Anderson Woods Camp

Mary is convinced that she just spent the best two weeks of her life. She returned yesterday from Anderson Woods Camp, a jewel of a camp for the special needs population. It is located in southern Indiana,

Honestly, I’m surprised at myself that I would trust any camp anywhere to be a good, positive, wholesome, and godly influence on my daughter. I sent three teens to a church camp a few years ago and had a bad experience. Why would I send a special needs daughter off to camp when I am not there to protect her??? I would never have considered it if I hadn’t received a phone call a year ago in the spring from Judy Colby who, with her husband, runs Anderson Woods. Judy was setting up training for her summer staff, and wanted a speaker to give them some in depth training about Down Syndrome. She asked me to come and present some training.

I did. And I met some amazing people. The Colbys have recruited a skilled group of staff who come back year after year. These are typically students majoring in medical or educational related fields. The director for the last two years is a medical student. They volunteer and if they receive pay it is in the form of a scholarship. They have a high ratio– for example, last week there were only ten campers and yet seven staff, plus the Colbys. Through some miracle of financing (no government grants, though) they are able to run this camp for a fee of only $100 per camper per week.

After the lecture, my family shared lunch with the camp staff. The menu contained salad greens picked that morning from the camp garden, and strawberry jam canned the previous summer by the campers who had picked the strawberries. The meal was served family style, with a routine that showed a camp emphasis on manners. Immediately after the meal the staff followed their usual practice of everybody pitching in to clear the tables and wash the dishes.

Anderson Woods Camp is at the Colby farm. Regular activities include having the campers care for the animals–a highlight for Mary. There are horses, cows, a goat, sheep, a peacock, a donkey, chickens, and assorted dogs, puppies, cats and kittens. Click to enlarge the photo.

There is something profoundly normal and wholesome about the camp routine. Gardening. Preparing the produce for canning or freezing. Picking food for dinner. Swimming in the creek. Fishing. Feeding the animals. Washing the dishes.

Mary spent two weeks at camp this year. Last week when I picked her up, she cried. She didn’t want to leave. I asked Mary to give me a tour and show me all the places where they had done their fun things. Nope. Nothing doing. “Mom,” she explained through tears, “those are my places.”

So yesterday, when I picked her up after the second week, I gave her a camera and offered to wait while she hiked to her favorite places and took pictures. Below are some of her pics.

Anderson Woods is not just a children’s camp. They run three weeks for youth aged eight to eighteen, and then five weeks for adults. Here is their website.

Click for more photos.

Why Does God Allow This to Happen?

In the comments of God, Do You Care?, from the Inspiration section of this site, Rose wrote yesterday,

Did l make a mistake to confess in a God of impossibilities.l am in pain bcoz of what am going thro, my baby has to use tube to feed,need oxygen ,am in a hard situation and in too much pain to think God allowed this to happen to me.

Rose, I hope you are coming back to check for replies, because there have been an number of excellent responses. Here is a sample:

From Donna:

Less than four years ago I was in your shoes. I believed God would never give me a child with DS because I trusted Him and submitted my womb/family planning to Him. He would only give me “good gifts”. When my son was born, I was in shock/confusion/despair.

Little did I know what was in store for me. I soon began to see that God HAD given me his best gift! Through this child, my (and my entire family’s) mind/spirit has been transformed and renewed. Joel is a beautiful, gifted person! He has a capacity for love and faith that I can only hope for.

Tina begins this way:

Rose, I can only imagine how hard this must be for you. How sad that the world has led us to believe that it is a curse for any child to have DS; that they themselves are inferior as is their quality of life. But God sees what man cannot.

Ali wants to write but keeps getting interrupted:

But I want to encourage you. In between writing to you my four year old son with Down’s keeps beckoning me to him to pick him up and waltz together while he smiles and laughs. He is sooooo cute and such a joy and gift.

Beth remembers similar feelings:

I remember those emotions and feelings even though it was almost four years ago. I had one blood test which indicated a possiblity but my husband and I thought “God won’t do this to us.” After all we were sacrificing and serving Him overseas. No, rather he allowed, Miss K to be born into our family.

In our case, he told us, watch how I am going to work in her life.

There’s more in the comments of God, Do You Care? Priscilla just posted as well.

God is good. All the time.

How Not to Be a Therapy Mom

This morning I spoke at a mother/daughter tea sponsored by SMILE on Down syndrome, our local DS support group. This is the prepared text of that speech.

