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.)

Acceptance, Awareness?? All trite terms, and how do we?

I talked in my last blog about the isolation of individuals who are developmentally delayed and of how society as a whole views them and to some extent subconsciously avoids them.  And I don’t mean ‘society’ in the Jane Austen sense of ‘those we grovel at, so we get to be part of the in group’, but merely people whom we naturally rub shoulders with, like extended family, neighbors, church, sports clubs, parks, work.

Last time I also mentioned how we sometimes talk to young adults and adults with special needs as if they were six—in a sort of preachy moralizing tone that goes on and on and bears down on the individual with the aim of generating some level of shame in the individual ... and then last night I was so totally guilty of that very behavior. Ben was taking a bath, and of course we extend the same level of privacy to him that we extend to any other member of the family (or, we try to, but we don’t always succeed).

You see, the issue is that he does not have too much sense of how much shampoo and bubble bath to use (he loves bubble bath!) and we don’t really want to add weekly bottles of Ben shampoo and bubble bath to our grocery budget. So I do monitor the use of supplies by giving out appropriate amounts at the proper times. Or at least, so far, I have not found a better way to deal with this.

What do I behold when I enter, but a bathroom which evidences the remains of a massive tsunami? Totally understandable, really, when one considers that he was playing with all his Matchbox sized Cars II vehicles. :)

Well, it is not the first time I have mentioned to Ben that tsunamis in the bathroom do not come highly recommended. This time I turned up the tone in hopes of generating some empathy for my cause. Problem with us adults when we deal with six year olds is that when we are out to make an impression, we feel that we have to put the emotional stakes high enough that there is a threat/intimidation level present in our message. Once we drive that message home, we forget to quit. Instead, we go for broke—just in case--especially if the kid in question does not respond as receptively as we would expect him to.

Basically we parents don’t always know when to quit. Nor when to employ alternative creative strategies which in the long haul may be more effective. At some level I think it’s called emotional unloading. We are wrought at what we have seen perpetrated at the hands of this ‘kid’, and we need to bring ourselves down from the emotional high, and we achieve this by not shutting up in a timely fashion :P .

One time my daughter got scolded by a lady after church for sharing a laugh with another kid during a church service. My daughter was outraged because the accusation was actually inaccurate (she didn't laugh, she only smiled at the other kid). Kirsten, being my daughter, tried to argue with her, but the lady would rant nonetheless. When the lady finally left, the other girl who came from a family of five and was used to being lectured at  told Kirsten: “Just say you are very very sorry and that you will never do it again, and it will be over a whole lot sooner.” :)

And it was precisely that strategy that Ben used with me last night when I was trying to impress on him the necessity of not flooding the bathroom floor when he takes a bath. “Yes. Ok, I am sorry.” In fact, he is most agreeable, and it's precisely that strategy of "if I agree with her, she will shut up sooner."

All that to emphatically say that what I preach, I don’t always practice as well as I wish I did.

But back to my main concern and discussion about acceptance of persons with mental disabilities. It is a difficult issue, partly because so many of the persons who would be born with, f.ex. Down’s, are selectively aborted. We have effectively purged from our society about 2/3 of such individuals (my rough guess based on some statistics I heard in the Danish news) and as such, fewer of us deal with these persons, and even fewer of us begin to have a clue as to how we should best deal with such persons. (And by no means am i trying to give the impression that I have all the answers... on the contrary, I have all the questions, because I live with this all the time!)

In the 50s and 60s persons who were disabled or mentally ill were more or less incarcerated in group homes, and we saw little enough of them. Now, for the mentally ill, we see a significant number as homeless because they do not know how to deal with modern living. For the mentally disabled or developmentally delayed, we—society—do (does) have the good sense to realize that they do not have the judgment or capacity to live alone, let alone make a living, but integration is not a simple process, and as I hinted at, while we’re awesome with toddlers of whatever stripe of delays, we’re not so successful with adults.

Adults who are developmentally delayed (which is often code for permanently delayed), are ‘there’, sort of, but not really there either. We smile and greet them. We may even give them a high five. Some people (actually quite a few) laugh nervously at everything the developmentally delayed person says, as if he were a cute four year old. Let me put this strategy to rest immediately. At least for my son Ben, there is nothing he hates more than the friendly nervous laugh of a random stranger (or an acquaintance from church). In fact, most of the time Ben says, “please don’t” when people do that because he feels so not included when there is a laugh and he usually internalizes the fact of the laugh and thinks the person is laughing at him, and that hurts him.

My honest feel for what we—society—don’t get is what it means for a person with Down’s of, say 25 years of age, to be an adult. We don’t know how to talk to the person, we don’t know what the person ought to be doing. If we are in America, we also don’t know who should be paying that $150-$300 per day care for that developmentally delayed person after age 21 or 26, depending on the state ( and trust me! Neither does the devastated parents of that developmentally delayed person). But I will save the money and adult care discussion for another day and limit this solely to social interactions.

Adulthood, at least in America (I can’t speak for the rest of the world) is an earned proposition. We rise to a certain level of responsibility. We acquire independence through proving that we are capable of assuming the responsibility. Nobody takes care of us any more. We have fully arrived at adulthood. With that adulthood comes independence and with independence, the respect and the esteem that every person aims for.

How can we bestow adulthood on persons with developmental delays when we as parents can barely muster it for our own late teen and early twenty college students?

Financial independence is the one  (and greatest) measure of adulthood in America.

And yet,  since we bestow legal adulthood on anyone 18 and above, we have to think broader in terms of rendering respect, understanding, and acceptance to individuals who are 18 and over, but who do not meet the independence criterion for adult hood.

18 is an artificial legal line that has been drawn for smoking, voting, military service, and age of accountability for criminal behaviors. If financial independence is the ultimate measure, my son with Down’s will never reach an age where he will be greeted as an equal or respected in his own right. And with him go scores of other persons with disabilities, as well as a slew of college and graduate students who ostensibly could get there, but who are taking the long road to adulthood and respectability.

Can we redefine adulthood without diminishing the expectations of the average typical person to eventually (the sooner the better) reach financial independence and responsibility for his own actions?

Or can we at least define adulthood for the special needs person as having 18+ years’ experience of life in the body and mind that God gave him? And as a result of this, can we choose to try to treat that person with the respect he craves?

Remember, unlike typical adults, the person with Down’s is expecting very little of your interaction with him. He is happy to share a donut or a cup of tea, or merely to be allowed to sit next to you. He does not cringe because you have nothing to say to him. His ability to sit in emphatic silence is something the rest of us could learn from. Silence is part of his life, much of it (and especially my son who is hard of hearing and speech delayed), and so long as it is a pleasant environment, he does not always require any conversation directed neither his way, nor any conversation at all.

 When he wants to talk he will use his electronic device, write on a piece of paper, or simply try to articulate what is on his mind. He expects little of your return talk. If you receive his talk positively (and that simply implies that you listened), he is content that he made a connection. Rarely does he even require a specific response.

I am not advocating anything here that needs to be legal or enforced. I am simply looking for 'awareness' (however trite that term has become nowadays). In particular for those of us who strongly advocate that abortion of mentally challenged babies is so very wrong -- we need to carry that principle through in terms of support of parents who 'choose' (and yes, it is a choice, since Roe V. Wade) to keep their disabled children, such that society is welcoming to these disabled individuals when they become adults.  And that requires some level of re-education as to how to interact with these 'NOT perpetual children-neither in mind nor in body' individuals.