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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What a horrid story of US medical tunnel vision and consequent incompetence. I am so sorry you went through all that.

While it was a disaster, I did manage to become an amateur neurologist and geneticist in the process. *laughs*

Mostly I'm just happy we were able to secure a diagnosis while his neural pathways were still in the mood for growth spurts.

Imagine the health cost savings if your son had been correctly diagnosed on the first or second presentation!

... and sanity. There would have been quite a cost savings in sanity as well.

And you? It took a long time for you to get that vital diagnosis, also. How did the world handle you before that?

Me? Oh, I simply assumed I was stupid. I began receiving the "doesn't work up to potential" comments in grade school, and barely squeaked out a diploma though a combination of luck and pity.

I was twenty-four when I gave birth to my daughter and, as a stay-at-home Mom, turned to internet debate clubs for adult interaction. As new friendships formed, I began receiving not-so-subtle hints that I should pursue a degree. When I insisted that I simply wasn't smart enough for college a few of those new friends ganged up on me and demanded I take an IQ test.

147. Apparently "stupid" was a false assumption.

I did a bit of research and stumbled upon a study on the effects of AD/HD in high IQ students. Seeing myself in the study, I made an appointment with my doctor, who sent me to a specialist, who diagnosed me after some two hours of testing.

What do you think might have changed or been avoided if you had been diagnosed in Kindergarten?

I think the damage to my self esteem is the most significant issue that may have been avoided with an early diagnosis. "Doesn't work up to potential" suggests a student simply isn't trying, and by the time I reached High School I no longer was. "Can't work up to potential" would have been far more accurate.

As for what may have changed... it's likely I would have reached my current "state of being" a great deal sooner and wouldn't be heading off to college as a thirty-six-year-old Freshman. *laughs*

[I have wondered this about myself, too. I had a difficult time in normal school. It was not until I was in my mid twenties and my university went over to open book "continuous assessment" that I finally shone. My rote memory ability is quite weak and fickle compared with my comprehension and information processing abilities. I went from an average to poor examination candidate to a superior performer almost over-night :-) ]

There is quite a bit of evidence suggesting that rote memorization issues in individuals with AD/HD are actually issues of information storage and retrieval. (I apologize if I'm rehashing information that's already been discussed.)

If you think of the human brain as a filing cabinet, a typical mind stores information in a conscious and predictable manner - math knowledge gets tucked away in a little folder labeled "Math", social information in a little folder labeled "Contacts", and so on. This makes it quite easy for a typical mind to retrieve information - it simply accesses the nicely labeled folder and pulls out the bits it needs.

The AD/HD mind, however, seems to store information in a subconscious and symbolic manner - math knowledge might get stuffed in a folder labeled "Clocks" because the eyes were taking a nice snapshot of the time while the teacher was explaining the assignment, information about a new project at work might be stored in a folder labeled "Uncomfortable Sensations" because you realized you had to pee half-way through the meeting. The information is all there, but there's little rationality behind where it might be filed, leaving the mind to search for it aimlessly.

There are some strategies one can use to combat this, such as placing a red folder on the desk while you're in math class, storing all math homework in red folders, covering your math book with a red cover, and then placing the red folder on the desk when you sit down to do your homework later that evening. It's not perfect, but it's better than nothing. *smiles*
"The AD/HD mind, however, seems to store information in a subconscious and symbolic manner...... The information is all there"

I think I have a different problem. I have trouble getting the stuff in if it has no strings attached to it. I have become adept at providing "strings". I also became super-duper organized. I organize information as a way of remembering it. In order to process complex information I have to summarize it enough to fit in my rather small working memory box.

Interestingly enough, I have no problem with very short term verbal memory span, such as digits, but have a little more trouble with visuo-spatial span.

I think badly on my feet. My best work comes when I have time to write things down, and then to proof read and rewrite several times. I have no trouble with fiction, or anything free-flowing and semi-random which does not need to be organized and/or remembered. Non-fiction is a challenge. The more information there is to sort, the greater my stress and the more time I need to produce something compared to other people given the same task. The up side is that the organization demands usually results in a superior end product - if, and only if, I have sufficient time to write, rewrite and discard the copious irrelevant or out-of-context garbage.
Glad to get your story. What a mess. But then I doubt any of us here have a strong faith in the medical establishment. Hell's bells: I do educational materials for that lot. I surely feel the ignorance daily.
There's quite a bit with the medical establishment that could use fixing - continuing education requirements would be one nice addition.
Unfortunately continuing education requirements are often so badly organized that it becomes a rort for those concerned. Conferences are expensive in terms of time away from work and family (often impossible if you have dependents who cannot take care of themselves). Other things are also costly: plane fares and other transport costs, meals and accommodation away from home.

For those who have built-in babysitters, or who can afford the more expensive paid kind, conferences become an excuse to have a holiday at your employer's or patients' expense.

OTOH, conferences provide academics with revenue in countries where research funding is scarce and has unwelcome strings attached.

The best kind of continuing education is the on-line availability of selected reading material followed by a set of questions which probe understanding of the material and/or stimulate further learning.

Non-US countries improve the situation by accelerating Secondary Education, starting medical training earlier (at the age of 17 following an international level Year 11/12 sequence) and continues for 5 or more years. International medicos have a much broader medical background before specializing. Basic training usually includes surgery as well as pharmacology.

