Do we accept our children's disabilities?

For biological parents of children with disabilities, one of the most difficult things is to accept the child's disability--to accept the child just as he or she is.

I know this sounds cliche, and I realize that most parents would say, "Yes, I have accepted that Jimmy has Down Syndrome, of course I have. I have lived with it for 12 years. What a silly thing to write a blog post about."

So let me qualify what I mean. 

When we first get a diagnosis for our kids, the first reaction most of us have is shock. For me it was when I was 17 weeks pregnant. I went in for a routine scan of the baby. The ultrasound technician took forever with the scan. I knew something had to be wrong, since this was my fourth child, and none of the others had ever taken that long to be scanned.

Well, lo and behold, the technician called the doctor into the room. The doctor starts by saying, "Should I get your husband in here first?" And my response was, that if she had something to say to me, she had better just say it. And so she did. Cleft lip and palate was the most obvious defect. Add in, a significant heart defect, which she was not qualified to comment further on, possibly my baby had no stomach, at least none that they could see on the scan that day.

Gulp... suck in the stomach, stiff upper lip, square jaw, and I moved on ....(after a weekend of non stop weeping while I dug a vegetable garden during that dismal April 1996) . Did not call extended family... didn't want to talk to anyone.

 Further scanning the following week with a pediatric cardiologist  (who became our medical best friend for the subsequent 7 years that we remained in Michigan) showed the likelihood of Down Syndrome ... and you know the rest of the story :).

How does one live with and accept that? Well, time is the healer of most wounds. One gets used to whatever one cannot fix, obviously, and so one deals with it because one must. :)

But that is not the whole story, and I am not sure that ONE (or at least not I) totally deals with everything... or that one really can. One adjusts and copes, but one cannot always look it all square in the face and see it all. One 'dodges' and 'misses' or flat out 'refuses to see' certain things because one is overwhelmed and one filters stuff out.

What do I mean?

One huge issue that I have so not been able to take in and process has been Ben's difficulty in the area of speech. At first, I was told that Ben would never speak, not beyond the oh, and ah, and eee and other vowel sounds that he produced. Well, given that he has Down's I knew speech would be difficult, add on a hearing impairment (mild to moderate) due to dysfunctional Eustachian tubes that came with the cleft palate,  and finally add on (from the repaired cleft lip) an under-bite to the tune of a 1.5 cm protruding lower jaw (beyond the upper jaw), and you have speech issues that go above and beyond any one of his many conditions taken in isolation.

Does he speak? You bet! He has  a ton to say, and he does speak in complete sentences (as evidenced by his writing and by what those of us who understand him best know.) Problem is, very few people outside the family can understand what he says. His speech is slurred, he has little hearing in the frequency range where s's and z's are pronounced, and he cannot construct a sound like t or f .  In addition, he lives in NERD country where everyone speaks a mile a minute, and where dinner conversation is about hydrogen spectral lines and Greek participles in Thucydides. He tries to imitate our speech and the best he can do often is to produce a bunch of additive syllables to his words that sound almost like stuttering. Those random additive syllables further confuse his speech for even the most dedicated listener. Result is that 90% of the time the innocent man on the street has NO IDEA what Ben is saying.

I knew this and I know this. And for years, I thought I was being honest about it in working with school and therapists to deal with the issue. School was saying Ben needs an assistive technology device, so he could push buttons and type/spell/clarify what he is saying, and we did have such devices, but our lives are and were and will continue to run so fast, it seemed impractical to me. The device was never there when we needed it, and kids he plays with at church or at school are going so fast, nobody is going to slow down enough for him to pull out a computer, push a button and clarify what he is going to say. --- And so, in a lot of ways, none of us in the family have really supported Ben's need to communicate that way. Instead, we have limped by with his speech issues, letting him get by as well as he could. 

I pushed hard for articulation speech therapy. If only someone could help him learn to SAY those sounds properly, then everyone would understand him. If only the speech therapist had more time with him to work on this, THEN things would work out. And in the past year, I have pursued deaf and hard and hearing private therapy, and Ben has sat with that lady working on his speech, and I think Ben's Momma has finally seen the light on the speech issue... which is.... ... yes, I blush to say it... what the school has been saying all along.... Ben cannot get by without an assistive device to clarify to the rest of the world what he is trying to say.

