Casaubon's Book

The Future of Our Disabled Children

I wrote this in 2008 – now Eli is a 5’9, 120lb almost-teen.  We’re getting ready to celebrate his bar mitzvah in a few months, which will be an adaptive celebration of not only what Eli can do, but also what our community has done for him over the years.  Adolescence and autism combine with some pretty significant challenges, but Eli is also doing well and becoming an interesting and delightful big person.  It seemed to bear repeating, since so many of us deal with these kinds of challenges and worries.

Yesterday morning, Eli put on snowpants and boots before he went outside.  This was a big accomplishment for him – for years we’ve been struggling to balance his need to be outside in all sorts of weather with the fact that he really doesn’t like socks, shoes or shirts that much.  In June, this is no problem, but as the world gets colder, each year we have to struggle with the “Eli, you have to be dressed before you go out, and yes, you actually have to keep the clothes on.”

But this year he really got it – we had some snow last weekend, and Eli got that the snowpants helped keep him dry, so when he wanted to go out to play in the fenced yard,  he put on snowpants, all by himself.  Now the little hitch in this story is that the snowpants were his three year old brother, Asher’s, and he could only get part way into them. Eli, at 4’8 is a strapping young man, and you can just imagine how the toddler pants fit.   And then the boots that he found were his Dad’s.  Oh, and he only found one of them.  So Eric found him outside on the front porch, hopping as best he could in a 3 year old’s snowpants and one giant boot.  And the snow had mostly melted.  But still.

Now we laughed (because we knew he would forgive us) but silly as it looked, this was a huge accomplishment for Eli, and while we were finding appropriate weather gear and helping him get it on, we told him how terrifically proud of him we were – and we were.

If you had to describe me, the words “wordy” “overeducated” and “overthinker” probably wouldn’t be wildly inappropriate.  I think some part of me assumed that my kids would live in language, as I do, like fish in water.  Instead, I got a little boy for whom language is a mystery, who fits into words about as well as he fit into those boots and snowpants.  He’s healthy, happy, funny and athletic – but words are not his thing, and probably never will be.  He’ll always need his parents or some other family member to help him navigate the world, at least some of the time.  Having an autistic kid is rather like going to the shelter to adopt an puppy, and coming home with a kitten.  It isn’t that kittens are bad – they are terrific – but if you go around thinking that you are going to get it to walk on a leash and bark for you, you are in for a rough time.

But that, at least for me, is the great gift of having a disabled child as well.  Because while having your puppy meow can be shocking and overwhelming, especially for parents who deal with much tougher permutations or deep health issues – it also does a lot to help you recognize what really matters – and that spills over into your worldview and tends to mellow it.  It is hard to spend a lot of time worrying that one kid might get into a second tier college, or might not make first string soccer, while you are getting really excited because your 11 year old finally walked himself to the bathroom with his crutches.  Disabled kids have their challenges, but they also get you right down to brass tacks – because of Eli I know that I’ll be thrilled if each of my boys is a good man, a mensch, does good work in the world and grows to fulfill their potential.  This is truly a gift – it is immensely freeing, and frankly, it saves a lot of time and energy.

But being freed from expectations doesn’t mean that facing a shifting world with kids with disabilities isn’t hard.  There are plenty of pleasures and compensations for most of us, but they can’t override the basic fear that a world already hard for our kids, is about to get less hospitable.

I’m grateful to a single mother who jump-started this post about what to do  by sending me part of a lovely piece she’d written on the subject of adapting with her two special-needs daughters, one with a potentially life-threatening condition.  This is what she wrote:

Like many parents of special needs children, I wonder – and worry – a lot about what effect this strange new world we are racing into will have on our sons and daughters. So many wonderful advances had been made in how we teach non-typically developing children and so many new technologies make life easier for people will all sorts of handicaps. What will happen when the battery powered wheelchairs can’t be recharged? When the school buses stop running? When the less common drugs are unprofitable to manufacture? When the time need for a theory routine is need for gardening for wood chopping?

Then, last night, I had an epiphany. It doesn’t answer any of my questions, but it gave me a bit of comfort that I’d like to share with others.

My older daughter was getting ready to babysit with her girl scout troop, and as she went through the toy closet, she pulled out a copy of Pizza Party, a game for young children where each player has a cardboard slice of pizza with holes in it, and fills it with circles representing different topping in order to complete a slice. A couple of years ago, she’d adapted it to play with a blind friend, cutting pieces of paper, cloth and sandpaper to represent three of the four topping and gluing them onto the pieces. Every time they played there were lots of jokes about eating sandpaper pizza.