Many procedures done by US specialists are routinely done by the standard "general practitioner" in other countries. With a wider knowledge base there is less likelihood of missing important medical information and a greater chance a person will be referred when appropriate and referred correctly.

The US medical profession has the additional problem of being controlled by insurance clerks who practise medicine without a license and business managers who insist that the doctor sacrifice time and good medical practice for money. The average US practitioner does not have the time required to get to the root of anything but common ailments and routine problems.

The Aussie system was not perfect, but it was heaps more efficient and accurate than the Californian one.
There is a requirement for continuing eduacation. I Have to take 30 continuing ed units every two years to renew my licence and doctors have similar requirements. The CEUs can be anything that enhances your professional developement. Fortunately or unfortunately, people tend to take classes in subjects they are interested in. In order to continue a broad based education, you have to continue to take the time to educate yourself through journal articles and publications. Another problem I run into again and again ad nauseum is the pervasive woo peddled in the name of science. It is disgusting to pay $400 to $500 to fulfill my requirements in my field of practice at a conference that looks interesting based on the description on the registration booklet, to attend and find that half of it is woo based. This happened to me just last month. If the doctor or nurse is not a critical thinker, s/he may fall for the woo hook line and sinker.
Tanya I am laughing out loud reading your story, hearing a reflection of my own experiences.

"He is just a boy" is a great mantra!

Sam enthusiastically ate raw lemons, skin and all at age one. He put his hand on a burner at my fathers house until he had blisters and did not register the pain. He smashed himself against the floor, repeatedly, just to "feel". I thought - hey I have a tough little boy who doesn't cry when he gets hurt and I can even take him out for Indian food, as he loves hot spices! He was very "active" - the "whirling dervish" kind of active. He could not sit still.....at all.

Neither his pediatrician nor his school could offer any help in figuring out what was going on.
Thankfully, I had a friend who was an occupational therapist and she noted his toe walking and lack of reflexive responses and suggested he might be tested for SI. That was just the beginning.
My girl is Jessica. She has multiple disabilities. I gave her story on the main group page.
HI Mike. Nice to have you here. Just telling the story seems to help.
My special needs guy is Danny. He's 19 and I am his mom and legal guardian. Danny is in the "moderate/severe" range on the mental retardation scale. He is mostly non-verbal and is cognitively around age 5.

Danny is graduating high school this year, after being in the public school system since he was 3. He attends a special "after high school" high school that is very small and only has DD kids and (believe it or not) our local military academy. In June I'll be a squashy mess as he walks across the stage in his cap and gown and receives his certificate. Who'da thought?

Danny had epilepsy as a child but thankfully outgrew the seizures. He also has what is known as Intermittent Explosive Disorder, which is an emotional disorder that causes him to throw horrible tantrums at the drop of a hat. THAT lovely disorder started when he was about 2. Thanks to my diligence (no, I'm not egotistical), I finally found Dan a good psychiatrist who was willing to work hard with him until the right med cocktail was found to control his behavior (when Dan was around 16--finally!!). Presently he is a happy and very positive kid--I very rarely see the behaviors coming and by now I've gained the skill of cutting him off at the pass before his "line" is crossed.

Dan moved into a group home one year ago this month. It was the hardest thing I've ever done. A strange set of circumstances all fell into place quite unexpectedly and my husband convinced me that it was time to try. The group home is BEAUTIFUL and the caregivers are the best! Danny lives with 3 boys and 2 girls--all of which were former classmates of his for years. It's like living in the "best buds" house.

He started working last summer at his very first paying job. It's piece-work from local companies who are caring enough to give our kids the opportunity to achieve and be proud of themselves. The projects vary, but the workplace is positive, he has lots of peers to socialized with, and he brings home a paycheck to boot! After June, my little man will go to work full time. Who'da thought?

Being the parent of a child with disabilities has shaped me into a better person than I ever would have been without him. I've certainly learned the skill of celebrating even the smallest of victories. My son is one cool kid!!
Hi! I have a son, just turned 2, who has Glycogen Storage Disease type 1b. Its a rare metabiolic disorder that prevents his liver from processing the sugars that comes in almost everything! It causes a whol line of problems with it.
We spend a whole lot of time in the hospital, and are currently waiting on recieving his wheel chair, and legg braces, and walker to help with his mobility. Because of his disease he is currently on a feeding pump through his NG tube 24/7 to help keep his blood sugars up.
There is no way I could be without him, I quit working so that I can make sure he is being properly taken care of.

I do want to know if anybody who reads this has problems with people constantly saying, "im going to pray for you, whats his name?"
and what to do when the staff at the hospital say "well god is taking care of you, trust him"
and when they bring in donations from the church..
It gets old and tireing..
Yes, it can be annoying.

My son was in the Special Care Nursery over his first Christmas. The Chaplain made sure to put an angel decoration on his cot, in order to counter the effects of the red FreeBSD Daman which we had put there. Red is a good color for babies as they can only see this end of the spectrum in the first few months. A Damon, which is a guard for death's door, could easily be mistaken for the Christian Devil as it has horns and a tail and holds a forked stick. We tried to explain .... :-)

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