Sara Rosenfeld-Johnson has recorded her presentation Early Intervention: Oral Placement Therapy for Children with Down Syndrome. Click the photo to begin streaming the video.
If you have a young child with DS, then do yourself and your child a favor and become familiar with SRJ’s work before you child has all the wrong habits.
For discussion of bio-medical treatments for the dual diagnosis of Down syndrome and autism, join the Yahoo group DSAofLouisville.
Update: Here is the group description:
I’d like to invite you to join a newly active group dedicated to the dual diagnosis of DS and Autism. We’re hoping to provide an openminded discussion of biomedical, alternative and complementary medicine and treatments. This would include treatments for Down Syndrome as well as Autism. Of course traditional allopathic medicine is considered on topic and crucial for our often medically compromised children as well. Perhaps you have a child with only one diagnosis but are still interested in learning from and sharing with us. Perhaps you are a professional or family relative who cares about these issues…everything from gfcf diets and TNI to HBOT and RDI.
Plus, Super Down Syndrome has collected resources for the DS/Autism dual diagnosis.
Mothers of babies with Down syndrome are fighters. Just to bring our children to birth, we had to fight against the prevailing pressure to abort. Once our babies are born the fights continue. We fight the heart defects. We fight the slow weight gain. We fight the respiratory infections, and the gut dysbiosis and the cognitive impairment. On top of all the battles against physical maladies, we battle the attitudes of the world and demand respect for our children.
In this penultimate article on the top fifteen things I want to tell the new parents of babies with Down syndrome, I propose that there is one more battle to fight. That battle is in yourself, and it is the fight to maintain high expectations for your child instead of becoming “realistic” about what he can become. This battle begins for parents as soon as we know the diagnosis. It continues, if my experience is any indication, for at least seventeen and a half years.
When my daughter was just three weeks old, I had an encounter with a social worker who noticed my resistant attitude toward Mary’s expected future. By then I’d read the books for new parents. They spent many pages explaining the limited future in store for my daughter. I had no intention of giving in to that future without a fight. The social worker wrote up a scathing assessment of my psychological state which she sent to Mary’s doctor. She wrote to him that I was in “denial.”
After a year and a half of watching parents acquiesce to the standards set by others for their children, I wrote this, “I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.”
Little did I know then how pervasive low expectations are, and how consistently I’d have to ward against them. In this article, I’ll take a look at the pervasive nature of low expectations, and then at what high expectations are and how to stay in the battle for the long haul.
Low expectations are pervasive
The assumptions made by your therapists and medical professionals will be based on what is average in their practices. What is average in their practices is a very low level of health and accomplishment for their older patients with DS. If all the children with DS that they know are kids with tongue protrusion, then they will think it is normal and totally acceptable for your son to have a protruding tongue. If all the kids they know have constant respiratory infections, sluggish thyroids, and constipation, then they may look askance at you if you come in expecting to do something about all this. If you are not on your guard, their low expectations will color your own.
Those Down Syndrome Growth Charts
Let’s look at one example of low expectations in the pediatrician’s office. Your pediatrician may have a nifty Down syndrome growth chart on which to plot your baby’s growth. Don’t settle for this. It is fine to know where your son stacks up against others with DS, but you should also monitor where he stacks up against normal development.
Years ago, a mom wrote in to the Einstein-Syndrome email list, concerned about her son’s thyroid function, and pointed to hypothyroid symptoms. Her doctor argued out that the child did, in fact, grow during the last year. Here is Ginger Houston-Ludlam’s response to that mom.
So, he grew this year. Did he grow normally? Or did he grow at the stunted rate of the Down Syndrome growth chart, which is likely developed using a bunch of hypothyroid kids? This is the goofy logic that we have to deal with. Here’s an analogy. We all know that the end stages of cancer often are accompanied by dramatic loss of weight. So, do we have a special cancer weight chart? If I have cancer and weigh more than 85 pounds, does this mean I’m overweight? Of course not. It is a negative outcome of a disease process. Why should growth in Down Syndrome be treated any differently?
Ginger’s argument is that the low expectations resulting from the DS growth chart was changing the treatment offered to this child. He was supposed to be short and stunted in growth! Since his symptoms matched what was common in DS, there was no reason, from the doctor’s perspective, to treat the underlying cause of the symptoms.