Introduction

I titled this speech “How not to be a therapy mom” because we live in a time of enormous therapy opportunities for our children. Even when we aren’t hiring the hundreds of therapists available to us, we already know enough of what we ought to be doing to keep us busy for years… and to keep us full of guilt for not doing it all.

Therapy– teaching, training, shaping — can take over our lives, our families, and our child. But we are more than therapists. We are mothers. Of all the people in the world, we are the ones best equipped to have that heart to heart, emotional connection with our child.

The biggest handicap that an adult with Down syndrome may have is not if he can’t add and subtract and read, but if he can’t interact with people.

According to Dr. Jim. MacDonald, a specialist in communication at Ohio State, children with DS interact with fewer people than other children of similar age and developmental levels. When they do have someone interacting with them, the children with DS interact on fewer activities. The interactions are shorter than that of other children. And they happen less frequently.

Our children already have so much to overcome to become communicating people, but on top of that, the people around them are not engaging in communication with them. People with DS then grow up without the social skills to interact in society.

We mothers can change that for our children. We have built into us a natural ability to reach the heart of our child and teach them social communication.

We need to change our thinking from being therapy moms, to being communicating partners with our children.

This morning we’ll see that becoming communicating partners is 1) natural, it is 2) effective and it is 3) the only way our children will become engaging social people.

Finding Playmates for our Children

We’ve been having a discussion on the ES email list about how to find young friends for our children, many of whom are already included in mainstream classrooms. One mother wrote that the children in their neighborhood just didn’t want to be his playmate.

Sharon wrote this response:

Another thing I did when Alina was in full inclusion Kindergarten was start a monthly play group with her kindergarten friends. Prior to this invitation, I made a book about my daughter modified from the book Hi, I’m Ben… and I’ve Got a Secret. It had about t10-12 pages and you add your child’s pictures. [download .doc file here]

Then I made about 10 copies of my own book and had them bound. It was very expensive but worth it, as I used colored pictures. The book went home with every kid in Kindergarten along with a letter telling everyone about my daughter with an ending statement “this is a great opportunity for your child without a disability to learn that some people can be a bit different, but that differences needn’t be feared, and you can still be friends”. [The letter document is here.]

SO anyway after every kid in her full inclusion Kindergarten read the book I asked the teacher to help me pick 5 nice kids. I invited these kids and then I held CRAZY monthly meetings at my house. We called it the Buddy Club. When others in our neighborhood saw my daughter with typical kids it made them want to get in on it too! She is now in Junior High Full inclusion with the exception of SDC math and Language Arts. Some of these initial friends are still her friends. Although I must say we do not have monthly meetings anymore, but I do hold an annual Christmas sleep over party with 10 girls and a few get togethers for bowling, Boomers, etc. a year with 1-2 of these friends; I must admit though the friendships are slightly different now. They love [my daughter] but she cannot communicate like they do so their communication is limited. But like I said they love her and that was my intention in the beginning!

Sharon gives credit to Sandra McElwee for the idea.

Fascinating Stuff on Neurogenesis

For the last ten years or so, the cutting edge discussions that I’ve been part of on the various DS email lists have pertained to protecting existing brain cells in our kids, and stimulating them to build new connections and neural pathways. To this end, there has been much talk of oxidative stress, antioxidants, Omega-3 oils, nootropic drugs like Piracetam, and supplements (like Nutrivene-D) which feed the pathways to build neurotransmitters. There has also been much discussion of neurodevelopmental programs such as those written by NACD or ICAN or IAHP which so many parents have faithfully done, and which have benefitted many children, including my daughter.

I’m seeing the topic of the discussions changing. Sure we want to grow and protect existing neurons, but the cutting edge discussion now is about neurogenesis–building brand new brain cells.

At the Changing Minds Foundation, Dr. Teresa Cody and other parents are way out on the cutting edge of Down Syndrome interventions. It turns out that one of the neurotransmitters which is over-expressed in DS is GABA, which is like a red light for neurons. It tells them to stop firing. Here is an excerpt of CMF’s excellent explanation:

All efforts to date have been aimed at increasing the excitatory transmission. In Down syndrome the brain activity is low, and the person is mentally challenged; the obvious answer is to increase the excitatory activity. But, the work at Stanford says it the other side of the system that needs to be addressed reduce the inhibitory activity.

The researchers at Stanford have demonstrated that an excess of inhibitory signals is the problem. In other words, there are too many red lights in the system and making the green lights greener doesn’t help, we have to turn off some of the red lights.