All this (and I will write a blog post about speech another day) to say that my own blind spot in this area was my wish of how he 'ought' to communicate, orally ----which he really is not capable of doing well enough to get by or have a social interaction with hardly anyone.

Acceptance of what is, is a difficult thing in a child with disabilities. I think when our kids are born (for those of us who are biological parents) we 'accept' our children as they are, as best we can. 

But we always dream a little beyond the diagnosis we are given. I remember thinking that by sheer will power, I would make this kid the smartest kid with Down's that the world had ever seen (no, not really, but yet... YES, I WOULD!!) But reality was that the first four years, I spent most of my time just keeping him alive (that can be the topic of another blog post as well). 

As Ben developed and unfolded (after 4 grueling medical years) with what he was capable of, I started feeling comfort in random aspects that he was very good at.  Whenever he showed any trait that defied Down Syndrome, like his very strong legs, I was heartened for a bit. Today, one of the things that heartens me is that he is so organized and orderly in his routines, his attention to detail in school work, and his energy for taking on tasks and following through (most kids with Downs bounce off walls and are completely scattered and inattentive). He is so very cooperative, like in the dentist's chair, or with a medical procedure... or right now when he wears a splint to bed for his right leg--- he never balks, he just does so, consistently, on his own.

But the truth of the matter is, Down's is not a revelation that came at 17 weeks of pregnancy and then it was  all said and down and now we just live with it. 

=> => => Down's is a continuing revelation of a host of issues that keep cropping up <= <=

These issues range from spinal scoliosis, to hypothyriodism, to reflux disease, to issues with feet (flat, turning out, learning to knee and hip problems), as well as a mild persistent fear of moving into autistic behaviors, to say nothing of long term premature onset geriatric additional issues such as Alzheimers, ... the list is endless.

Not that he gets all of them or that life is one long fear of what might happen. For the most part I live with what is until an issue crops up. We don’t live in fear!! NEVER!!  

But things do crop up and continue to crop up healthwise, behavior wise, mental health wise with Down’s. Langdon Down's syndrome continues to reveal aspects of adolescent and adult life that sometimes completely takes a parent aback.  Ben’s latest has been persistent issues with his feet and joints as well as WHAT... to do with his jaw, orthodontics, skull issues long term (my project for spring and summer 2014).

Most of the time life moves on, and when something looks like it is lingering, I tend to ignore it with the mild arrogant attitude that if it is a real problem, it will surely get worse. (A tactic I learned from Ben’s first pediatrician…. That was his response to any issue that looked like it might become emergent J)

Ben is  (in the words of our beloved pediatric cardiologist from Michigan in one of his reports) a 17 year old male with Down syndrome in “no acute distress”. That is the mode we operate in most of the time, thank God!

We have accepted who he is and what the syndrome might bring next – whatever that is, but I do believe that REAL AND TOTAL acceptance in a more profound sense is not possible (at least not for me). 

Had I known, at 17 weeks pregnancy, what I would deal with, with this child, for the first 4 years, I would have collapsed in despair (another blog post). The intensity that life in the hospital with Ben required during those years, while I had an 18 month old, a 3 year old, and a 6 year old at home, was such that only my daily naive and ignorant hope that things could not get any worse held me up and got me through those days.

At a very real level, I think the ignorance we parents live under in regards to our kids, CAN be our bliss. If we knew how profoundly and incurably impossible some things are for our disabled children---and what dismal prospects the future sometimes holds, realistically speaking --- we would despair. Stark realism is not our medicine; it would be the death of our  wills to live and keep trying. We have to dream and hope and overlook, the same way we do for every other person we love --- our love covers, not only a multitude of sins, as the Bible says, but also a multitude of imperfections and shortcomings. --- in the words of St. Paul: [Love]  always protects, always trusts, always hopes, always perseveres.

It must. And so it does. Thank God!!