the wheelchair–it still bugs me.
  5. I’m suspicious of black and white statements. When I hear that a child “will never be normal” I wonder what exactly normal is and who gets to decide. When I hear that someone “would have no quality of life” ask the same  questions. And I will never forget that the child who was supposed to be “brain dead” could work a VCR, DVD player, and iPad at the age of three.
  6. I forget that not every medical crisis is my business and have the rein myself in when I hear about one–restricting myself to saying a prayer rather than Googling the best hospital in the country for that particular issue and finding five blogs in keeping.
  7. I react inappropriately to “bad” news. For instance, during one of my early ultrasounds, they were unable to detect one of the twins’ kidneys. The doctor started to explain that I shouldn’t worry, it might be the angle, blah, blah, blah and I stopped him and said, “oh, it’s fine.” He was a bit taken aback before I explained, “I deal in fatal and not-fatal–this isn’t fatal.” I’m pretty sure he still thought I was a weirdo. And not to worry, the kid totally has two kidneys.
  8. And worst of all, sometimes I get so hung up on therapy schedules,  doctor visits, prescription refills, the latest research, learning activities, etc. that I forget that these things are there to help to our quality of life and not to ruin it. I have to remind myself that as he is, my child is complete and not in need of “fixing.”

The essential “problem” is that I’ll never be who I was before.  I’ll never be able to move blindly past some of the neglect, carelessness, or even callousness that I was previously unaware of.  My innocence is gone–that’s the problem. And frankly, I think it’s OK–I like this version of myself better anyway.

Related Posts Plugin for WordPress, Blogger...

Comments

  1. Yet another great post! I have been reading your site for just over a week and I am very happy I found it. Thank you for writing what you write. #4 is a huge issue for me. I have been known to write nasty notes and leave them on the windows of cars that are parked in handicaped spots and do not have plates or placards.

    • I wish I had the guts to leave a nasty note! I just get really mad and complain out it to my husband who thinks I’m overreacting.

  2. I believe I have had every thought you shared here… you put it all perfectly!

  3. Katy ~ All I can say is WOW! You know exactly what to say. You are so inspirational! I just recently found your blog through another friend and boy am I glad I have found you. I can’t wait to see what you’ve written next. Thank YOU for allowing us to follow your story and journeys. I will definitely be following :)

    Lori Osero

  4. I like this list.

    At first, when I saw your blog title on my blogroll, I thought you’d solved everything. ‘THE’ problem with raising…and I come here and it’s a list. You TEASE…

    I grok all of it of course, and probably would add a few of my own. While most of yours have that nice, Katy-do optimism many of mine would have that Lilly-esque pessimism. One of mine might be ‘I no longer feel very comfortable around so-called ‘normal’ people at functions I used to attend regularly and not feel this way.’ Stuff like that.

    Damn…I miss oblivion.

    • They say ignorance is bliss.

      I’m over “normal” people. I know lots of people who go on and on about t-ball and whatnot, and I can’t convince myself that it would be interesting even if my child were typical. Maybe I’m in denial. I like people who are doing and writing and moving and shaking and generally making the world better or more interesting. Again, it could be denial, but I’m OK with that.

  5. I can relate to many of these. I’m especially having trouble with the last one, I’ll admit. As we’re approaching the year mark of M’s diagnosis, my resolution is to be able to “let go” a little more and try not to worry so much about it all. He is who he is, I adore him, and I shouldn’t worry about “fixing.”

    • The not fixing is a fine line and I think we walk it every day. I love Charlie just the way he is, but I want him to have options in life too. The trouble is figuring our where providing him with opportunities ends and “fixing” begins.

  6. My uncle is literally moving to a bigger town because the small-town grocery stores are set up in a way that makes it impossible for him to manuver his wheelchair. Between grocery shopping, other errands and this or that doctor he was driving to said bigger town more than staying home.

    • My aunt uses a wheelchair and she lives in Denver, which is supposed to be incredibly handicap accessible. She can ride the bus and go shopping by herself which wouldn’t be an option down here.

  7. “My innocence is gone–that’s the problem. And frankly, I think it’s OK–I like this version of myself better anyway. ” honestly this statement says it all. I feel that I am a better a person and parent because of this loss of innocence.

    ((hugs))

    • I do to. It can be tough sometimes to have all this awareness, but I think it’s a good thing too.

  8. Ahh this hits the nail on the head! Thank you! Crazy crazy how everything changes when you have a special kiddo! Eight months ago, I was just like everyone else, completely oblivious and totally inconsiderate of others who are struggling. Never even entered my head that there is such a huge population of parents and adults who’s life everyday is a miracle. Took my son to teach what life really means! And yes, I was guilty of using all those “bad” words and yes, sometimes hanging out in a handicap parking spot. NEVER again! (well we will probably have a handicap sticker eventually anyway) I also want to agree with one of the above comments about feeling weird around “normal” people with “normal” kids. Nothing to talk about anymore! And when I met another special needs mum its like, ahhhh now I can really have a good conversation! Thanks again.

