Making a Future for the Disabled: Facing Hard Times With Special Needs Kids

Sharon December 10th, 2008

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.  The odds are good that 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. 

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.  My claim is not that the blessings of such children always compensate for the losses – 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 will have disabled children – the idea of 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.  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.  But 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 get some form of universal health care out of Obama’s “let’s hurl money at the problem” plan.  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 electricty 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

55 Responses to “Making a Future for the Disabled: Facing Hard Times With Special Needs Kids”

  1. Kay says:

    Sharon, what a wonderful post. My 11-year-old has high-functioning autism, and I spend a lot of time thinking/worrying about how he will function in the world as it is, much less in the world as it could be. We will be starting to homeschool next school year, with the aim of having greater control over his education, as well as having more time for him to develop his self-care skills. He’s bright, funny, and a good big brother, but almost helpless in taking care of himself. I’ve spent a lot of time in denial about his situation, but as a two-time cancer survivor myself, I rationally know that I will not always be around for him, and need to make the most of our time to help him get ready for the world. Thanks for your thoughts.

  2. Susan in NJ says:

    Good post, Sharon. As someone who for a long time lived among words and abstract math, and then lost those abilities for a while, I can relate to a lot of what you write even though I don’t have children or much experience with disabled children. #7 and a fair amount of the pratical content of this post also applies to folks with aging parents or who are aging themselves.

  3. MEA says:

    I once heard a mother of a severly disable daughter say that the most helpful thing she and her husband had done for each other was to agree that from time to time one or the other was allowed not to be able to cope, and just walk into the other room for five or ten minutes — as long as the other one was around, of course.

    MEA, who finds your comments help and encouraging.

  4. Anna says:

    Speaking as an Aspie (adult with Asperger’s), I have a cautious hope that our future next door will be better in some ways for our kind than it is now. What pains or stresses me the most is the fragmented, illogical nature of the Modern Society.

    “Going local” is a way to restore boundaries and expectations to human relationships. Aspies so desperately seek wholeness and orderliness to their worlds. I think I could function much better in a neighborhood where we depended on each other for safety, food and kindness than just living as strangers in our housing units like we do now. Weirdly, I actually enjoyed living in a dorm during college, because there were rules, sharing, and companionship close by when I desired it.

    The increased need for outdoorsy people (Aspies tend to be highly attuned to animals) in farming and real skilled labor is an advantage. Our lack of verbosity is no hindrance in the woods, barnyard, or workshop. Visual/spatial abilities certainly are more highly valued in a local economy than a modern one.

    Think hopefully.

  5. Anonymous says:

    Sharon,

    This is thoughtful, practical and needed: it’s worth a thousand of the Sarah Palins of the world’s empty rhetoric about helping disabled children and their families.

    Thank you.

  6. Vegan says:

    Sharon, thank you for the wonderful piece.

    Paz!

  7. Kelli Brew says:

    Thank you for this. I am concerned, too, about people with special needs. My son is 20 and is not officially disabled, but he has a heart condition and several joint replacements because of the chemotherapy that hopefully cured his leukemia for good.

    I think about the hundreds of thousands of dollars it cost to bring him to this point and of the amount of money it will take to keep him in heart medicine and new joints as he ages (and so does the joint hardware). I wonder what kind off triage systems will be put into place in our medical system when as the economy continues to worsen.

    Honestly, I worry very much about our sanity. When I think of a world of parents dealing with the frustration and grief of trying to get help for their children when there is no longer help available, it’s really alarming. It’s hard enough as it is… We are really going to need each other.

  8. sgl says:

    Here’s a video about Nick Vujicic, who was born without limbs, and all the things he manages to do by himself today at age 25. Perhaps some will find it inspirational.

    http://www.youtube.com/watch?v=0DxlJWJ_WfA

    you can read more about him at

    http://www.lifewithoutlimbs.org/about-nick-vujicic.php

    –sgl

  9. Ani says:

    And as the mother of a young adult special needs son, I can see how these issues extend to their adult lives. Mine is doing pretty well at present- way better than anyone ever imagined he would- but he does this with the help of funding. This funding has provided some start-up money for his own business and someone to help him with some of it as well as transportation. Without it he would be unable to have done this and would be sitting alone watching TV I would guess.

    I worry for him though as I don’t have the money to assist him if his funding is cut, nor the patience any longer(burnout is a real issue with special needs kids especially if one has done this for many years). He hasn’t managed to form a community of friends, due to the nature of his disability- and he has no siblings, cousins etc. So I do worry some about the future for him but don’t really see what I can do beyond hope that he is able to build enough success at this point that he can keep it going with less supports…. and as the economy tanks, funds for this sort of thing is always a target, as well as health care for low-income people.

    I wish communities in general were more supportive of special needs kids and adults but at least here in the US that is mostly not the case. We sort of expect that people who are paid to work with them will do what needs to be done and we don’t include them in our lives for the most part.
    As well special needs adults are often victimized- I know a number of instances out here in my area where adults are paid a pittance to do what others would expect a lot more money for and they don’t know any better so they do it- this really takes advantage of the special needs adults- with mental disabilities- and it just seems to be accepted I suppose.

