Pure inspiration!!
Thursday, October 11, 2012
Wednesday, October 10, 2012
31 for 21: Infantile spasms
I just read something about Down syndrome that I didn't know!
Noah's Dad wrote about Infantile Spasms, which apparently occur in 8-10% of all children with Down syndrome. They are easy to miss, and also easy to confuse with other, benign behaviors of Down syndrome children. However, these spasms can lead to severe developmental regression. Apparently there is a very expensive steroid treatment which can reverse the damage. Please read the info at the link. It is fascinating!
This seems to offer an explanation of why most kids with Down syndrome seem to do really well with aggressive therapy, while some seem to be stereotypically "profoundly delayed" -- non-verbal, non-mobile, totally dependent. It also might explain why some of the children in the orphanages are placed in the "laying down" rooms at an early age, and end up doing very poorly. Some of them are even listed with "epilepsy" -- could that be a misdiagnosis of infantile spasms? Certainly, a child who is already delayed due to Down syndrome, compounded by orphanage delays, cannot afford the additional handicap of seizure-induced regression. If they are not seen to be mobile, they are left in their cribs. If they cannot self-feed, their bottles are propped for them. They are not given any opportunities to interact with the environment, and they sink lower and lower. They can be redeemed by a dedicated family, but the effort required for every step of progress is quite intensive!
Most of the orphans with Down syndrome, however, do develop rudimentary skills, which they can build on rapidly when placed in a loving family setting with the usual therapy regimen.
It really puts a different spin on the whole Water and Fire thing.
Noah's Dad wrote about Infantile Spasms, which apparently occur in 8-10% of all children with Down syndrome. They are easy to miss, and also easy to confuse with other, benign behaviors of Down syndrome children. However, these spasms can lead to severe developmental regression. Apparently there is a very expensive steroid treatment which can reverse the damage. Please read the info at the link. It is fascinating!
This seems to offer an explanation of why most kids with Down syndrome seem to do really well with aggressive therapy, while some seem to be stereotypically "profoundly delayed" -- non-verbal, non-mobile, totally dependent. It also might explain why some of the children in the orphanages are placed in the "laying down" rooms at an early age, and end up doing very poorly. Some of them are even listed with "epilepsy" -- could that be a misdiagnosis of infantile spasms? Certainly, a child who is already delayed due to Down syndrome, compounded by orphanage delays, cannot afford the additional handicap of seizure-induced regression. If they are not seen to be mobile, they are left in their cribs. If they cannot self-feed, their bottles are propped for them. They are not given any opportunities to interact with the environment, and they sink lower and lower. They can be redeemed by a dedicated family, but the effort required for every step of progress is quite intensive!
Most of the orphans with Down syndrome, however, do develop rudimentary skills, which they can build on rapidly when placed in a loving family setting with the usual therapy regimen.
It really puts a different spin on the whole Water and Fire thing.
31 for 21: Simchat Torah
I totally missed blogging about Simchat Torah yesterday. This is the final holiday in the busy month of beginnings -- Tishrei.
We start with a new year.
Then we turn over a new leaf when we atone for our sins on Yom Kippur.
We spend 7 days in the sparse structure of the Sukkah for Sukkot.
And on Simchat Torah we do the Great Rewind -- we unroll the entire parchment scroll of Torah, and roll it back up to the Beginning -- a new start to reading the Pentateuch. "In the beginning, when G*d created the heavens and the earth...."
It is noted that the last letter of the Torah is "Lamed".
The first letter of the Torah is "Bet".
Together, they spell "Lev" = "Heart".
On Simchat Torah we dance with the newly-rewound scrolls with joyous abandon, pouring our hearts into the words that have sustained our people for millenia.
In the Beginning.
We start with a new year.
Then we turn over a new leaf when we atone for our sins on Yom Kippur.
We spend 7 days in the sparse structure of the Sukkah for Sukkot.
And on Simchat Torah we do the Great Rewind -- we unroll the entire parchment scroll of Torah, and roll it back up to the Beginning -- a new start to reading the Pentateuch. "In the beginning, when G*d created the heavens and the earth...."
It is noted that the last letter of the Torah is "Lamed".
The first letter of the Torah is "Bet".
Together, they spell "Lev" = "Heart".
On Simchat Torah we dance with the newly-rewound scrolls with joyous abandon, pouring our hearts into the words that have sustained our people for millenia.
In the Beginning.
