Down Syndrome and Autism

If you are a socially awkward introvert like me, you too have experienced the trauma of the party where you only knew one person.

Think of that one year at your spouse's work's Christmas party, the year when two hundred people were milling about with stem glasses of wine and teensy paper plates with mini-quiches and meatballs. Your spouse left you for a second to discuss the January budget with the accountant who only comes in on Thursdays. But he did not introduce you to anyone, so you had nobody to talk to. Sure, the people around you were all nice, and you knew none of them were out to harm you. But standing there with your back against the window, clutching your wine glass for dear life, you knew you did not belong. You knew nobody cared whether you were there or not. It was another one of those events that were to be endured till your spouse would return and magically make you feel part of something again. Everyone else was laughing, comfortably walking about, brushing elbows, feeling welcome wherever they choose to stop to join a conversation.

Second scenario -- same party, someone walks up to talk to you. It's Joe's boss. He tries to be friendly, but you know nothing about him, except that he ruthlessly and without explanation fired Joe's cubicle mate Miranda last fall. You want to be kind, engaging, smiling, and positive -- for Joe's sake. Words fail you. 

Take these scenaria with their accompanying anxieties, and imagine that this was your day every day. That almost every encounter you had with another human would feature risks, rejections, misunderstandings, disappointed expectations. After a season, you quit trying. You prefer staying home with your favorite movie, Harry Potter 3, where every time you turn it on, there is Dobby slamming his head into Harry Potter's dresser drawer, and there is Harry, saving the day for Hog Warts. 

That may, to some extend be what life often feels like for a person with Down syndrome and autism. So much of the world makes little sense to start with. When you finally make sense of something, the world keeps changing, and it is that change, and the Downs-autistic person's inability to predict or stop the change that causes him either to check out, or to melt down.

When roughly 25%  or more of  any given day spins out of my control, my mood begins to be affected.  I'm talking mundane things like toilet overflows, a late fee shows up on my mortgage payment because the Bank web site did not work, my sitter for work suddenly fell through,  I was 30 minutes late to Ben's appointment because of traffic on I 270, etc. If that were every day, all the time, eventually, I would give up or melt down too.

Less questions, less talk, more quiet, more acceptance, no pressures ... would be nice for any of us when we are overwhelmed in a social setting.

Coping with Special Needs - One mom's journey

What absolutely broadsided me after becoming a special needs mom was dealing with other special needs parents. Doctors and nurses kindly connected me with a Down syndrome support group, and I went a time or two and fizzled.

Support Groups

No, I am not against support groups, and I have been supported by many wonderful people over my son’s 18 years, but I would say that there is no one way of dealing with this, and I would add that our differences in dealing with these stresses majorly divide parents of special needs, who to the rest of the world SEEM to have so much in common.

I was introduced to the Down syndrome community in Kalamazoo, Michigan first. My son has Down’s but that was the least of my problems. He also had a severe heart defect, cleft lip and palate, digestive issues, respiratory issues, etc. 

My real first support group consisted of parents --not with children with Down's-- but with severely ill children who might not make it. Most kids with Down’s have one or two medical issues that gets repaired, after which junior grows up on a Down’s growth chart, with a Down’s developmental schedule, he reads, he talks, he moves about, and he generally turns into a congenial, fairly easy-going fun kid. My son was near-comatose the first year, and then screamed the second. Theses parents had concerns about sitting and walking, I had concerns about survival. 

Ben spent four years being so critically ill, that he seemed like a minor miracle every time he turned the corner on the latest threat (bacterial, cardiac, pulmonary) and came through strong.  He is largely unintelligible today (though we do have communication devices and paper and pencil to clarify), and he shows traits of inflexible, rote, autistic-like behaviors, which result in quiet, inward-turning melt downs when his world becomes over-stimulating or too unpredictable for him. He has Down's, yes, but that is not the biggest issues in helping him cope with life productively.

Alone

But, even when I find, as I have, communities with kids who are in-one-aspect like Ben, we each walk this path alone. Our children do, and we do. But alone is OK. Alone can strengthen you.

Note – I am not knocking support groups or friends. I don’t know what I would do without folks who can relate to a particular struggle with a Medicaid refusal on needed equipment. What I am saying is that special needs and how we deal with the challenges is fundamentally related to our basic coping mechanisms, many of which we bring with us from our childhood homes. 