A Tale of Two Expectations
The fight against low expectations doesn’t just happen in the doctor’s office. The biggest fight is at home. You’ll see that in this email sent to me from another mom:
I was so saddened some time ago when I read on [a DS discussion forum] … about a man and his wife who were working in the garden and forgot the time. When they got in they were amazed to see that their 16-year-old son had (a) realized it was lunch time and (b) had made himself a sandwich.
They were amazed.
It was so obvious how little this boy had been allowed to be “normal” doing “normal” things when he obviously could.
In that family the parents were amazed that a 16-year-old figured out it was lunch time and made himself a sandwich. Who knows how long he had the ability? The parents had long ago, unknowingly, given in to low expectations.
On the day I received that email my then 15-year-old with Down syndrome was asked to make dinner for our family of eleven. That is all the direction she got. Oh, wait. I asked for hamburgers. Mary went to the freezer and got out the box of frozen patties. She hooked up the electric grill and started grilling the patties. She removed the buns from the freezer. She sliced a couple tomatoes and arranged them neatly on a platter with lettuce leaves. She got out the ketchup and mustard, plus the special hot mustard that my husband likes, and also the pickle relish. She thawed the buns in the microwave, sliced up several apples for a side dish, and filled a pitcher with filtered water. Finally, Mary set the table, put the food on the table and then called everyone to dinner.
It is work—hard work—to hold on to high expectations. In fact, getting Mary to that point of making dinner for our family meant that my husband and I needed spend years hanging on to a goal of independent function for our daughter, and those years were spent working against obstacle after obstacle to reach our goals.
High expectations are more than wishful thinking
High expectations means having a realistic understanding of the obstacles, realizing the work involved, and then rolling up your sleeves and getting to work.
When Mary was a baby, I did have a few goals and lots of airy hopes. One concrete goal was that I wanted my daughter to be able to read the Bible for herself, and not be dependent on her family for her knowledge of God. At that time, I was not aware of even one person with DS who had a reading level that allowed for reading and understanding of the language of the Bible. This was a high expectation indeed.
Understanding the obstacles. Let’s talk about having a realistic understanding of the obstacles. The titles in this series of the top fifteen things new parents should know reads like a list of the obstacles: Gene over-expression, vaccine reactions, behavior problems, speech and language problems, poor immune system, gut dysbiosis, ear and respiratory infections, slow thyroid. Yup, the obstacles faced by our kids are huge.
Realizing the work involved. The obstacles are not insurmountable. There is work involved, but step by step, you as the parent can overcome many of these obstacles. This series of fifteen articles was written to give you a path forward. Unfortunately, the path involves work.
When Mary was five months old her neurodevelopmentalist told me that the path to helping her would mean educating myself in biochemistry. It seemed hardly fair—I had five young children and plenty to do already. Biochemistry! Yes, if we are dealing with gene over-expression—and we are—then many solutions have biochemical foundations.
Mom and dad, there is no one else on the earth with the high goals and dreams that you have for your son. You will not be able to achieve those goals and expectations for your child by turning the education and medical decision making over to others, because those you delegate to are not likely to share your expectations.
Rolling up your sleeves and getting to work. We started working on the reading goal from early infancy. We worked on visual and auditory processing. We worked on vocabulary and symbol recognition and word recognition. We worked with Mary on a targeted neurodevelopmental program with intensive input, day after day, year after year. Meanwhile I learned what I could about the biochemistry of Down syndrome, and I did what I knew to do to support what her brain was trying to learn.
Then, one day when she was eight years old, she picked up her own Bible, chose a random verse in Psalms and started reading it. It was about lifting up our eyes to the hills from whence our help comes. She read it. Slowly. Haltingly. Missed some of the words. But she read it. Then she looked up and asked me what it meant. When I explained, she understood my answer.
I cried. That impossible goal! Yet, Mary had reached it at only eight years of age. Our goal hadn’t been just a wish. Mary accomplished it because of the hard work we had done together.
Today, Mary wants to learn to drive. This is her goal for her life. Obstacles? No kidding! The first big obstacle is the written test she needs to pass before she can get an Indiana Learner’s Permit. Indiana has published a Driver’s Handbook which distills driving law and practice into what, in my humble opinion, is a boring, too-technical, poorly written book. Mary needs to pass a test questioning the minute details from this book.
In order for her to realize this goal in her life, I’ll need to transform this handbook into a set of discrete facts that Mary can study, drill, and memorize. Then we need to study and review daily until she can answer every fact. Lot’s of people sell nifty flashcards with math or vocabulary, but nobody sells handy study tools for the Indiana Driver’s Handbook. For Mary to achieve this goal, I need to roll up my sleeves and get to work.