I realized that families (and friends) of special needs children are all ready used to adapting, as are adults who themselves have special needs. We look at the bits and pieces of daily life – from socks to knives and forks to stair to backpacks to toilets to homework routines and lunch packing – and find different way of doing things that are better for us. And because children grow and change, we have to keep changing how we do things. This goes for all children, of course, but for some parents, making the transition from finger food to cutlery means proving a spoon at the right time, and for others, finding the spoon with just the correct angle between the bowl and the handle, or bending a spoon, drilling a hole in the handle and wedging a peg in to provide a better grip.

And we learn to adapt on the fly – in restaurants, at friends’ houses, school picnics – anywhere our child wants to do something and we need to make a change. And later, if we are lucky, our children start making suggestions and fixing things on their own.

We do this until it becomes second nature for us – and other members of our families. I didn’t have to tell my older daughter how to fix the game so her friend could play it. She didn’t even ask if she could, just got what she needed and set to.

It’s nice to think that this ability to see that we need a different way of doing things will help us in the days to come.

I’ve found what she has – that the practice of living in a world we didn’t expect, of shifting to a different worldview and dealing with crisis as a routine part of my life, has, I think helped me adapt.

Now don’t get me wrong – there’s a lot to be worried about in raising a kid with disabilities in a changing world.  But I do think it is worth starting with the assets, the benefits and the gifts.  I say this for several reasons.  The first is that I think those of us who have special needs kids have already had a kind of boot camp in adapting to shifting realities.  Unlike a parent who always knows what is coming next – first they crawled, then they walked, then they ran – we’ve gotten used to not knowing.

The other reason is that we live in a society that so deeply undervalues the disabled and overestimates their burdens (and this is not to underestimate them – I realize many parents have children who are much more demanding than I do).  I think this is best epitomized in our reproductive culture, where the risk of having a disabled child (discoverable by amniocentesis) is listed as equivalent to the risk of late miscarriage/early stillbirth caused by amniocentesis itself.  That is, pregnant women are told that losing their wanted pregnancy at 16-18 weeks is a worthwhile risk, because otherwise, are just as likely to have a disabled child.  That is, our reproductive culture says that having your baby die and be born with Down’s syndrome or spina bifida are equivalent losses.  This is just one example of the thousands of ways we learn that having a child with a disability is bad, wrong, to be avoided at all costs.  I’m pro-choice, but find the false-equivalency here to be both demeaning to the disabled and dishonest to women struggling to make decisions.

Many parents who choose to bear or adopt a child they know will be disabled are strongly discouraged – they are told over and over again that such a child will be an unbearable burden, that the burden will be a one-sided destructive force.  When parents discover an unsuspected disability, often the assumption is that the child is a total loss to the family, a disaster they have to bear up under, and that they’d be better off without it.

My claim is not that the blessings of such children always compensate for the losses – sometimes they do, sometimes they do not and it is always hard to know until you live it.  What I’m trying to get at is that our society so heavily overestimates the suffering caused by a disabled child that I think it is urgent to recognize that such children do not exist solely as a drag on their families.  The assumption that such children will inevitably cost their siblings goes along with the idea that disabled children are a burden – and there’s some truth – they do cost their siblings something sometimes.  And they return something to them.

When Simon was small, he was terrified of the dark.  From very early on, he and Eli slept together – at first I couldn’t keep Eli from climbing in his crib, and by the time Simon was old enough to sleep in a bed, the two were inseperable at night.  My fearful, non-disabled younger son relied on the stability, warmth and comfort of his not-at-all fearful older brother.  When Simon awoke in the night, if Eli’s body was not nearby, he would cry out “I need E-li!!!!”  At no point in any of my children’s lives has the relationship ever worked one way, one child giving, the other taking – reciprocity is not always even, but it is always present, and has been present in the lives of most families of disabled children I know.

This is important because as our society becomes less wealthy, and as certain kinds of reproductive healthcare become less part of many people’s lives, more of us may have fewer choices about disabled children.  The choosing whether to give birth to a child with a disability will probably not disappear entirely, but there is a very good chance that those options will be the territory of an increasingly small number of wealthy people.  And if times get hard enough, we will probably see more children who are damaged by drugs and alcohol, and more children who have disabilities that might have been minimized or repaired by costly medical treatment, but who now have no access to such treatment.

One of the things we can and I think must do – for our own sakes and for the parents who come after us, is do what we can to change the assumption that disabled children a disaster, so huge a disaster that anything would be worse than having them.  This belief burdens parents, children, siblings, and it subtly shapes the culture in destructive ways – not just for disabled children, but for anyone who becomes disabled by illness or age.

Ok, beyond appreciating what you can appreciate (and I know I have this one easy – my child is physically healthy and responsive to me – for many people the bright side can be harder to find, and I truly understand that), what kind of preparations for the future should we be making for our disabled kids?  What new challenges might we face, and how might we deal with them?