For example, when I was pregnant with Ben, I was determined not to abort, though we knew from 17 weeks that he had significant heart issues, clefts, and Down’s. I went to appointments at University of Michigan Hospitals, and time and again, a doctor would encourage me to consider abortion. I was mildly annoyed and found the suggestions inappropriate, but I have always been a somewhat independent person (I moved 7,000 miles from my family at age 22).

When I would mention these encounters to friends, my friends would have tears well up in their eyes at the thought that a doctor could suggest that I should destroy Ben. And I thought, .. huh?? This is MY kid, and you are crying... and I am not?? 

Call me Mr. Spock … but the idea of destroying Ben was a non-issue, since the ‘choice’ to do so was entirely in my power and I knew I would not allow that. I don't get emotionally upset at potentialities. Good grief, he was so sick, and there were so many unknowns. If I had mentally chased every bunny trail of what could have gone wrong, I would be neurotic by now. 

Venting

Another event I remember involved a short-term friend C., whom I met when Ben had his second heart surgery and managed to stay in the hospital for almost four weeks due to post-operative complications. 

C.’s son was in the same intensive care unit as Ben, and when C.’s son’s recovery was complicated by pneumos, she freaked out and spit nails at doctors and nurses right and left right there in the cardio-thoracic ICU. She was acting out of raw fear – her fear that her son would not recover.  She was fit to be tied, and the nurse exited inconspicuously while nodding to me that this was my friend and I would be the best person to talk her down to size. 

Nothing wrong with C's reaction, and she was a chill gal most of the time, and she needed to let it out. That was not me-- at least not in public. I was raised to be a polite inconspicuous Scandinavian who tries hard not to inconvenience others. At times when my son's life was threatened, I'd either move into action (if there were something  I could do) or I would internalize it, or try to process it by discussing the details with the cardiologist. Somehow understanding the scientific details engaged me in intellectual pursuits which somehow dulled my fears and gave me an illusion of control. 

Then there are the long-term threats, like the realities of what my kid will actually be able to do or not able to do in life.  Parents of special needs have a variety of coping mechanisms there too.

When your kid is really really sick, like mine was, you tend adapt what I call the total-parent-child-bond, where this kiddo is the only thing that matters to you, and caring for him trumps anything else you do. 

This backfires....

... when he gets well (or if he dies) you have no life left, and no friends either – doctors, nurses, surgeons, nutritionists, respiratory therapists, the medical supply delivery truck driver, and your friendly Walgreen's pharmacist were your only friends -- all paid friends. – I kid you not, when we moved from Michigan to Colorado, we got a SIGNED CARD from everyone on staff at our local pharmacy at Walgreen's in Portage, Michigan to tell us good bye. We had teary eyed goodbyes and hugs with pediatrics and cardiology, especially.

I was in the total-parent-child-bond for about six years because Ben was so sick, and I think it is a dangerous place to be because it is not-sustainable. Your kid will get better, or your kid may die, and you will come out on the other side, having missed happenings in the rest of the world -- you forgot Aunt Ethel's birthday  ten years in a row and she is miffed. you don't see your neighbors, your church doesn't remember your family any more, and the people you thought WOULD be there for you when you are finally out of the medical tunnel have gotten new friends and have busy lives that have moved on. 

Medical Friends

As examples of my sheltered existence for those six years, I have no recollections of the second Clinton presidency – what he did or did not do, whether the economy was good or bad, what happened in the rest of the world during those years.  That pretty much translates to Kosovo and the Balkans  did not happen in my little universe of medics, oxygen tanks, G-tubes, and feeding pumps.  

I have heard that some moms get so dependent on Medical-ville in this stage that when their child is about to get better they develop Munchhausen-by-proxy syndrome and actually physically MAKE their kid ill just so they can come back to the hospital... so they can stay in the world they feel loved in – kinda like a recently released convict who commits a crime so he can go back to prison because he does not know how to function in the real world.

I was  not like that. I was relieved when the pressure let up and every morning was not a game of dice where the options were ER, doctor's office, inpatient, surgery, or stay home and tube feed.

I always the one who did everything for Ben in the early years. -- Not healthy -- I saw other parents of special needs children who were seriously ill, who took turns in the hospital, who shared the care of the child, who took turns being up at night, and I think that is a healthier mode than what I ended up in. When my son was three, I was offered the chance to go to a silent retreat, and I realized that nobody else in my household was capable of taking care of Ben, so in effect I could not leave without training folks, getting nursing support, etc. And I did make that change, untied myself a bit from that leash, and left for 2 glorious days of simple foods, quiet evenings with candle light, the woods, a few girlfriends and some much needed rest.

