Saturday, June 30, 2012

What defines a “special needs” child?

The formal definition of special needs is “the individual requirements of a person with a disadvantaged background or a mental, emotional, or physical disability or a high risk of developing one”.  I consider myself to be a parent of a special needs child, specifically because Wendy has a chromosome disorder, which resulted in her having a colostomy, feeding tube, and many other malfunctions in her organs. However, the doctors have Wendy listed as having a permanent disability. The way I look at it, is that her disabilities are temporary. Her colostomy should be gone within six months. We eventually hope to completely have her feeding tube gone. And we have no way of knowing if she will be developmentally challenged or not. So, if she has her two surgeries and gets rid of her colostomy and no longer needs a feeding tube and is not mentally handicapped, is she still considered special needs? Will she always be labeled special needs because her organs are mixed up and she has a chromosome abnormality? I’m not sure.

Every doctor we have seen seems to think she will have developmental delays. How severe? They’re not sure. But because of her having a chromosome anomaly, they seem to automatically think she’s going to be intellectually disabled. I don’t think that’s a fair assumption. I’ve never raised a “normal” child, but seeing other babies, my Wendy doesn’t seem to be far behind them, in mental or physical milestones, other than her being almost nine months old and only a little bigger than the average newborn. I’m not saying the doctors’ opinions are wrong, I just don’t think we should assume anything about Wendy because she has proved to be quite extraordinary so far. When I was pregnant and they saw her unbalanced translocation they told me they didn’t even know if she would live, simply because they have nothing to go by. Well, that’s kind of how I feel about them saying she’s going to be disabled all of her life.

It just makes me wonder if I will have the title “special needs parent” all my life (not that that’s a bad thing, because parents of special needs children are usually some of the most exceptional parents out there). I won’t ever be able to say my daughter is 100% healthy because internally everything is not as it should be, but from watching Wendy I don’t know that I will always have to say my daughter is disabled. At this point we are not sure about anything. The only thing I am absolutely positive about is that Wendy is the most perfect little miracle I could’ve ever wished for. And whether I only get to take care of her until she’s 18 or if I have to take care of her until she’s 80, I will love her just the same as I always have.


  1. As any parent knows, every child comes into a family with an abundance of needs: to be loved and cared for, nurtured, fed, clothed and educated, among other things.

    So I guess typical kids are very much like special needs kids. Some have more issues then others, but in the end all kids are special.

    Our girls is beautiful beyond compare, they are so sweet and kind, and their brilliance does shine through their eyes, and yes they are labeled as a special needs kids with a very serious disability.

  2. Hi, I was reading your blog. I found it wall googling ladd's surgery and malrotation. Your little Wendy has gone through so much and I just want you to know your blog has helped me a lot. My daughter was born at 29 weeks, she is 7 weeks old friday and we were starting to discuss dishcharge, she was all the way up on her feeds on room air and doing great! Then Friday around noon everything turned for the worse! By 1am she had to have Ladd's procedure. She is on the vent because of the morphine drip. My question for you is how long before did wendy pass her first stool, how long did it take for the NG tube to stop sucking out stuff from her belly? How long was she on the vent? on morphine? How long before feeds? I cant find much on the internet about preemies and the ladds procedure and the dr's arent giving me the answers i want :)

    1. I definitely know how you feel about doctor’s not giving you all the answers you want and as a parent you need. Wendy was on the ventilator from Monday (the day she had surgery) to Friday morning. She was on a morphine drip for 7 days, but the last two days, they were just weaning her off. Luckily it didn’t go past a week because if they are on a morphine drip longer than 7 days, they will put them on methadone when they take them off the morphine because of dependency and withdrawal symptoms (or at least this is what they do at Vanderbilt). The replogle (the thing sucking everything from her stomach) came out the day she came off the vent. Wendy had a g tube inserted when they did the LADDs because she can’t take any food by mouth. They began trying to give her feeds Sunday, Nov 27 (she had surgery Monday, Nov 21) but she had problems with her g tube leaking. So she had to go back on TPN and lipids for almost 2 weeks before they attempted to feed her again. As for her passing her first stool, I honestly don’t remember how long it took- Wendy has a colostomy bag, so she doesn’t poop normally anyways. I hope I answered most of your questions. And if you have anymore, or just need someone to talk to, my email is

  3. I think that with wonderful parents like you guys and the good Lord's help, Wendy can achieve anything! :) You are both special in the very best of ways!

  4. Just found your blog. Thanks for sharing your story with us all.