  10. Lisa Z says:

    Anna, thank you for your comments. I like what you said.

    I’m the mother of an “Aspie”. I have read that these kids have come in “early”, not quite fitting in to the current society, to help us in this transition to a new world. And that they will function better/best in the changed times. This comes from rather “new age-y” types who talk about the Crystal and Indigo children, and I tend to be a bit too practical to go for all their talk. However, it’s something to hope for and the way you put it, Anna, Aspies and others will do better in the new times in very practical ways. Gives me even more hope!

  11. Fern says:

    Interestingly, I’m working with many of the same issues dealing with senior care right now. Mom is 91 and lives in Chicago while I’m in the DC area. She needs some support services, but the ones she has now are partially subsidized by the county.

    Having raised a child with what turned out to be minor disabilities (laundry list of delays, but now is possibly going blind at 21) has trained ME to be better at looking at options for her.

    Wish I could talk the 21 year old into getting cornea transplants NOW so he’ll have better chance of having vision later, though! It’s the only ‘treatment’ they have, and he feels he isn’t impaired enough yet (and he hopes ever) to need it.

  12. D says:

    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.

    Thank you times one trillion for this. When I became disabled about 7 years ago, the hardest thing to deal with after the chronic pain was the feeling that I was a burden on my husband and that I had nothing I could contribute to our household. It’s gotten better as I’ve learned to adapt, but it’s still a problem sometimes, precisely because of that societal message.

    Not to mention that being a disabled person who is interested in homesteading and is an environmentalist sometimes feels like a contradiction. There seems to be an almost universal presumption in both the self-sufficiency movement (from whom I get a lot of info – I don’t consider myself an adherent) and environmental circles that we are all robust, able-bodied citizens and will be until the day we suddenly drop dead whilst scything wheat or cross-country skiing in the woods (can I blame Teddy Roosevelt for this?). Even more troubling to me is a lingering attitude of social Darwinism or eugenics that colors some people’s outlook toward the changes we’ll be facing – that, for example, with the return of epidemics and the decline in healthcare, we will finally be rid of the “unfit” who are burdening (see, there’s that word) the earth and everyone living on it while contributing exactly nothing. In fact, someone wrote a comment to that effect here a month or so ago that had me biting my tongue pretty hard. Of course, the reality is that disabled folks and their families are, in some ways, very suited to a future where adapting in place is the norm, because we’re experts at that already.

    And that’s the thing – if we want to be able to survive on a rapidly changing planet, we need everybody’s participation, no exceptions. Everyone has something to contribute, and all of us will be a “burden” at some point in our lives. We have to make a shift from a Capitalist conception of individual people as units of perpetual labor to groups of people in constant, supportive interconnection. And I could say more but this is your blog, not mine ;)

    Thank you again for a very important and timely post.

  13. Jennie says:

    I always thought I would test my unborn child for disabilities. Growing up I watched my mother work with disabled children and I thought to myself, “I couldn’t do that.”
    But, the window to “safely” test my baby for the Spina-bifida/Downs syndrom closed last month without the test being done. I did the research on the risks of the test and how little it actually tells parents and realized that it didn’t matter anyway. Test or no test, I couldn’t, can’t abort my baby. Thankfully my husband agreed with me and we’re both much more interested in the evening poke-and-kick games than in tests we could be taking.
    I guess what I’m trying to say is, maybe mentalities can change. Maybe as the risks and costs increase, the lifestyles based on perfection will seem less appealing; and integrating different personality quirks and shortcomings into the community will seem like a better choice.

  14. sueinithaca says:

    Thank you for this post – it came at just the right time. We’re smack in the middle of the evaluation process for my 4 year old daughter. We’re almost certain to qualify for services on some level – the only question is where she’ll fall within the spectrum: sensory integration – PDDNOS – Asperger. I love your SPCA analogy – very true. When I think of all the attributes I wanted my child to have, I didn’t really get what I ordered (basically, I got a mini version of myself instead of the quiet mellow kid I wanted). But on the other hand, I got a child with more passion and intellectual curiosity than almost anyone else I know.

    Since autism/spectrum has come into my life, I’ve been bridling at the notion that we need to “cure autism.” I fully understand that my child is extremely functional and possessed of a mild variant, but she does NOT need a cure. What she needs is respect, understanding, and the emotional and intellectual tools to help her navigate her world and reach her potential. Whatever we end up calling it, she is who she is and does not need to be cured of herself.

  15. Anonymous says:

    Fern –

    I don’t know what eye condition your son has, but my husband also has a condition where eventually cornea transplants were, until recently, the only real treatment (Keratoconus). I recently read an article in the newspaper about a new alternative called the Boston Scleral Lens — we’re looking into whether he qualifies — you should check out their website — http://www.bostonsight.org — and see if it might be an alternative for your son. They say they are very good at getting insurance to cover the costs, and are themselves a nonprofit and can often help those who don’t have insurance or are denied coverage for this. Good luck!

  16. Fern says:

    Anonymous, thanks! That’s exactly what my son has. I will absolutely look into that. We tried the hard contacts, but my son can’t handle them (a result of his previous existing …. not disabilities, but challenges.

