Mine is Ben, age 12. He has Down Syndrome and a number of accompanying medical difficulties. Fortunately most of his big medical problems are reasonably repaired or under control. That situation of course only follows due to years of surgeries, medications, time in hospitals, wife and I becoming seat-of-the-pants medical experts, and so on.

Ben still has trouble speaking clearly enough to make himself understood, and he has some hearing loss. Developmentally he's about 4-7 (depending on what abilities you're looking at).

The big plus to Ben is his bright, happy, outgoing personality. And of course his indomitable spirit. This little guy can show love, give hugs, and smile through anything. I do think that his indomitability is largely responsible for him being alive. This is the kid who came out of open heart surgery and was immediately ready to get up and get on with life. We had to put boards on his arms and watch him just so he wouldn't pull out his tubes and wires and get out of the bed. What a trooper.

Tags: down syndrome, open-heart

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Replies to This Discussion

I would have thrown a fit!! Were about to go back to the hospital here in a couple weeks, and they always bring in a prayer bear! Like every day they try to bring a new one!
Then when we take out sanity breaks from being in the hospital room all the people in the cafeteria are always saying "well whats his name, so I can pray for him" ..... dont they mean "prey" on him?? Seems like its all they really want to do.
So what did the Chaplain say about it when yall tried to explain?
The Brights network have put out a list of suggestions on how to deal with this minor annoyance. Take a look here:

http://the-brights.net/movement/toolbox/p4y/
They want to pray because they know there's nothing they can really do. It's a human response to helplessness; an effort to feel like you're trying to do something even when you're powerless. That's the whole reason why people have imaginary deities to start with.

Just let them have their poor games. Tell them your name, or your kid's name and send them on their way. Ditto when they say, "god's taking care of him". They just don't know any better what to do. They never have thought about it, they don't even remotely realize how silly it sounds, and to try to point it out to them would just be hurtful, and they wouldn't get it anyway. So condescend, then send them along.

As for donations, hell yeah! Take 'em! I'd take cash, food, clothing, etc from drug dealers (as long as I was sure the food wasn't hash brownies). Free stuff's free stuff. A gift's a gift. Take it and say thank you. If they say, come to our church, say, "No thank you." Be polite, but firm.
Thats a good way to look at it, if they want to give it away, who am I to not take it? lol

Ill avoid the brownies too..... lol
many years ago in a wild life film I saw a horned sheep challanging and running after a wolf for safty of his offspring. Parents like you seems to me like that. Have a big big heart, fighting nature tirelessly. I always had a lovely feeling for such people. I hope your Ben have a long and happy life. All of my heart for you people.
My oldest daughter has ADHD (inattentive variety, diagnosed when she was 6) and this past spring (she's now 10) was diagnosed with learning disabilities as well. Our story is nowhere near as crazy as some of the others posted here, but it's still an ongoing struggle to get her through school and keep on top of things. Fortunately she was a terribly healthy infant, no more than normally rambunctious; happy and incredibly social. In retrospect the only thing that might have been a clue was her sociability (and who doesn't want a friendly baby who loves everyone?). She never could self-soothe to any great degree, and I would still say she "can't stand her own company". But everything was fine right through pre-school.

She was diagnosed with ADHD (inattentive variety) in Gr. 1, and though we struggled with treating it, medication initially seemed to help a lot. But her difficulties with reading and math persisted. M + A didn't equal "ma", and the connection between 5+4=9 and 9-4=5 always mystified her. This is a kid who gets on well with EVERYONE, her teachers love, who people have described to me as "a light in the classroom". And she was still flunking or barely scraping by. Watching your eight-year-old bang her head against the table and write "I am stupid" all over her homework again and again breaks your heart.

