And for the most part, kids do fit the paradigm pretty well, with a few variations here and there. They generally are walking by about 15 months, they can say about 10 words at 18 months, and the average child is potty trained by 38 months, i.e., about 3 years old.
But when you have a special needs child, forget it.
Milestones don't work at all. Trouble is, the world of pediatrics still tries to apply these average milestones to kids that can never fit into them.
For instance, they are obsessed with those height and weight charts. If your child doesn't weigh the prescribed amount on the chart by a certain time, something is terribly wrong with either the child, or worse, your parenting is in serious question.
When Mishayla was five months old, she only weighed 7 pounds. Now, remember, this child had a heart defect, that at the time, had not been corrected, was recovering from multiple surgeries, and was premature. She was still using her feeding tube for the majority of her feedings.
Yet she was expected to meet the milestones on that damnable chart. When I took her to see the surgeon who had done her bowel surgeries for a check up at five months, the doctor came in, took one look at Mishayla, and in an accusatory tone, asked me "Are you feeding this child?"
I tried to explain that I was giving her a normal amount of feedings; about half was by mouth, the other half was through the feeding tube. He interrogated me further; what kind of formula was I giving her, etc.
Finally I'd had enough. I asked him "I don't understand. Are you accusing me of starving my child?"
His answer was basically yes. "This child is not growing," he said, in his mightier than thou, pompous tone. "She can't possibly be getting enough calories if she weighs only seven pounds at this age. Something has to be done immediately."
He stormed out. I felt like I had been hit in the head with a two by four. Starving my child? All I did was feed her. I spent the entire day trying to get her to eat. Then I began to fear this "something has to be done" stuff. Was he going to take my daughter away from me? Very scary!!
A dietician was sent in to discuss how I could get more calories into Mishayla. I was taught how to mix her formula, putting a certain amount of extra scoops into the water to give her more food. From then on, I would pour about 8-12 scoops into a plastic container, and fill it half way with water.
Once I implemented this, she did begin to gain some weight. But only some, and very slowly.
And she still has never gained much weight. Even now, at age 12, she is only about 60 pounds, and those of you that have seen her eat, know she can probably eat more than the average football player.
And only recently, while visiting her new orthopedist, did I find out way.
According to her doctor, Dr. John Lonstein at Gillette Children's Hospital in St. Paul, Minnesota, children that are born with congenital heart defects and are premature are very often small throughout their life, and never grow to be very large. She is, at 12 years and 7 months old, 4 feet 4 1/2 inches tall, and about 65 pounds.
And according to Dr. Lonstein, she is more than likely at 95 percent of her growth. So why did that doctor at UCLA insist that it was such an abomination for her to be so small, and accuse us of not feeding her?
Yes, that's it!! The milestones!! They have to meet those milestones!! Doing this with a special needs child, especially a child with Down Syndrome, is like trying to cram a square peg in a round hole. It's not going to happen.
After this very painful incident,at UCLA, I did some research. I discovered that there are actually special height and weight charts made up for children that have Down Syndrome. You'd think doctors would know about these things, right? No brainer?
Wrong!!
One of the first times I took Mishayla to see a pediatrician as an infant, he pulled out the old growth chart.
"Well," he said, "she's not even on here."
I pulled out one of the charts that said "For Girls with Down Syndrome, Age 0-2" across the top. "This is the chart you need to use for her," I said. "She may not ever be on that one."
And of course I was right. She is even small on the Down Syndrome chart. But at least it's somewhere in the right ballpark.
I got so every time I took her to a doctor, and trust me, there were many doctors, I'd put one of those charts in my purse. Doctors did not have them most of the time.
It seems exasperating for parents to have to educate the medical profession about our kids. I mean, aren't they the doctors? I certainly don't have the MD.
I personally think they should get rid of those charts for all kids. Everybody is different, no child is the same. There is always some measuring device to tell us who we are supposed to be.
We should all be able to create our own milestones!!! Mishayla certainly has!!!
 |
| Mishayla, age 10 |
No comments:
Post a Comment