    Again, thanks!

    Fern

  17. Michelle says:

    Sharon,

    This was great. Thanks for posting it! I just want to share a quick personal story that fits in with the “better to lose a pregnancy than have a disabled child” crock. I was pregnant with my third child and because I was 35, I was sent up for an intensive ultrasound. Almost everything looked perfect, but there was one measurement that was in the gray area between “great” and “could signal Downs”. The perinatologist just assumed that I’d want an amnio, and was in fact so nonplussed when I declined that he called my midwife. “I don’t think that she understands what I told her,” he said. So the midwife dutifully called me to make sure I had understood (though she was sure I had). I told her that I wasn’t interested in the test because no matter what it revealed, I would not choose to abort the pregnancy. I’d asked the Lord for a baby, and He’d given me a baby. “Wow,” she said, “I wish I had your faith.”

    To which I responded, “Faith is a choice! Grace is out there, so why not choose to accept it?”

    And still I look at my strapping 7 year old and marvel that someone tried to convince me to have a test I didn’t want to find out something I wouldn’t care about, and in doing so risking miscarrying this amazing boy.

  18. MEA says:

    sueinithaca (& others)

    Have you read Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul A. Offit, M.D?

    Among other things, an eye opening look at how society views children is autism (and other conditions) as “damaged, destroyed, souless.”

    MEA

  19. grace says:

    sueinithica…YES.
    Just yesterday I spoke with a friend of mine whose “variant” is autism/spectrum whatever. We met some 30+ years ago when I worked at the Adult Psych Hospital, University of Michigan as a nurse and she arrived as a “patient”. We
    became friends and have remained friends over long miles and long years. She is a gifted and independent woman now in her early 60′s. If you asked either of us what allowed/s her to continuously go forward in her life I am sure we would have the same answer…having made a few connections with people who truly appreciated and valued her as a person and as a friend. “Services” were useless and at times destructive.
    So as not to create an inaccurate image, her
    “varient” (love that choice of word) was at
    times significant. Our first exchange took place
    under a desk in the “community room” that she had determined to be the only safe spot and had created a barrier around her made of salt packets. She was finally able to avoid “services”.
    During the years that my kids were little, they would sometimes come into my room, wake me up and say “R is here. She’s twirling in the livingroom again and waking up the dog”. Sometimes they would twirl with her.
    grace
    N.Mex

  20. [...] Casaubon’s Book » Blog Archive » Making a Future for the Disabled: Facing Hard Times With Specia… 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.” [...]

  21. MEA says:

    one nice thing about knowing you’re going to have a special needs child, though, is that you can started finding out about the condition, what early intervention is available in your area, etc.

    I think it must be very hard for people for whom appearences is everthing, or who feel they are judged by the children, or have invested their ego in how their offspring turn out, to suddenly be confronted with something that that assumed could never happen to them. (And even worse for people who believe that “bad’ things only happen to those to deserve them.) They have a whole ‘nother set of issues to deal with.

    One thing I found very intresting when my younger daughter went to thearapudic playground and the parents (read mothers) had a support meeting with a social worker, was that (by and large) the mother’s who worried most about how their children were and would be percieved by their peers and their extended families were the ones whose children were — sorry if this is offense but sometimes it’s hard to find the right words — least different from typically developing children. The woman’s whose some had (far as she and the rest of us knew) minor speech delays, worried more about how this would effect his chances of getting into a good college than rest of us seemed to worry about our children’s placement in preschools collectively.

    And that same sort of thing seems to be happening to me now in that I just can’t worry to much about the long term right now: I’ve done what I can; I’m doing what I can do; and the day to day stuff just takes piority.

    MEA (who, it seems, can’t shut up today)

  22. Lance says:

    How about families and communities who will be dealing with more and more mentally ill wandering about? Those people who couldn’t mentally and emotionally adjust to the new realities of changing society, and those already mentally ill people who can’t afford their meds anymore?

  23. grace says:

    Lance, like mea, I seem suddenly chatty today, but then these are issues close to my heart.
    Maybe then, the mentally ill will just be free to
    wander about and maybe we will need to meet them on a different ground instead of needing them to eat chemicals that make them less
    frightening to us. Again, after 17 years experience in working in mental health with acutely “ill” persons, what seemed to be most
    important is to meet each individual on a common ground. To honor and respect them for who they are including their “variances”…oh I just love that word.
    I have a nephew in Minnesota who is extremely
    concerned about all the things in Casaubon’s Book. He is only 22. He talks about these things with anyone who will listen, very few, and
    carries upon his young back the diagnosis of
    schizophrenic. When he is being “compliant” with
    the suggestions of his Community Mental Health
    workers, he is medicated and quiet. When
    uncompliant, he is concerned for the well being
    of the Planet. His father, my brother, tries to
    take him as often as possible to Red Lake
    Reservation where he is able to “be himself”.
    His mother’s family who seem to be more
    “compliant” have suicide as an option.
    So, we’ll see.
    grace
    N.M.