Finally last year, my younger daughter started gr. 1, and watching her learn to read and do math really drove home to me the problems my older daughter was having. M + A = "ma" was almost instinctual to my younger daughter; the numbers line themselves up and dance in her head. She *gets* it. I talked to the resource-room teacher (a lovely lady my older daughter adores, and who I think is responsible for just about everything she did manage to learn in grades 2-4), and the long-awaited screening for learning disabilities by the school got bumped to the fore. (Which is good as a private screening was going to cost upwards of a thousand dollars, and I was seriously looking into it by that time). My daughter scored high in verbal/oral testing, normal to low-normal in most areas, and extremely poorly in abstract/conceptual reasoning. Which had her teacher and I nodding at each other in understanding. While this was a revelation, figuring out how to apply this understanding to teaching my daughter better is still something we're working on. I don't just want the school to make accommodations---for example administering her tests orally---I also want her to get the extra support to improve in her areas of weakness, at least to a functional point. It has majorly helped in some areas already, though---instead of her freaking out for hours over having to write a short story for her homework, she dictates it to the voice-recorder on the computer, then plays it back and writes it down; we are trying to practice things like spelling and multiplication tables orally, more. Encouragingly, I had a first meeting with her teacher last month that DIDN'T start with a staggering list of academic problems she's having. Although her reading is still low for grade-level and she still has difficulty decoding new words, her sight-word vocabulary is large enough now that she can read basic instructions in class without struggling too much (though it's still difficult when many of her friends are reading full length novels for fun). I don't think math makes any more *sense* to her than it ever did, but we're making some progress with memorizing the mechanics of the basic problems, even if she still doesn't grasp the real meaning behind what she's doing. She still has a hard time reading a book or text, absorbing the information, and then regurgitating it for a test, though. On the other hand her spelling is finally progressing.

The biggest downside of her keen social awareness is that she's very in tune with her own lacks. She knows when she's falling short of her peers, and she feels it. I really wish I could have found a way to figure all this out before she decided she was stupid. I really hope she can find a way to understand that she's not.
Haven't seen any action on this board in a long time. It's nice to "see" a new face. Good for you for fighting for the screening of your daughter! It's a shame when parents of cognitively disabled kids have to practically give an arm to get the help they need! Schools are understaffed/under-trained and our kids are paying for it.

It's great to hear that your daughter is progressing. It must be SO hard to deal with her self-hatred. That issue is one I am thankful I have not had to deal with. My son is mentally disabled to the point of not really even caring about his lack of skills. He does what he does and we always praise him no matter what the end result. I don't think he really even knows...

The idea of voice recording everything your daughter does is a great one! As you know, frustration is a horrible thing to deal with when it comes to watching your child struggle. I've developed (sometimes weird) strategies over the years to help my son cope with his frustrations of not being able to communicate. If I can imagine it, I try it.

Has the school created and IEP (Individualized Education Plan) for your daughter? If she has special needs she is surely entitled to one. In case you don't know what an IEP is, it's a document (sometimes several pages long) laying out a plan for your daughter's methods of learning and the accommodations she will receive at school. This plan is put together by everyone who is involved with your daughter. First and foremost YOU should always make your wants/concerns known. As her parent you have the biggest "say" in what goes on with her. Any teachers, therapists and aides should also be involved. It's a good idea to have the principle sit in at the meeting as well. This will assure you that what is being written down can make the school accountable if anything ever goes the wrong way. Make sure you fight for everything you believe your daughter needs in school. If you're soft in the beginning then the schools will walk all over you from that point on. It's all about the money you know...

Keep helping your daughter find ways to cope with her shortfalls so she will KNOW that she's a GREAT person and she should love herself for it!
Yes, she's had a personal plan since gr. 3 (they are called IPPs here in Canada... same idea ;) ). She is much more socially aware and sophisticated than I was at her age (I was pretty off in my own little world) and while it makes some things easier, it makes other things harder. I find keeping in regular touch with the teacher is the best thing I can do to keep us on the "same team"---I think the worst is when you end up at odds with a teacher or feeling like they're abandoning your child or giving up. It's a particularly bad time for the public school system here as there were a lot of cutbacks this year, including a LOT of resource people; I was worried enough over the summer that I was looking up private schools in the area that specialize in kids with learning disabilities. But that a) takes money we don't have, and b) would require moving our younger daughter to another school (long story), so we haven't pursued that route... yet.

I would love to see more action here... there are some fascinating stories posted already!

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