While the researchers at Stanford work to develop a drug to turn down GABA, there is an easily available herb which has just that effect. Gingko Biloba. Gingko shuts off some of the stop lights in our brains. There is much more at the link above.

Lots of the kids on the ES email list are now using Gingko, and I am hearing anecdotal reports of improvements in their learning ability. The CMF has some impressive video evidence of improvements in their kids.

But, this post hasn’t been about neurogenesis, yet. More from the Changing Minds Foundation:

A second theory is in the works; that is that neurogenesis (grow new neurons) is possible with an available drug, Prozac. Dr Sarah Clarke, at The University of Maryland School of Medicine led an investigation where they reversed the degeneration in the Down syndrome mouse model. After 24 days of Prozac (generic is fluoxetine), the Down syndrome mouse had doubled his neuron count to a normal level.

Wow! 24 days on Prozac and double the number of brain cells! That is enough to make this drug adverse mom sit up and take notice. Dr. Cody and others have combined this info with the Gingko info and developed a protocol for, well, changing the minds of their kids. Again, you really need to look at the video evidence of Neal Cody.

But Prozac? I’m thinking about this, and gathering information… but Prozac? Still, there has been discussion of Prozac for years on the DS lists. Years ago some kids were on Prozac for other reasons (constipation, low serotonin resulting in low gut motility), and their parents reported increased speech and language resulting from it. However, I am not aware of any children with DS who were on Prozac long term. But Prozac is one of those drugs that sets warning bells ringing in my mind. I’m still thinking about it, gathering info, and closely watching the reports coming in from parents who are trying this protocol.

Then today I listened to a podcast on Exercise and the Brain, with Ginger Campbell and John Ratey. Fascinating stuff. Thanks to DSInfoExchange for the link. Both CMF and Dr. Ratey are talking about BDNF, or Brain Derived Neurotropic Factor. It is a protein that acts to encourage new neurons to grow and differentiate. According to John Ratey, exercise produces BDNF, and in levels comparable to what is produced by taking Prozac.

Dr. Campbell points to this explanation of BDNF which will be helpful to parents who are just starting to muddle through the alphabet soup of these brain chemicals.

Well, rats. I hate exercise. However, Mary loves it. We joined Curves together last year, and went regularly for about 8 months. Mary will often ask me to take her. When I don’t, she asks for permission to go for a run, or she will find some big, energetic yard work to do.

The whole exercise/neurogenesis thing does make sense. As one parent on the ES list commented today, “I think that was one reason that Karen Gaffney has done so well. Her father relentlessly took time and effort to get her swimming. I do not believe that she took any vitamins.”

Processing

Four more pages from the previous site have been restored here.  They are listed under the Development tab above.  They are:

Auditory Sequential Processing Skills, or Digit Spans
Excerpt: Improved digit spans are a key to improving the functional intelligence. The terms “sequential processing,” “sequencing,” and “digit spans” are all referring to the same mental ability. The excerpts here are from the Einstein Syndrome list as parents of children with Down syndrome come to grips with this concept.

Auditory and Visual Digit Spans
Excerpt: How well we learn is a direct reflection of how well we receive, process, store and utilize information. Many children and adults are attempting to cope with unidentified processing inefficiencies. If identified with the simple techniques of testing auditory and visual digit spans, these inefficiencies can then be eliminated through the utilization of some very simple procedures.

Identifying Children with Low Processing
Excerpt: Other symptoms that occur related to short-term memory/low processing include the following: difficulty following through on instructions from others, inability to remain in one’s seat, easily distracted, difficulty waiting for ones’ turn in game situations, problems with sustaining attention or shifting attention from task to task, difficulty playing quietly, and losing things necessary for task completion. Children with low processing can be identified by using a simple technique.

Neurodevelopmental Approach
Excerpt: If you try to teach a skill by repetition, and the sequence is too long, your kids will not learn it. When we tried the digit spans, not only did we not remember the last number, but we forgot most of the first part too. This is what happens when the sequence is too long— the brain totally goes on strike and drops all the information. It does not help to try to teach this 300 times. It will be dropped every time, and it is as if you never taught it at all.

Tell Us about the Blessings As Well

As she tenderly expects the birth of her second child, Amy Julia Becker contemplates the 26 months she has had with her first baby, and the joy and surprises that came with Penny. Becker, like most DS mothers, was only given negative information about Trisomy 21 when Penny was diagnosed.