  24. grace says:

    funny how it goes…
    Just got an email from the most unlikely source with a link to
    You Tube
    type in Free Hugs Campaign music by
    sick puppies
    This would be my nephew when uncompliant.
    I should add, his name is Charlie. (LIKE the
    person in this video…tho, not)

  25. tarynkay says:

    I love this post. The routine, assumed abortions of disabled babies has always smacked of eugenics to me. And I hate eugenics more than anything else.

    It is true that disabled children may need a lifetime of care. However, my parents are still taking care of my 25-year-old brother and my 32-year-old sister. Both of my siblings are able bodied and both of them have IQs over 130. I have the lowest IQ of the three of us and am the only one who is completely independent of my parents. I have a cousin with Down’s Syndrome who lives on her own and my siblings can’t manage it. Helping to care for them has necessarily become part of my future planning. There is no prenatal test on earth that could have revealed this to my parents.

    On the subject of the mentally ill wandering free- they already are. A huge percentage of homeless people are mentally ill- here’s a link on the subject http://www.psychlaws.org/generalResources/fact11.htm
    I believe it has been this way since the Reagan administration started shutting down mental hospitals, but I am not sure on the history. I hate the idea of mentally ill people being restrained in institutions, but I also hate the idea of mentally ill people eating out of garbage cans. I don’t know how we fix this.

  26. Greenpa says:

    Whining is a sacrament? lol! I’ve got several Jewish friends I’ve GOT to run that by. I guarantee I’ll be telling them where I got it. :-)

    On a very different subject- how do you write these long, well connected, posts? Do you sit down and outline it first, or does it just come out this way, or do you edit it extensively?

    Inquiring minds want to know.

    Solid post, by the way.

  27. madison says:

    My son is half deaf. He hears maybe 5% in his right ear. He is also ADHD and has one birth defect. He’s wild, fun, overly emotional and a blessing :)

  28. sueinithaca says:

    @ MEA

    Thanks for the book recommendation. I’m heading to the library in a couple of days and will look for it. I haven’t read much beyond the initial research into what diagnostic criteria we fit into – I saw “we” because it’s pretty clear that my child gets this from me. In fact, I resisted having her evaluated for about a year because she’s SO much like me (and like I was as a child) that I couldn’t imagine that anything was “wrong.” She’s just more interesting than the other kids.

  29. Fern says:

    Mental institutions started being closed in the 1960′s, as part of an over-all change to deinstitutionalization and a new focus on local community care. Funds for local community care were cut under Reagan.

  30. BoysMom says:

    I don’t know much about these sorts of issues. What I do know is we have a number of children with issues of various sorts ranging through physical, emotional, developmental, intellectual, in our homeschool group. I don’t know how much support the parents of the teens get–they seem to be more the support givers–but the parents of the younger children have said many times how much it helps to be around parents that have been there even if it’s a different issue.
    I think people are going to need local support groups, and maybe there’s not much on the surface in common between a kid who is severely autistic and one with purely physical issues, but the emotional support the parents need seems to be much the same. Support groups could also help retain knowledge, information about how to do therapy routines, teach skills, and so on that others might need, in the community.

  31. Waaaaay good post.

    Our 25 year old has Asperger’s; he lives alone but we probably spend 20 hours a week on him still; today, for example, I took him to the dentist. Medical appointments are one of the hardest things for him. He has a food card, SSI and section 8, and says he realizes that when these go away, he’ll be moving back in with us.

    We look forward to that; he’s good company, very wise, and an outstanding gardener — currently works in a food bank garden. Also has a wry sense of ironic humor that I haven’t seen much of in other young men with his condition.

    He also has profound dyslexia, which has caused him sorrow, as he regards books as holy, having been read to throughout his childhood; but when he discovered his Mac could read to him the entire Internet became his back yard. I walk in, ask him what he’s been reading: “The history of China.” “Cool! Tell me about it.” And he reels it all off. One of those photographic memories.

    He has his ways, which cause strangers to widen their eyes and back away, but to us he’s just another family member. It’s actually hard to think of ways we’ve adapted, because they are so ingrained.

    He tells me that “normals” miss out on a lot by assuming he has nothing to contribute. “I’m not less than they are; I’m just some other thing. And variation makes possible a future for any species.” (Yes, he reads Darwin, too.)

    I have often thought that after the apocalypse he’ll be even more of a contributor than he is now. He’d have fit in, in his way, to village life or tribal societies — Samoa, or among the Inuit — far better than I, as he has so little stake in our world that runs on commercials and clocks.

    These young people have a lot to teach, and as things keep sliding off the “civilization” cliff, we might do well to listen.

  32. Amy says:

    I just wanted to tell you how much I laughed at your description of Eli and the snow pants and boots. My oldest is 15 and has down syndrome. He too will squeeze himself into anything he likes and frequently wears the wrong season clothes. I also share in your delight of his getting what he needed to go outside.

    I spend a lot of time talking to mom’s who have had those prenatal tests and are trying to come to terms with the possible results. We didn’t know of our son’s diagnosis until after he was born. We had plenty of time to get him everything he needed. And I had a joyous pregnancy.

    I personally loved number 5. We have spent his life remembering he is part of a family not the center of it. And sometimes what is best for the whole isn’t everything for the one.