Keep the Important Stuff Important
This is the section of this article in which I take back everything I’ve just said above. You see, part of our internal battle for academic and developmental goals is against higher, more important goals. I can fight the creeping low expectations, but sometimes I find myself fighting the wrong battle.
In your work against those obstacles presented by Trisomy 21, remember that your son is more than the sum total of his achievements. When Mary was a newborn I met a family with a son (whom I’ll call Matthew) with Down Syndrome. Matthew was ten at that time. His mom told me that the typical training was to emphasize academics first, life-skills second and character third. She said that with Matthew they reversed that to emphasize character first, life-skills second, and academics third. I had contact again with her five years later when she described an event in which Matthew had been totally selfless and focusing on another’s needs. I wondered then, as I worked with my often resentful five-year-old to teach her reading, if I was getting things backward.
I think this mom had her priorities right. Focus on character first. And what is the potential for character for a person with Down syndrome? Exactly the same as for a normal person. We either walk with God—or we don’t. We obey God—or we don’t. God never tells us to learn our times tables or to memorize the state capitals. But He does tell us to love mercy, do justice and to walk humbly with Him. Those are what I should be working on with all my children. If I get the high achievements, yet miss the character, I’ll have failed with Mary.
Discouragement may come from having the wrong goals. If my goal is to have Mary in college at eighteen, then I may well get discouraged. But if my goal is to be the best mother for her, and to train her the way God wants me to, then it hardly matters what others say about her potential. When you are discouraged, as you will be at times, step back and evaluate your goals. Are they goals that God has given you? Is this what God wants from your child? Adjust your goals and priorities and you can continue in the battle.
Reaching the Balance
Having high expectations means that you are in this for the long haul. Low expectations creep in when you get tired. You’ll have to pace yourself.
As you pace yourself, accepting coping techniques for your son will look appealing. Therapists love, love, love to teach coping skills. I think that it gives a sense of accomplishment, because the child does learn them. But, resist settling for coping techniques in the early years of childhood. Those coping techniques bypass developmental steps that are foundational for later skills. But don’t resist so hard that you lose your strength to continue the battle.
Having high expectations must be balanced with complete love and acceptance for our children right where they are. It is hardly fair or loving to ask our children to perform more than they are capable of doing. Sometimes the only loving response to my over-taxed daughter is to remove the stressors and just let her enjoy being herself. It doesn’t mean that we reward misbehavior, but we become a hedge between our child and the world which is asking too much.
Having high expectations means having a realistic understanding of the nature of Trisomy 21, realizing the work needed to reach our goals, and then, step by step, moving forward. Pace yourself for a long fight or you’ll burn out. Reevaluate your goals as you gain a greater understanding of God’s plan for your son. And keep those goals balanced with love and acceptance for him just the way he is.
You are a fighter, mom. Stay strong. May the God of peace be with you.
This post is #2 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.
Recent discussions are a good occasion for me to write this post, which has been on my mind and in scribbled notes on my desk for more than a year. Those discussions surround Chief of Staff Rahm Emanuel’s decision to describe his opponents in a strategy session as “f—— retarded.” Denunciations from the Special Olympics and other organizations were ignored until days ago, when Sarah Palin weighed in with her rebuke. He has subsequently apologized.
Even among conservatives and others who oppose Rahm Emanuel, the consensus is that Sarah Palin’s facebook post was a political maneuver–whether foolish or inspired–and nothing more. According to Ann Althouse, “This is a good place for Palin to posture, but, seriously, I think that anyone who takes this trumped-up offense seriously is… pretty silly.”
I do not believe this is a trumped-up offense or silly. The outrage Sarah Palin expressed was just what I have felt when Al Gore talked about the “extra-chromosome right wing,” and when a cruel but anonymous person coined, “even if you win, you’re still retarded.” I’m not a stickler for people-first language, and I don’t need “Congressional legislation that would remove the word [retarded] from federal law.”
But Gov. Palin’s words ring true to me, because they could easily have been mine. I, too, am a (more…)
Qadoshyah at Got Down Syndrome is ruminating about the birth of her brother five years ago. It is a good and contented as ruminating should be. She writes:
So, today we will sing “Ha day” (Happy birthday), as Osiyyah says, to him & his sister. And, today, as every other day, we are very thankful God has put Osiyyah in our lives.
Ha day to you, Osiyyah!
