Einstein Syndrome: Down Syndrome with a Positive Attitude

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.

Denial

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.

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