  33. Mia says:

    Thanks for the post Sharon. Did you know that 95% of the people who get a prenatal diagnosis of Down Syndrome decide to abort? Who knows, if I’d done the test maybe I would have had an abortion also. But luckily I didn’t and instead I got the most fantastically beautiful and cute baby boy who happens to have Down Syndrome. We shed a lot of tears after we found out, mourning the loss of the “perfect” baby we had expected– but now , a year later, we’ve gotten used to having a kitten instead of a puppy, to use Sharon’s analogy– and we wouldn’t want it any other way.

    As for the Collapse of our Civilization– well, I worry about my other non-disabled child’s future just as much. I feel in my heart that my baby is such a loving and beautiful person that that will help him, even if he won’t have the capability to run the family farm or fix the tractor (or whatever we’re using by then). I have to hope that, believe in that anyway– we are in for such a wild ride there is just no way of predicting what will happen. But I do worry about his extra vulnerability too– of course I do.

    I take him out to all the baby groups and story hours. I want everyone in this small community to get to know him now– while he is a cute baby. That way, he won’t seem strange or disabled to them as he grows up– he will just be himself, a member of the community.

  34. Bess says:

    Hi Fern,

    Oops — Sorry — I didn’t mean to make that post about the scleral lenses anonomously. Anyway, I hope that they can work for your son. Good luck!

  35. Beth says:

    Sharon,
    Thank you so much for this post. I really appreciated your comments about amniocentesis and testing for disabilities. I’m pregnant with my first child and my husband and I just discussed those things this week. We decided to forgo all the available tests because whatever happens will be okay with us. We don’t even want to know the sex because to us it doesn’t matter. We are just excited to have a child, no matter what challenges it might bring.

    I grew up with two blind grandparents and I deal with special needs students every day in my high school classes. One of my students with autism has grown so much in the last few months and I’m excited to see her each day. All of these people have brought amazing joy into my life and I wouldn’t have wanted them any other way.

    On this same subject, there is a great movie called “Music Within” (I just saw it tonight) about the man who was most influential in getting the American with Disabilities Act passed. It shows how far we’ve come in the last 40 years here in the US.

  36. Steph says:

    My disabled kids look ‘normal’ and initially present as ‘normal’ but they are deeply not normal. They have fetal alcohol syndrome as well as a variety of other emotional and mental health issues common to people who have endured abusive birth families only to find that life in ‘the system’ is even worse. One of your points was “Don’t isolate them from the community”. that just scares me to death!!! Every time we have tried to let them out into the community to develop those ties, it has bitten us. Either the kids have been victimized or we have been reported to ‘authorities’ by people who have no idea what it is we’re dealing with but who are sure they could do a better job. The trauma of an investigation by those to whom my children refer as “The people takers” is in no way of help to them or me. I now have birth kids with post traumatic stress disorder from that. As someone who has been deeply disappointed by ‘services’, all I want now is to be left alone to run my life and assumed to be the best judge for the best interest of my kids. Much as I like the idea of a community, I will always cling fiercely to the right to opt out and fend for myself.

    We are currently experimenting with having a kid in a job training program away from home. Hopefully it will bring good results but she will still not likely be able to keep a full time job. If SSI dries up we will be her only option – as well as the only option for a few of the others. Knowing that, and knowing that even my neurotypical kids will need help, this is the plan we’ve developed:

    1 Move- We are in a situation to do that although it does mean an additional $65K in debt now. That is our only debt of any sort and the job situation looks fairly stable compared to other industries. We’re going from a house in town to a bigger house designed for a pre-electric life on 30 acres with water access and a large woodlot. 2 barns. All income not absolutely required to sustain daily life will be split evenly between preparations and paying off the mortgage.

    2. Assume that we will all be living together- we’re building built-in or cupboard beds in several of the rooms so there is increased warmth as well as more privacy. See the current issue of “Mother Earth News” for plans. We’re insulating between walls for sound dampening. The first floor parlor will eventually be the entry into an apartment so that my parents- or maybe us- can be cared for without stairs being an issue yet still have some privacy and independence for both families. My 16 year old daughter has agreed that when she begins earning or is married, she will start to contribute and we will build a small two bedroom cabin on the property which will be hers until she has more kids home than I do and then we swap out. We will be in that house until it is no longer practical, at which time another kid can live there and we will move into the little apartment. In any economy, its a huge boost to young people to be able to begin their adult lives free from debt.

    3. Develop skills and business ideas that will thrive outside the ‘normal’ economy- one of my sons has had his language pathways fried in the prenatal pickling he got but is very good with his hands and with animals. We hope to be able to teach him to log with oxen or perhaps to make a living as a woodsman. Another daughter can’t relate to people but has a rapport with critters of all sorts. There must be a place for them and I can’t depend on the government or some unknown ‘others’ to make it- but I also cannot make them accept my direction. My husband brews, I sew, spin and knit and will learn to weave.

    4. Teach the concept of “He who does not work, does not eat” – we’ll be putting in square foot gardens, one 4×4 square per person to begin. Chickens, ducks, geese, sheep, and eventually cows and a hog or two.