Tuesday, October 9, 2012
31 for 21: Why community is important
For this installment of 31 days for Trisomy 21 awareness, I want to talk about the benefits of helping children with special needs in a community. My faith community includes several well-integrated children with Cerebral Palsy, but I have seen very few other disabilities represented. There is one child in my children's school with Down syndrome. Other than that, there's the usual crop of ADHD, and the occasional case of Asperger's.
A blogger I quoted a couple of days ago answered the following question from a reader today:
Quite besides the benefit to a child who is being rescued from a dead-end situation in an orphanage or mental institution, bringing children with special needs into a society that increasingly sees prenatal diagnosis and abortion as an acceptable "cure" for congenital differences can bring about a change in perspective. Learning to appreciate people with very different abilities creates a richer community, where the "typical" spectrum is broadened. After all, once you have learned that it makes no sense to bully someone because of a severe or obvious disability, does it really makes sense to bully someone who is short, or lisps, or wears glasses? Once we have learned to appreciate the internal qualities of people who look different, will we be so "look-ist" in our selections of friends and spouses?
A blogger I quoted a couple of days ago answered the following question from a reader today:
When I had my son 10 months ago, he was born with Down syndrome and while I didn’t know any of the health implications, the first thing that came into my head when I saw him, was, “Oh no, he is not going to be smart and he will be hard to understand when he speaks.” I want to know why I had that expectation because reading your blog and others has proven the “not smart” part very wrong. My son proves to me each day how smart he is by how hard he works and fought to live through heart surgery and feeding difficulties and how hard he works now. Every person who I’ve talked to since my son’s birth has said how enjoyable it has been to work with people and children with Ds. If people with experience in this know the truth, why is the opposite a commonly held if false belief? Who is spreading this lie about what smart looks like? I’m chagrined that I felt that way about my son at this birth and grateful that I found reality to be better than I had expected. That is what I want Down syndrome awareness month to do – to give people a good gut feeling when they think about Ds, and not a pit of fear and discomfort and pity.
Your questions may have been intended to be rhetorical, because I’m just one person and unlikely to know The Answer, but I’ll give you my opinion. I’ll take the second question first, because it’s the toughest.
There is no doubt that medical textbooks repeat the “facts” about IQ, as does virtually every website or clinical resource available. Doctors (who, I might add, are generally people who value intellect) are taught in medical school that people with Down syndrome have lower IQs – i.e., that they aren’t smart. Of course, the belief isn’t limited to doctors, but having the experts say it does lend it more credence, don’t you think?
People tell us all the time that Nathan is “smart” and I often wonder what they mean. Smart for Down syndrome? Smart compared to typical kids? Clever? Are they just being nice (I don’t believe that one). His new preschool teacher, who’s been in the business for years, says she doesn’t see any difference in him intellectually than the typical kids.
The answer to the first part is probably that the people with experience are too few and the people without it are too many. That’s why inclusion is SO important. Case in point: the story I linked to in Sun-Beams recently about the young woman crowned Homecoming Queen at her high school. The media made a big deal about it, but the students didn’t understand why it was a big deal. She was well-liked so she won – end of story. The more our kids spend time with their typical peers, the more comfortable people will be Down syndrome.
Quite besides the benefit to a child who is being rescued from a dead-end situation in an orphanage or mental institution, bringing children with special needs into a society that increasingly sees prenatal diagnosis and abortion as an acceptable "cure" for congenital differences can bring about a change in perspective. Learning to appreciate people with very different abilities creates a richer community, where the "typical" spectrum is broadened. After all, once you have learned that it makes no sense to bully someone because of a severe or obvious disability, does it really makes sense to bully someone who is short, or lisps, or wears glasses? Once we have learned to appreciate the internal qualities of people who look different, will we be so "look-ist" in our selections of friends and spouses?
31 for 21: Abortion
I am pro-choice. I don't believe that government belongs between the patient and the doctor. This is not because I think abortion is not problematic, but because I think that the dangers of prohibition are greater than those of legalization. As with drugs and alcohol, prohibition creates a black market, as well as worse quality control and legal recourse for victims. I remember when the pro-choice slogan was, "Abortion should be safe, legal and rare". Then that gradually morphed into "...safe, legal and funded." Can you imagine if the same logic was applied to drugs and alcohol? If tax money was used to fund pot-smoking college kids under the pretext that in some cases, medical marijuana is justified? Is abortion becoming any more rare?
As with medical marijuana, I believe that there are cases where abortion is justified. This decision should remain between the parents and the doctors. I believe that just as with other medical decisions, patients should be provided with full and accurate information about the nature of the procedure and the level of fetal development. This should NOT be an easy decision.