The year my daughter, Mary, was born was the year that the old paradigm of Down syndrome started to crack. Prior to that year, every one just knew that Trisomy 21 was a static condition that didn’t change and couldn’t be treated. But in that year a parent got on the new thing called the Internet and started looking at what was known about a few of the genes on Chromosome 21. Based on what she learned, she developed a protocol to treat her daughter. She realized that her baby daughter was not yet retarded, and so she looked for what she could do to stop the negative progression.
To understand what that mom did, imagine you are making pancakes with a recipe that comes in twos. The recipe calls for:
2 baking powders
Now, imagine that someone comes along and dumps in an extra cup of flour. You no longer have pancakes, you have muffins!
Can your batter be fixed? Well, yes, you can add in some extra liquid. It won’t be the same as your original recipe for pancakes, but it will still be good.
The human chromosomes are a recipe that comes in twos. Trisomy 21 comes along and dumps in a bunch of extra metabolites. Can it be fixed? Well, we can’t make it the same as the original recipe, but we can adjust some other ingredients to get closer to the original plan.
“Gene over-expression” means that because a particular gene has three copies instead of two, the cells make too much of the particular protein coded for on that gene.
It’s a New World
Unless you acknowledge the fact of gene over-expression, you will ignore the most potent tools to treat the cacophony of metabolic errors that is Trisomy 21. Understanding gene over-expression gives us a focus for our research, and it provides suggestions for supplemental nutrients and drugs to ameliorate the imbalance.
Those suggestions are coming rapidly now because of three major developments in the last several years. First, parents themselves are (more…)
This is the post which is going to make me unpopular. Vaccines are so doggone controversial, yet so much a part of the medical orthodoxy that questioning them is tantamount to heresy. But I gotta say this to new parents of children with Down syndrome:
You simply must research the vaccine controversy for yourself. You just must.
The statistics of incidence of autism in the general population are bad and getting worse. But in Down syndrome the statistics are terrible. Various estimates range from 1:10 to 1: 5. Something serious is going on if one out of every ten children with Down syndrome also is diagnosed with autism.
It didn’t used to be.
On the Einstein-syndrome email list the ratio holds true: about one in ten. And from the stories and struggles told by these parents, the DS/autism dual diagnosis is just heartbreaking. Down syndrome alone is a walk in the park compared to dealing with autism piled on top.
If this health issue is so prevalent, then we parents must do all we can do to prevent it from happening in our own children. Once again, Professor Parent PhD must get on the Internet and research a difficult topic.
If you do not know the best theories about the causes of autism then you do not know how to protect your child. Let me say that again: If you do not know the best theories about the causes of autism then you do not know how to protect your child. Period. If you do not know the risk factors for autism, then you do not know how to minimize the risks in your own little guy.
As you research, be sure to read about gut dysbiosis, contraindications for the various vaccines, the safety studies which have been done on vaccines, particularly the safety studies done in medically complicated populations, and alternate vaccine schedules.
As you research you’ll begin to understand the social concept of herd immunity, and the expected collateral damage to a percentage of the herd. Herd immunity is a great social concept for policy makers. But for me as a parent, it is my job to keep my own high-risk child from becoming the collateral damage. The first step to do that is to research the vaccine controversy for myself and then act on what I learn.
If you have researched this topic and have relevant links for other parents to look at, both pro and con, please post them in the comments. Please write a sentence or two on each link, why it is relevant and/or helpful. And limit your links to two per comment or WordPress’ spam filters quarantine your comment and I may not see it. You may post multiple comments if you have multiple relevant links.
This post is #4 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.
The most effective thing my husband and I did when our daughter was a baby was to enroll her in a neurodevelopmental (ND) program in her first months of life. Prior to this, we investigated the options offered by our state, and we did not like them.
Early Intervention was offered. It involved either enrolling my baby in a day care program where therapists would work with her for a few hours a week. Or, it involved having therapists into my home where they would work with my baby. In both of these options someone else worked with my baby. The work they would do was just a few hours a week at best. And this left me with the whole rest of Mary’s life and not knowing what to do.
My overwhelming impression of the Early Intervention program was their pervasive low expectations. What I was shown were a bunch of nifty-cool coping techniques that they would teach my daughter. Without even trying to see if she could achieve normal function, they already relegated her to a life of second best.
Then I called the staff at NACD, an organization which promotes a neurodevelopmental (ND) approach. What a breath of fresh air! The lady I talked to said, “We have our DS kids reading at age three all the time.”* She was the first person I talked to in Mary’s first months who did not express sympathy. She had a positive attitude; she had a plan.