    Steph

  37. Sharon,

    Thanks for writing on this very important subject. I haven’t seen this discussed anywhere yet.

    sueinithica,

    Thanks also for your words:

    “I fully understand that my child is extremely functional and possessed of a mild variant, but she does NOT need a cure. What she needs is respect, understanding, and the emotional and intellectual tools to help her navigate her world and reach her potential. Whatever we end up calling it, she is who she is and does not need to be cured of herself.”

    My son was diagnosed with Sensory Integration Dysfunction several years ago. He went through extensive physical therapy and supposedly was going to grow out of it; however, it’s gotten worse over the past year. We were trekking to the “big city” today, and it finally dawned on me that he will probably never drive. Oh, he may pass the driver’s test, but I myself don’t feel comfortable with him on the road. He doubles up and hides his eyes in his arms and hands when the sun is too bright, even though he’s wearing dark sunglasses. He jumps several inches when a semi passes us. I do worry about him since it’s almost a rite of passage for a teenage boy to be driving. (He’s almost 17). But I realize things could be a lot worse for him. I also realize that with his heightened sensitivity comes his ability to empathize. Plus, a lot of time he reads my mind, which is rather uncanny – lol. He really “reads” people well and has a pretty accurate sense about them.

    Anyway, I’m trying to get used to the “worsening” of his SID, and I really needed this post today and all these comments!

  38. Susan says:

    I once spoke with someone who had lived in India for a time; people who are paranoid, or who are otherwise not able to live in society normally, are still working if at all possible. For instance, the paranoid person is the night watchman — who better to keep an eye on your neighborhood than someone who is inherently suspicious??

    I know autism is much more common these days, yes from better diagnosis but I suspect also from increases in chemical contaminants in the environment. I do however think that it simply didn’t matter as much in a society that was not so verbally and visually stimulating/driven. I don’t know how soon this lower energy world will come but I don’t think it will be all bad when it gets here.

  39. BoysMom says:

    Steph, please, please don’t opt out of the community. Those of us with all ‘normal’ families don’t have any idea what you’re going through, or what it looks like, or what your children have and can contribute. Yes, I’m sure it’s tough, but I don’t know if your children are safe for my children to be around unless you tell me.
    I wouldn’t know if it were safe for one autistic teen in our homeschool group to hold my baby except that his mom said so. He can’t communicate effectively: he can barely talk understandably at all and he can only tell me things if he’s standing behind me. He can’t carry on a conversation at all, can’t make replies to questions and ask questions in return. Turns out he LOVES babies, he understands how to hold them safely and so on. How can I, someone who doesn’t know hardly anyone with these issues, know this if his parents don’t tell me? He can’t tell me: he can’t answer when I ask him if he knows how to hold a baby. I’m not sure if he understands anything I say to him because he can’t reply.
    You probably have to go with your kids wherever they go in the community, at least until everyone knows them and you, and I’m sure it’s hard. Please, for all of our sakes, keep trying.

  40. Elizabeth says:

    Great post. These concerns keep me awake at night as well. It’s partly because we have a child with Down Syndrome and also because we are responsible for her education: we’re homeschooling our daughter and her brother (after many wasted years in a poorly funded rural public school).

    As home-schoolers and parents, we want to make sure we’re focusing on the skills that our kids are going to need in the future — not just for independence but plain old survival. It’s hard being a parent in this day and age, when the future is a moving target. Should we teach them to become multilingual in order to compete in the global marketplace or to push a plow and milk the goats? Both perhaps.

  41. Shaunta says:

    My 15-year-old son has mild autism/Asperger’s. I recently took a year-long course in how to advocate for people with disabilities. The two most eye-opening lessons I learned were 1. I don’t have to apologize for my son anymore and 2. People First Language. It’s actually a law in my state. I don’t have an autistic son. I have a son, who has autism. You’d be surprised how much just changing the words changes your head.

    I’m a drug and alcohol counselor and yesterday the woman who does our drug testing sent out a mass email about how vaccinations are responsible for autism and that if I didn’t want my four-year-old to be like my son, I should stop vaccinating her immediately. I’ve heard this before, of course. But no one that knows me has ever tried to pull that on me before.

    It hurt on a couple of levels. This woman knows that my son has autism. Was she suggesting that by making sure he didn’t get small pox or the measles that I gave him autism?

    Was she suggesting that my son is such a horrible person that it would be better for your child to possibly die of polio or whooping cough than be like him?

    I know there are people who believe that vaccinations did cause their child’s autism. I’m not trying to start that debate. I just wanted to say that this post was nice to read today, because I’ve been thinking about this all day.

    I’ve heard what someone said about Indigo/Crystal children before. It’s a little New Age-y for me, too. But it does sort of ring true. I’ve noticed as Nick gets older that a big part of his difficulty comes not from himself, but from other people. He’s just so different. Maybe he did come wired for a different kind of world.

  42. Grey says:

    I have a sister, 16 years my junior, with Down’s Syndrome. Before my mother had left the hospital, she’d been visited by social workers and government employees who told her she didn’t need to keep the baby, that they would take her and she could forget she’d even had the child. Life could continue to be normal.