I wish that “evidence-based standards of care” included the fact that the life expectancy of people with Down syndrome has doubled in the past twenty-five years, or that the average IQ of a person with Down syndrome has doubled over the course of the twentieth century, or that many physical “defects” can be corrected relatively easily because of advances in medical care.

She goes on to mention the joys and triumphs:

I wish it included not only a list of all the medical problems she could face, but also the joy she could bring and the abilities she could have. I wish it included the stories I learned many months after she was born, stories about kids and adults with Down syndrome who played on Varsity teams in high school, competed and won national art competitions, swam across Lake Tahoe.

This is similar to my own experience. Almost every mother I talk to is surprised by the joy that her child has brought to her life. There is almost nothing in the standard DS literature provided by OB/GYNS which anticipates this life-changing joy. Why don’t physicians give this information to parents? Instead, being informed in a post-natal diagnosis is more like this:

After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”

The only difference in the prenatal diagnosis is the insistence on immediately scheduling the presumed abortion. The result of this barrage of negative information? The vast majority of women who are carrying a baby with Down syndrome decide to abort. No woman really wants to kill her baby, but women abort because they don’t believe they have a choice. The alternative of a “ruined life” is too terrible to contemplate.

This petition relates to the issue as well. I have been unwilling to sign the petition because it tasks the NDSS and the NDSC with developing education programs for positive prenatal diagnoses; I have yet to hear a clear statement from either of the national DS organizations deploring abortion of babies with Trisomy 21. I don’t trust them on this issue.

What Alternative Therapies Are Working for You?

Yesterday I received a phone call from a mom on a mission. She wants to gather information about alternative therapies which are used in the DS community. Here is her subsequent email to the ES email list:

Attention All Trailblazing Parents: Here is an opportunity to impact
cutting edge research!

Intro
My name is Edie Howard, and I am conducting a survey for Dr. Mobley,
Founder and Director of The Center for Research and Treatment of Down
Syndrome at Stanford University, to learn what therapies and supplements
are working to overcome the challenges presented by Down syndrome. The
question is simple - “What is working?” We will be looking for clusters
of similar initiatives resulting in similar outcomes. If those clusters
do form, then further analysis will be done. If we see trends which
could be helpful, we will also make a report available to parents.

Request
We need your HELP please. We need to compile a list of every single
therapy and supplement parents have used. Please email me what you have
done or are doing with your child in terms of therapies, treatments,
supplements, you name it - we want to know about it. I owe Dr. Mobley
this information by April 14th, so I would appreciate your input by
April 9th. Even if you cannot remember everything, that is OK - please
just email me that which you do remember.

Next Steps
The next steps will be as follows: 1) Design initial survey instrument,
2) Test the survey via phone interviews on 5 individuals then 10 then
50, 3) After 50 surveys are completed the final survey instrument will
be written, 4) Conduct 2,000+ surveys. The final survey may or may not
be phone based. We will also explore an Internet based information
gathering system as well. If you would be willing to be a guinea pig
for a phone survey, please indicate so in your email and provide me your
phone number. Your input and time would be very helpful and
appreciated!

Background - FYI
I proposed to Dr. Mobley in August at the NDSC convention a
complementary therapy research project. The research I proposed was too
broad. He, instead, came up with the idea to simply survey parents to
learn what is working. Pharmaceutical companies go through a similar
process when researching chemical compounds to find breakthrough
products. Surveying patient groups, however, breaks new ground in the
research world. Usually scientists do not communicate with the
“end-user”. (Isn’t that amazing? I did not realize this until visiting
with him. From my non-researcher’s perspective, it appears the
scientists have made a tremendous error in oversight to ignore such a
rich source of leads.)

I sure hope you will take a few minutes to email me your input. I
cannot compile this list without the help of hundreds of trailblazing
parents. Let’s be heard!!

Thanks,
Edie Howard

As we talked, Edie spoke about the children with DS who enter school at appropriate age with no cognitive delays. They aren’t common, but they are out there. No one has ever done the research to learn what those parents did differently, if anything, in order to find out what is working.

No, I need to rewrite that… No prestigious scientist has published research about what those parents did differently. I would say that the neurodevelopmentalists at NACD and ICAN have plenty of research that they hold within their groups, and they have data from hundreds of families about what is working. There are probably other therapists and educators who have gathered data. But no one with research clout has gathered it and processed it in a statistically significant manner.