Blame

One of the more toxic coping mechanism for us parents of chronically ill children is: ‘whose fault is this?’. 

I had friends who had a great need to blame someone. Not that anyone blamed anyone for a kid being born with a specific syndrome, but when something went wrong with that kid, when a doctor failed to notice a condition, or to take it seriously soon enough, all the negative energy pent up (from the frustration of having a child with a chromosomal abnormality and all the side effects ensuing from such a condition) could then be targeted at that one physician who made that one mistake on that one day. 

It’s kinda akin to kicking the dog after you have had a bad day at work.  He is the next thing that crosses your path, you have had it up to here and then some, and he just happens to be in the wrong place at the wrong time. I think we all do that, at times, and hopefully we ask forgiveness and restore relationships, but the danger comes in when that becomes a life obsession – always trying to find someone to blame when something goes terribly wrong.

Anger

I have met many parents of kids with special needs who at the root are very angry people. They are angry at school, at all that school should be doing for their kiddo, but isn't. They are angry at doctors who didn't catch certain symptoms, or who chose the wrong treatment. A good example of this is the crowd of parents who band together to blame their child’s autism on the MMR vaccine – a claim that cannot be substantiated scientifically, and in fact, one that has been refuted thoroughly by the medical community (http://www.immunize.org/catg.d/p4026.pdf) . They feel angry. They are dealing with what they do not want to deal with, and they are profoundly disappointed in the issues that their child has. Life has thrown a curved ball, and they cope by finding someone to blame, someone outside the family, and they unleash their anger by joining the anti-vaccine community and spreading its message.

Not to elevate myself beyond the reach of anger. I have had many angry moments, moments where I felt trapped by having to care for this medically complicated person. I gave up a career in nuclear physics research, I was much removed (for a season) from my three older kids because I had to take care of Ben, and now that Ben is an adult, there are still times where I fear the future in terms of how I am going to manage to work and have Ben in adequate care that I can spend my 40-50 hours per week on my job.  When things go ‘wrong’… like chromosomes divide incorrectly and a child is born with a ‘syndrome’, there are a host of feelings to deal with: anger, fear, frustration are the chief ones, and we parents of these kids are changed forever as we deal with those emotions through the rest of our lives and through the rest of our children’s lives.

Many of my friends have become advocates for special needs and sit on councils and in committees, or get jobs in  the special needs care  industry. They know every law, everything their kiddo is entitled to and they are super resource centers for new parents and ignorant parents like myself.

Breaking Free

When Ben “finally” got better—somewhere around 2003 when he turned seven, we happened to move to Colorado. I saw this as my big break. I wanted out of Medical-ville SO BADLY. And since I was leaving behind Dr. Page, Dr. Loker, Teresa the audiologist, Jan our nutritionist, so say nothing of Dr. Sommers, and the whole cleft team at C. S. Motts. Since I was going to a place where nurses would not fight over who got Ben, to a place where the receptionist in cardiology would not beam at me and discuss knitting with me when I walked in, I decided to redefine my life.

In Colorado we put Ben in school, and I started writing books, getting more involved with Church, and amazingly Ben’s health was super (for the most part, apart from that once a year pneumonia and that annual surgery or two). – I actually became SO IGNORANT of special needs issues as I focused on the classics, started knitting socks, and reading the Aeneid in Latin with my older kids, that when Ben turned 16 I found out that I had missed – by two years—the time to sign him up on the long wait list for adult long term Medicaid.  

HAH!! Ignorance is not always bliss.

I did not join another support group till Fall 2014, just in time to get on board with Ben’s guardianship, etc. which I have spent many other blog posts outlining. Neglect, perhaps. I needed a break. And in the meantime, I have a job now, a life, a church, friends, and I also have a corner of my life which is dedicated to special needs.  – 

My life is more balanced now.

But, life with special needs is a roller-coaster, perhaps just like the rest of life, only more severe in the ups and downs, and in the turns. There is never a day where I can just drop everything and go somewhere. I always need to find care before making plans (just like you did when your kids were under 8).   - How do we cope?  We just do -- because we have to. This is the hand God has dealt me. It is the hand I must play. Best to do it cheerfully whenever I can. (Which is -- some of the time.)