    My sister rarely speaks, and will spend her time on the couch, grinning, if someone doesn’t interact with her and remind her to get breakfast, to get dressed. My mother just IMed me and said she needed to get my sister out of bed (at 10am) because she won’t get up herself. She’s bored, and sighing, but she needs the prodding.

    She’s a sweet child. At 17, she has won numerous ribbons in equestrian show riding. She loves to hike, and she loves it when mom and dad decide it’s time to spend a few weeks in Nova Scotia.

    I’m not sure what the changes in the world will be, and what the challenges are that our family will face with her as she gets older, but she’s not a drag on the family – she’s part of it.

  43. GidsMom says:

    Sharon-
    Thanks so much for this post! Its a topic near and dear to so many. We have two boys with autism 8 & 4 and a 3 year old daughter. Our boys are so different! We call them the opposite autistics. My 8 year old is more classically autistic with very little language. While my 4 year old is mild/aspergers/anxiety/ADD sort of guy. As we transition to a lower energy lifestyle I see my children doing ok. Every occupational theripist we’ve seen has emphasized “Heavy Work” for both my guys. Ok, here hang these wet close, stack up the wood and afterwards they feel and act great. My 4 year old I could homeschool, but the support I get from the schools for my 8 year old would be sorely missed. I love those people! I’m blessed to have wonderful, caring teachers providing my child what he needs. If that funding is ever cut we do have some pretty passionate parents and we have been practicing adaptability for quite a while.

    I don’t mean to sound like its all rosey. When I see a typically developing 8 year old, I just can’t help but wonder….

    I agree with a previous post about very typically developing adults ending up living with parents and not able to cut it in the world. My 38 year old sister, plus her teenage sons live with my mother, because she is mentally unstable. Even when you have typical children you don’t know what is going to happen in the future an accident, addiction ect… Your kids are your kids, end of story. We love them for who they are and help them be the best they can be.

    At one point I thought my daughter was beginning to notice that her brothers were different so I said, “Are Gabe and Gideon different?” because I thought she may want to talk about it. She said, “Ya” and rolled her eyes “they’re boys”. I love those kids.

  44. Sharon says:

    Steph, I just want to say that I’m sorry for all that’s happened to you, I think your plans sound quite wonderful, and that like BoysMom, I hope you won’t give up on the community thing, even at a small scale. It is hard, and I don’t blame you for your response, but I hope you can find better.

    Thanks everyone, for all the wonderful responses!

    Sharon

  45. Gen says:

    Sharon:
    Enjoyed your post. As the mom of a special needs child, I understand the need to become self-sufficient in this area of our lives as well. We don’t rely on ‘services’ very much. We were fortunate to know people who were willing to help us in the areas she needed–speech, OT, PT. As she ages, she needs them less.
    We are middle income enough not to qualify for ‘services’ and could only pay out of pocket monthly for these helps. But those kind teachers taught us, encouraged us, and assessed how we were doing the next time we saw them. We would pay for an hour of their time, and they would teach us, encourage us, and give us ‘homework’ to last us through until the next 2 week or monthly visit.
    That has been our model for her life–learn from the experts, and carry it on in our own home. It has worked for us.
    She has been a joy. Someone once sent me the story “Welcome To Holland” by Emily Kingsley. That philosphy hits it pretty closely on how I felt about this special needs beautiful person joining our family.
    You only learn some things when you have to. Just like I now am going to learn about saving seeds, as I think it will serve me well in the future, I once learned about our daughter’s special needs. It, too, has served me well.

  46. Debbie says:

    Sharon,

    Thank you for the wonderful article. As a parent of a 6 year old daughter with Autism Spectrum Disorders, I have long said that you have to celebrate the “little victories”. Early on, I would always be appreciative and happy of the my daughters accomplishments, but in the back of my mind there was always the nagging voice saying “we have SO far to go”. I am happy to say, that I take every milestone, little or big, with GREAT joy. No nagging voice. My epiphany when we went to her IEP meeting at school and they read all of the goals she had accomplished in the last year. When her teacher said what a joy she was to have in her class and how well she was doing both socially and academically, I could have started to cry. What a difference from the comments from her teacher last year.

    I took a step back and really thought about what a different child she is from just 12 months ago. There wasn’t 1 big change or turnaround, but little victories along the way and I am SO grateful and celebrate each and every one of them!

  47. Sharon,

    I’m the Mom to a medically fragile child who also happens to have an extra chromosome.

    I also am the managing editor of 5 Minutes for Special Needs. {http://www.5minutesforspecialneeds.com}

    I can’t begin to tell you of the hours I spend in worry about this very subject. Many of us are already looking at this situation as our insurance bottoms out. There are quite a few drugs my son is on that Medicaid won’t cover. His most important drug, Tracleer, runs close to $2,000 dollars a month.

    When our private insurance runs out………..then what?

    Add upcoming economy issues, and well screwed is a good way to describe how we are feeling.

    We did scrape together the money to purchase a generator so that we could keep our son’s oxygen concentrator going in case of an emergency.

    I am very open about my willingness to accept any no longer needed medical supplies: trachs, trach ties, trach noses, g-tube supplies that others may no longer need. I am trying to stockpile these with the same importance as we are putting food by.