That is where you can help. The comments on this post are a place to list the therapies which you use that you believe are successful. It will help Edie if you give a brief description of that therapy, or a link to more information about it.

If you are on a DS email list, it would be helpful if you would send a post to the list with a link to this post, and ask people to comment about which therapies should be included in the survey.

I think Edie is on to something.

Guess Who’s Cooking Our Dinner?

My daughter, Mary, is becoming quite the accomplished cook. Last week I was gone and left the family in the care of Grace, my 20 year old daughter. According to Grace’s report, Mary kept the family fed all week. Mary is 15 years old, and she has Trisomy 21. The crowd she was cooking for included her eight brothers and sisters, plus my husband.

For example, one evening Grace asked Mary to find something for dinner. So, Mary went to the freezer and decided on breaded fish. She read the instructions, set the oven, and put the fish in for the required time. Meanwhile she decided to make a fruit salad. She sliced and cored apples, and put those in a bowl with some frozen berries. Then she cut up lettuce, carrots, and tomatoes for a vegetable salad. She set the table, then took the fish out of the oven, cooked perfectly. Finally, she went around the house and asked each family member to come to dinner.

One of her favorite meals to prepare is tuna salad. A couple weeks ago she noticed that it was 6:00 and I was doing nothing in the way of dinner preparation. She asked me if I was making dinner. When I said no, she went to the kitchen. I could hear her throaty hum as she worked. First she filled a pot with water and began to boil some eggs. Then she opened a large (industrial strength size) can of tuna, drained it and put it in a large bowl. She diced some celery; measured out a couple generous scoops of pickle relish. While she waited for the eggs, she sliced up a half dozen apples for a side dish. She put some tortilla chips into a bowl to serve with the tuna salad. When the eggs were done she poured off the water, ran cold water over them to cool, peeled and chopped them. She added mayonnaise to the tuna, and mixed it up. Finally she set the table, put the food on, and went to each family member to invite us to come to dinner.

Mary has been cooking for years. My standard for independent stove use is that my children must be tall enough to be able to see into the pot on the stove as they stir. (Update:  Stove use also requires height sufficient to reach the knobs back behind the hot burners.)  My standard for oven use is that the child is tall enough to be able to lean over to lift a hot item off the shelves without danger of losing her balance.

There have been times when the meals have been interesting. A couple months ago, Mary made up a salad casserole. She combined lettuce, diced raw carrots, diced raw tomato in a casserole. She added some canned tuna, sprinkled the top with shredded cheese, and baked her casserole until the cheese was melted.

I think it hurt her feelings when nobody wanted to eat that dinner.

But you see, the reason that Mary is so accomplished in the kitchen is that we allow her to make mistakes like this. Might she burn herself? Yes. She has. And so have I. That burn taught me to use a hot pad, just as it taught her.

Expectations. If you don’t expect her to be able to accomplish it, you won’t be likely to teach it.

The “poop” on poop

On every DS forum I’ve been in, the topic eventually comes up. What to do about poop. Or more specifically, what to do about not pooping. Constipation is one of those parts of the “syndrome” that causes considerable anguish for both the person dealing with it and mom.

Causes of constipation seem to group into three areas.

1) What we put into the gut. This includes water (not enough), fiber (not enough), and to much of a host of difficult to digest foods (including milk and wheat).

2) Problems with gut dysbiosis. According to Natasha Campbell McBride and many other experts it works like this: Start with poor indroduction of gut flora from birth, then administer antibiotics to kill all the flora, leaving no good bacteria, the eat the modern diet devoid of cultured foods. Vaccines further damage the gut wall. All this results in gut walls stripped of microvilli, which means that enzyme production for digestion is slowed or stopped. The gut gets plugged up with putrifying food and bad bacteria. This has been discussed here and here.

3) The above problems of intake and gut dysbiosis are not confined to DS but abound in the normal population. However, in DS there is a special problem: Problems with gut motility: Serotonin is the neurotransmitter responsible for peristalsis (movement of food in the gut), and serotonin has been found to be low in Trisomy 21. The motility is also hampered by late crawling/walking and general sedentary lives of many with DS.

All this combines to present a problem that moms of kids with DS have put their mind to solving. Constipation in Down Syndrome is a recently edited and reloaded page on this site which collects solutions and discussion from posts on the ES email list. And not surprisingly, the solutions to constipation involve changing the diet, healing the gut, and improving gut motility.