1. I would expect to see services decline and be disrupted in many cases.  To the extent that’s possible, most of us should have contingency plans and the ability to keep some of our kids’ programs going ourselves, or with help.

- To some degree, services for disabled children will likely be among the last things to go in school systems, because in the US, the Americans with Disabilities Act mandates special needs services.  In the early stages, parents may have to act as advocates for their kids.  But in places where there are no funds, and without a rapid federal response, services will be cut eventually. Even suing won’t make money magically appear.   Moreover, increasing numbers of climate change related natural disasters may close schools.  This means the huge and overwhelming burden of helping your kids learn to function in the world may fall on parents and extended family members.  That means learning now how to meet as many of their needs as possible – attend parent trainings, watch your child’s therapists, talk to them about dealing with disruptions.  Consider recruiting help – grandparents, college students, teenagers, neighbors – anyone good with disabled kids might be able to learn to provide some support, and take the burden off of parents.   I realize none of this is easy, especially for families facing more, not less economic pressure.  And being your kid’s therapist is not a delight in many cases (it would not have been for me).  But we do have to face the reality that we may have to do some of this work – or find ways to get others to do it.

2.  Financial planning for your child’s future is not sufficient – the money may not be there when your child needs it.  Make backup plans for kids’ longterm future that rely on people rather than funds.  Start preparing family members, including kids, for this reality early.

- We can see this now – the money we’ve been saving for our kids is disappearing rapidly. That means that instead of expecting our kids to live in an apartment with paid help after we’re gone, our kids may need to rely on an aunt or a sibling.  We need to talk about this, and make plans.  And our other children, or nieces and nephews need to understand – gently, lovingly, age appropriately – that we parents will bear the responsibility of our children as long and as fully as we can, but that someday, their sister or brother or cousin may need their help.  In our society, we tend to see this as unfair – and it is, a little.

The truth is having responsibility for others is not only a burden.  We can and should teach our non-disabled kids to view it this way – while also keeping too-heavy responsibilities off their shoulders as long as we can.  It is a balancing act – but an important one.

3. Work as hard as you can now to help your child achieve their full, functional potential.  We need to make sure that our kids can do everything they are able to for themselves, and return as much as they can for others.  In some ways, the coming shifts may not be bad for some kids – those with intellectual limitations may find that they do better in a society that emphasizes practical skills more than this one.  Kids need to be taught the value of hard work and discipline (this is easier said than done with some kids, I know), and be taught to participate in their world.  Start early on whatever practical skills your child can manage.  The difference between a burden and a responsibility is a child who learns to contribute to the extent of their abilities.  Children should be taught a trade when possible, certainly to participate in household and family activities.  Children who are going to receive must also learn to give.

4. For children who depend on high-cost health care, begin now making contingency plans to keep that coming.  My hope is that we will have lasting access to some form of lower-input health care, but that’s not certain.  If not, all of us are going to have to be advocates who get to know the resources available very well – many of us already are, but as resources get more limited, making sure our kids get their basic needs met becomes more and more essential. Now is the time to talk to your doctor about ways to get an extra reserve of medications, to your utility about making sure you don’t shut off electricity to a child who depends on it. Now is the time to talk to your hospital and your community about ensuring health care for the most vulnerable.

5. Forgive yourself for your limitations as a parent.  This has been something of a challenge for us – early on we decided that we would not be the kind of parents of an autistic child who devote their whole existance to that child, to “overcoming” autism.  We explicitly decided that after Eli’s many hours of therapy and training, he should come home to playtime and family time, and to being a participant in our family, rather than the center of our world.  I still believe this, but that doesn’t mean that I don’t sometimes wonder whether we made the wrong choice, if Eli would be more functional if we worked with him constantly and shifted our focus.  As times get more difficult, parents are likely to have to try and take the place of more professionals – and, frankly, we’re likely to fail sometimes.  What we don’t won’t be as good as the army of speech therapists and physical therapists.  It won’t be perfect.  Our kids may not go as far as they could have in a richer world where everything was better.  Or they may go further in different directions.  But the truth is that if we’ve done what we can, we’ve done what we can, and beating ourselves up for our imperfections is a waste of time.

6. Don’t isolate your child from the community.  I know a mother of a recently-diagnosed autistic preschooler who tells me “we never go anywhere, we can’t take him anywhere, he does weird things, he has trantrums…”  This is the wrong approach, no matter how hard, how embarassing, how uncomfortable it is, your child needs her community desperately – we don’t know what the future is going to bring, but all of us are going to need community.  So as difficult as it is to load up the wheelchair, as uncomfortable as it is to take out a child who has tantrums, as hard as it is to ask for help or to ask the neighbor kids to include your child – we have to.  We have to find ways for our children to participate in our society, so that when our communities come together, it will be as natural to include them as it can be.  The same is true with extended families, biological and chosen – your kids will need their family, and the people who love them.