    I am slowly weaning my son off of a $200.00 a box formula (a THREE box a week habit) to being able to use table food via his g-tube. We can just now start doing this as his colostomy has been reversed and his bowels are showing that they do indeed work.

    This step would allow me to be able to try and insure an ongoing food supply for Parker.

    I’m not above accepting offers of no longer needed Tracleer. My research shows that this drug doesn’t go bad, but instead loses strength. If nothing else I could put this drug back in case of a severe emergency.

    Would I do this in a normal situation. Nope. But I wouldn’t consider keeping my child alive in an emergency a normal situation.

    These steps won’t totally take care of my son. But they are the best ideas I have been able to come up with so far.

    I’d love to see more thoughts addressing this topic, but on a bit deeper level than simply community services and education. For many of us the advice to try and attain a year’s supply of meds isn’t feasible. Especially families who rely solely on Medicaid. They want to keep their kid alive too.

    Thanks for all you do,

    Tammy and Parker
    http://www.prayingforparker.com

  48. Steph says:

    BoysMom,

    You know those people you meet out and about who can’t quite seem to keep it together, who sometimes seem to just not be too bright? They seem so sweet but they will just lie to your face (although you would never believe it of them until you’ve known them for quite a while)? They might well have fetal alcohol syndrome. Although there is certainly much more education out there than there was 30 years back, we are going to see more of it as people react to stress and disappointment by reaching for the bottle. This will be one of the most grievous losses of the many that we, as a society, face.

    Considering how well they manage to function with IQs in the 60′s, I imagine what could have been theirs if their birth mothers had simply put down the bottle. The literature about FAS offers little to no hope for a positive outcome. When they were younger, I refused to believe that would be our fate. I was sure that with enough help and enough interventions, we could tell a story full of sunshine and roses. I was wrong. There is no cure, there is no treatment, there is no medication, no talk therapy. There is prayer and there are few good options. I was revolted by it but I’m seeing the truth in the adage “The boys get locked up and the girls get knocked up”. They are so gullible. So angry at knowing they are different and not knowing how to change that. They have enough understanding of people to know how to lie or comply to make you happy in the short term but not really how to make folks happy in the long term. This is where the trouble starts.

    If you met my kids at a homeschool co-op, it would be perfectly safe for them to hold the baby or to play with the toddlers. It would never be safe for them to babysit. It would be safe for my son to split wood with a small hatchet with some supervision but it will never be safe for him to operate a chainsaw (he tried to stop my bosch stand mixer two days ago by sticking his hand into the blender base. He’s 11). My daughters could make you anything that they are already familiar with but one could not follow the directions on a Rice-a-roni box, especially if you needed four boxes made together. They can’t sequence. Yet they try so hard! If my 16 yo bio daughter worked half as hard she would be half way through her masters instead of half way through her bachelor’s. My 15 year old is finally going to move to 6th grade math this spring. If you meet a family with alcohol affected children (or adopted kids who seem a little..off) assume that developmental age is half of chronological age and don’t be concerned that my 15 year old wants to play with your 10 year old. And please don’t be appalled that their kids can’t read at 10, 11 or 12. We’ve found 15 to be a magical age for the maturity needed to master that skill – back to the half the chronological age thing.

    You’re right that I do have to buck up and keep being out there with them, in spite of my fears. There will be more and more of ‘them’ as things get worse and if I’m not advocating for my kids and the kids of other folks who either made mistakes at a critical gestational period or decided to contribute by adopting with all the love and optimism and best of intentions, who will be?

    I know that I will need my community and they will need me. Perhaps with a little more space (1/3 of an acre in town proved to be a poor choice with 7 kids and 2 big dogs) and a more tolerant community mindset I’ll be able to join in more and opt out less. For much more interesting reading on life with emotionally and neurologically different kids : http://thebodiebunch.blogspot.com/

    Steph

  49. Kate in CT says:

    Thanks for this post, Sharon. Our 17 yr. old son has type 1 diabetes (since 18 mo.) and Duchenne muscular dystrophy(diagnosed at 5 yrs old). How can one plan for a low energy world for a young adult with these challenges? Years ago we too made the decision that his health and “fixing”it would not dominate our lives. We would address the needed medical care and equipement, and then enjoy each other and live the rest of the time. I’m glad we made that choice and know that he is a happier person today for it. I have come to the conclusion that this is probably the only way I can approach a future where there might not be electricity for his wheelchair, bed, lift, or computer or there may be shortages of medicines. Do what we can (which is actually quite a bit as you remind in your post)and then live. (And try really, really hard not to worry:-)).
    Believe me, I have had many days when I felt i could not deal with the responsibility of keeping him alive every day. But i have had many, many more days when I was simply happy I could. 100 yrs ago, we would not have had this amazing person with us this long.
    Also, “Welcome to Holland” helped me some years ago. I just read it again and teared up…again.
    Warm Wishes

  50. Sharon says:

    Steph, my niece has some alcohol involvement issues – she was adopted from Vietnam, so her full history is not known, but the “half the age” information sounds about right. I really appreciate your saying that, actually – I’m going to pass that on to her Mom.

    Sharon

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