    • I love my special needs mommy friends, but sadly, most of them live in the computer. I do think that stuff gets easier as time goes by–I can find commonality with “regular” moms–but especially in the beginning I just had nothing to say.

  9. I could see myself in, well…pretty much all of these! My daughter has CP and my son has Down syndrome, so I have no idea what “normal” is supposed to look like! So glad to have found you! Good luck with your upcoming birth and come visit me sometime at bringingthesunshine.com.

    • Hi, Andi! I’ll definitely come stop by–sounds like you’ve got quite an interesting household.

  10. Well said Katy! Hailey is now 4 and a couple of years ago it dawned on me that she didn’t need fixing.(my exact words) but i definitely enjoy helping her and she is soo proud of herself when she accomplishes something no matter how small.

    • Yes to this! I do enjoy watching Charlie learn new things and acquire new skills, I just do my best to remember that as he is, my child is fine and these things are just there to help him.

  11. HAAAA. No. No, you are not overreacting to people who abuse handicapped spots. I go OUT OF MY FLIPPING MIND when people do this. OUT OF MY MIND. I’ve left notes. Yes. Yes, I have.

    Please don’t hate me for abusing the Stork Parking at Babies R Us, though. I do, on occasion, but only when there are many open spaces. Besides, I THINK IT IS A GIMMICK and ours has FIFTEEN. FIFTEEN STORK SPOTS. AND TWO HANDICAPPED SPACES. Please tell me why an able-bodied pregnant woman gets to park in front when some poor post-partum mom with a swollen vagina and a heavy carseat has to yield to SHE WHO IS FOUR MONTHS’ PREGNANT OH MY LANDS.

    And I think, personally, we could all use what’s “wrong” with you. And I should tell you that although I have a “typical” child, I threw the baby books out ages ago. I go by my gut, and by my pediatrician, and screw the rest.

    • I’m pretty sure stork parking is a marketing ploy although I am happy if I find an “expectant mother” spot at the hospital–this belly of mine is getting heavy.

  12. I loved reading your perspective about this. Usually, when I read your posts, I think, “Ah! She put exactly what I was thinking into eloquent words!” In this case, though, several things were different — since I was a mom for nearly eight years before entering special-needs motherhood, the order in which I approached some of these things was different. Also, since my daughter with special needs has older sisters as well as a typical identical twin, there has not been one day that I have wondered where she would be developmentally if she were typical (and that was especially difficult the first couple of years). Again, it is great to read your experience. I also admire your closing comment — “I like this version of myself better anyway.” I’m not sure I can say that about myself right now, but I hope to get there someday.

    • I am sure things would be different if I had had a typical child first. In fact, I often sense the frustration is great for parents who have already had a child and seen how simple things can be. For me, therapy and delayed milestones are just the way things are.

  13. Great post! I am still working on that last one. I am new to the stay-at-home mom thing so I sort of feel like a first time parent even though she is 3 1/2. I guess I still feel like I need to fix her. I also feel responsible for whether she is doing good or bad in therapy or whatever else it happens to be. Funny thing is, I never blamed myself when she was born, but now I feel like if she isn’t doing something she should that it is my fault. I feel like that guilt came out of nowhere on me! So I have to work on that!

    • I think that the guilt we have over our Children’s behavior and even milestones is really deep-seated and hard to shake. We do the best we can, but it can have a way of sneaking up on us from time to time.

  14. Oh this was so beautiful! You are wise beyond your years. I would never trade a day of our experiences for all I have learned over the years. I almost feel priveleged to have walked this walk.

    Charlie is still young, as the time goes on the rewards will continue to outweigh all the many challenges you face on a daily basis.

    What a gift these special children are! Where my son lacks mentally he far exceeds my other sons in ways I could never put in words.

    And even our cancer journey was another eye opener. I’m grateful the Lord felt I was able and equipped for such a challenge.

    Would love meet you boy!!

  15. You’ve outdone yourself this time! I love and relate to every word. Do you mind if I share this on kidz?

  16. Christy says:

    I laughed at and totally related to number 7. Our pediatrician thinks I am totally nuts, but he totally respects my opinion and treats me more like a peer. I am truly blessed to have found my kiddos doctors (at least most of them :) ). I am new to your blog and read your post on an adoption blog of all things. Just wanted to say hi from a fellow New Orleanian who has been gone a while.

  17. Great article,I know what you mean!Things that may bother some people tend not to bother me now~I’ve seen worse!