7. If you are preparing, invest in adaptive strategies that will make your life easier.  The best money we ever spent in our lives was the inheritance from my husband’s grandparents we spent on fencing our front yard – now I can be gardening without looking up in panic and wondering where Eli has wandered to.  To the extent you can, make your own life and your child’s life easier – make the barn wheelchair accessible, get the assistive devices or dog.  And don’t let what you hope will be blind you to the reality that you may have to deal with things as they are now – no matter how much you hope your child will toilet train before the apocalypse, get some large-sized cloth diapers.  Be prepared to go forward from where you are.

8. Despite my focus on the benefits, I don’t want to include too much sentimental bullshit here – the idea that G-d never gives you more than you can handle is, to my mind, so much crap – plenty of people, including me, are regularly over their limits.  Yes, you need to love your kids and appreciate them for what they are.  But remember, you also get to complain.  So does your spouse and so do their siblings.  You don’t have to be constantly happy and feel blessed – I’m a Jew, and in my faith, whining is a sacrament.  It is ok to be angry, be sad (and for those who may actually lose children in this, I can’t imagine walking in your shoes, and you don’t need my permission), to be pissed at G-d or the universe or fate, to be overwhelmed, to screw up.  This is hard stuff sometimes. Even when it is mostly good, sometimes it sucks – and the best way to drive yourself crazy is to deny.  Every parent of a disabled kid needs some good friends with shoulders to cry on, some people who will help out when you can’t take it any more, a certain measure of self-forgiveness, an outlet to distract yourself when you can’t take it anymore, and the ability to make a good Margarita or three.

I’m sure other parents in other circumstances have additional suggestions.  I hope this helps someone, I really do.

Shalom,

Sharon

Comments

  1. #1 Denise
    January 25, 2013

    The points made in your essay regarding children with disabilities also apply to dealing with the elderly members of our society. Of particular concern, is the level of care administered to those who are no longer considered ‘contributing’ members of society. My husband and I have watched with disgust and surprise as our elderly aunt’s physical and mental health declined. Following a series of unsuccessful attempts to keep her in her own home, the time came that for her own safety and welfare, she had to be placed in a nursing home. A woman of modest middle-income means, she paid her own way in the nursing home for the 1st 18 months of her care. As her legal guardians, my husband & I were give weekly updates of her progress and delays & she received every medical intervention needed to improve her condition. Eventually and inevitably, all of her savings and assets were expended on her care. The next step was to apply for state assistance. Her social security benefits, medicare, and state assistance no longer came close to the monthly payment amount the care facility had previously recieved while she was self-pay. Immediately, she was taken to less expensive, smaller, less specialized medical facilities for her health care. Our weekly updates made an immediate turn to ‘care meetings’ once every 6 months. We no longer received monthly written correspondence that summarized events, time-lines and progress. In addition, noticeable signs of deterioration in her level of bodily cleanliness appeared. She was sent to a physician who ordered an x-ray of the wrong leg. She attempted repeatedly to tell the x-ray technicians they were x-raying the wrong leg. No one listened. Two months later, we discovered this error on our own and she was returned to the medical facility to x-ray the correct leg at which time a massive blood clot was found. The point I am making is that there was an immediate and undoubtable difference in care between a self-paid resident and a state aid recipient. The advent of the so called Obama Care plan give me great pause with regard to the elderly, the impaired, and the disabled. I do not profess to be an authority on Obama Care but know enough to see that there are varying levels of care tied into it based on the age and disability of the patient. On a further note, using the example of my husband’s aunt as the patient, we were repeatedly told by state agencies that there is no differnece in the level of care for a state aid recipient. Sounds good, but we know better.

  2. #2 Margaret
    Harvard, IL
    January 30, 2013

    I “inherited” my three disabled brothers. Fortunately their disabilities are fairly mild though one is also burdened with schizoaffective disorder. They have all lived with me at the same time and now they all live outside my home though I expect one or more will return at sometime due to finances. I am guardian of two of them. I’ve gotten to know all of them much better (the plus) but they are a burden and a huge worry regarding their future. I am 13 years older than the youngest and fear that I will not be able to physically be able to care for them if necessary and worry where they may end up. I do get some support from some of my siblings (one in particular) and my husband. Not sure what advice I can give other than if you are a siblling of a disabled person and expect to take over their care become as informed as you can about any government benefits, community supports (at least at present) and the capabilities of your sibling.

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