I was skeptical. So I called parent references. Over and over again I heard something like this, “They told me he would never [fill in the blank], but now, he is doing all that and [description of new skills never dreamed of].”
So we enrolled Mary. It was expensive. And because it was out of the mainstream we paid out-of-pocket. My advice to new parents is to spend the college fund now.
[Off-topic rant follows. Skip this paragraph if you are offended by rants. The most effective approaches we have used with our daughter over sixteen years have not been paid for by insurance or by government programs. I think there is a reason for this. Insurance-paid and government-paid interventions do not have to work to keep the paychecks coming. Therefore there is little incentive to adapt to the most effective methods. Actually there is a reverse incentive: if the kids graduate out of the program, the client base dries up. In the privately funded programs, the experts only get paid if the parents see continuing positive results. The incentives reward results instead of the status quo.]
Mary continued with NACD and then later with our same neurodevelopmentalist at the newly formed ICAN for at least ten years, and then sporadically since then.
The typical therapist looks at some subset of your child and checks to see if one of the techniques in her bag can be applied. If your child doesn’t progress, it is not the therapists’ fault in their opinion, it is your child’s fault. Not so with ND. The evaluator looks at your whole child. The evaluator brings the best of all the therapeutic branches, both mainstream and alternative, and chooses therapies to recommend from all areas of development (fine and gross motor, auditory/visual, tactility, oral, verbal, etc.). If your child doesn’t progress, it isn’t the child’s fault, it is the fault of the evaluator who hasn’t found the solution yet.
One big advantage of the ND approach is the network. The neurodevelopmentalist at ICAN (ND) is in touch with colleagues who have worked with thousands of kids the schools have given up on. Oh, the children may be still in the school, but the school no longer has pretensions of overcoming the learning challenges. The parents of the ND clientele are go-getters, researching and trying the most promising ideas. So, the ND evaluator has a pipeline of information of which new therapies work and which don’t.
For example, right now in the Down syndrome community there is a controversial new therapy using an easily prescribed drug. The therapy promises to stimulate growth of new brain cells. New therapies for DS are a dime a dozen and most are junk. But, because the ND’s are working with so many parents, they are getting breaking news of the efficacy and side-effects of this therapy. Clinical trials on this type of stuff cost millions, and for DS will probably never be done. But, families who are working within the ND network have the info.
The ND professional relays that information, both good and bad, to other families who can take it to their own pediatricians to evaluate and maybe try. Meanwhile the ND evaluator follows the kids developmentally, and provides testing and constantly updated developmental advice.
The neurodevelopmentalist works from a developmental profile which is the core of the ND approach. This profile looks at the natural development of the brain, the “very good” design, which starts with the collection of unconnected neurons at birth, and progresses to the highly connected and organized system of neurons we have at maturity. This means that the ND approach puts you right within that “very good” design. The sensory input that the brain receives naturally is what causes the neurons to organize and moves the normal brain through these developmental stages.
But sometimes something stops this normal, natural progression of neurological organization. It may be a birth injury. Or some chemical exposure, or some chromosomal defect. Whatever it is, it halts or distorts the natural development of the brain.
The organizations of ICAN and NACD tap in to 50 years of work using specific, targeted sensory input to overcome the blockages where development has stalled. At an ND evaluation, the evaluator would determine how far the neurological organization has gone for a child in each of the major developmental areas. For example, Kay Ness is the ND who comes to my area. She looks at everything from prenatal reflexes all the way to the advanced skills of the multi-lingual, manually-skilled marathon runner. Based on her extensive pre-evaluation questionnaire (with lots of questions about medical, developmental, and educational history), she will look for potential causes of those developmental blockages.
Then Kay would write an educational/developmental program for you to do at home. The program will target specific input for the next steps of brain development. You will be trained to do the program. It is likely that you will also receive recommendations to pursue with your pediatrician, (maybe suggested blood work, or a medical test), or a recommendation of a lifestyle or dietary change to investigate.
What ND offers is a way of looking at the whole child with hope. ND looks at the design of our brains, and works within that design. ND recognizes that the parents are the final experts on their own children, and will equip you with the tools to help your child.
*(Teaching preschoolers with DS to read is now accepted by innovative teachers and therapists. In 1992, when Mary was born, it was unheard of, except by rare educators who worked within the ND model.)
This post is part of a series begun here, the Top 15 Things New Parents should Know