Around 90% of prenatal diagnoses of Down syndrome result in abortion. This is at a time that medical and educational advances are making unprecedented leaps in the prognosis of children born with Down syndrome. Instead of seeing these advances, however, most people are seeing fewer and fewer children with Down syndrome in their communities. As a result, we are left with 20-year-old notions of what the diagnosis means. Medical professionals, instead of encouraging parents to have their children with Down syndrome, reinforce these outdated notions and encourage aborting children with Down syndrome, whose potential if born is growing with every passing year.
I am reminded of Aldous Huxley's Brave New World, where the character "John Savage" finds out that in this new society, mosquitoes have been eliminated:
Seems that is what our society is doing with special needs. Rather than learning to work with the special challenges involved and grow as individuals and as a community, we seek to eliminate the challenges so we don't have to confront them. Now, certainly we want to promote good prenatal nutrition, avoid drug and alcohol use, etc. We don't want to induce problems! But when is a challenge intrinsically a "problem to be fixed" (e.g. avoiding Fetal Alcohol Syndrome) and when is it something that we should embrace? Is abortion an acceptable solution to birth defects, or is it a slippery slope to eliminating whole subsets of the population, depriving our whole society of this diversity?
As with medical marijuana, I believe that there are cases where abortion is justified. This decision should remain between the parents and the doctors. I believe that just as with other medical decisions, patients should be provided with full and accurate information about the nature of the procedure and the level of fetal development. This should NOT be an easy decision.
Around 90% of prenatal diagnoses of Down syndrome result in abortion. This is at a time that medical and educational advances are making unprecedented leaps in the prognosis of children born with Down syndrome. Instead of seeing these advances, however, most people are seeing fewer and fewer children with Down syndrome in their communities. As a result, we are left with 20-year-old notions of what the diagnosis means. Medical professionals, instead of encouraging parents to have their children with Down syndrome, reinforce these outdated notions and encourage aborting children with Down syndrome, whose potential if born is growing with every passing year.
I am reminded of Aldous Huxley's Brave New World, where the character "John Savage" finds out that in this new society, mosquitoes have been eliminated:
“The Savage nodded, frowning. "You got rid of them. Yes, that's just like you. Getting rid of everything unpleasant instead of learning to put up with it. Whether 'tis better in the mind to suffer the slings and arrows or outrageous fortune, or to take arms against a sea of troubles and by opposing end them...But you don't do either. Neither suffer nor oppose. You just abolish the slings and arrows. It's too easy."
Seems that is what our society is doing with special needs. Rather than learning to work with the special challenges involved and grow as individuals and as a community, we seek to eliminate the challenges so we don't have to confront them. Now, certainly we want to promote good prenatal nutrition, avoid drug and alcohol use, etc. We don't want to induce problems! But when is a challenge intrinsically a "problem to be fixed" (e.g. avoiding Fetal Alcohol Syndrome) and when is it something that we should embrace? Is abortion an acceptable solution to birth defects, or is it a slippery slope to eliminating whole subsets of the population, depriving our whole society of this diversity?
Sunday, October 7, 2012
31 for 21: Buddy Walk 2012 Pictures!
Wow, what a day! My little ones were real troopers, and walked about half of the 3-mile walk before settling in to their strollers and falling asleep for their naps. (Sorry, no pics of cute sleeping boys). We were near the end of the march. Apparently around 3000 people attended!
Of course, the first thing we did when we got there was get our autographed photos of Lauren Potter (Becky from Glee):
We also got to hear her talk, and she was absolutely delightful! She also received an award from an appreciative supporter:
There were other performers as well, and lots and lots of cute kids everywhere!
Thank you to everyone who supported us!
Of course, the first thing we did when we got there was get our autographed photos of Lauren Potter (Becky from Glee):
We also got to hear her talk, and she was absolutely delightful! She also received an award from an appreciative supporter:
There were other performers as well, and lots and lots of cute kids everywhere!
Thank you to everyone who supported us!
Saturday, October 6, 2012
31 for 21: Disability?
A quote about disabilities from a mom of 2 (neither one adopted), one with Cerebral Palsy and one with Down syndrome:
Buddy Walk tomorrow! Please sponsor us if you haven't yet.
"The thing is, no one is perfect – we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can’t hide their weaknesses like the rest of us."
Buddy Walk tomorrow! Please sponsor us if you haven't yet.
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