Autism and Down Syndrome

The special needs world is fragile, easily shattered, and it takes a tremendously strong person to weather the twists, turns, and curved balls that come with that fragility. 

You live for the most part contented, happily thinking you can conquer the world, and two seconds later--when the pharmacist looks at you and says, this medication is not covered, your son's Medicaid has been suspended, or when a care taker calls and says "I can't pick up Ben today"--panic washes over you, and you are convinced that this interminable juggle of dependent care, work, and illnesses is thoroughly beyond you, and that the Almighty's infinite wisdom failed Him, when he gave this child to you to parent.

And yet, isn't he adorable??

Then one day you wake up to an added reality. You notice that professionals, over time, more and more start hinting at you that your son "may" be on "the spectrum". 

Is he? 

Hmmmmm? 

You are a seasoned mom and you have had more diagnoses slung about you and your son than there are grains of sand on the beach. No panic there. It's just another label.

But, the seed has been planted, and you do start to  look for a few signs. 

One day you convince yourself that yes, with this and that behavior, he probably is mildly autistic, the next day because of his emphatic and mature reaction to one minor disappointment, you convince yourself that he could not POSSIBLY be autistic. 

Then the busyness of life overcomes any concern for such trifles as sticking a new label on the specimen that your son so often has become... in fact, the thought of autism, Down's, dysphagia, and the numerous medical conditions that continuously plague him... who cares?? You have other fish to fry. He needs to get in for that dental cleaning, rehab needs to fit him for new braces for his feet, you missed the orthodontic appointment because of traffic last week, and of course, you never rescheduled opthalmology when the doctor canceled the appointment because she broke her leg skiing. Also, your son needs a new glasses prescription... and wait!!!... when WAS the last time you took him to audiology and had his hearing aids serviced?

Autism --- it's a good question. 

There is no doubt in your mind that his emotional trips, every time his routine is broken, every time people laugh around him, every time certain persons go near him ... those emotional trips are time-consuming, you have no real means for curbing them or helping him cope, but you kind of got used to them, that is just him, and really, rehab, ophthalmology, orthodontics, to say nothing of that annual orthopedic Down's eval that you forgot last year... those things come first.

No, I am not a procrastinator, at least I put off thinking that I am one :), and I am fairly organized and on top of my son's diagnoses and appointments most of the time. He functions well --some of the time-- and he has severe behavioral issues at other times. SEVERE. Like the day he darted out of the house into traffic... in a rage... unstoppable. He sometimes hides from people, like at Thanksgiving when he hid in the pitch dark, behind a wood shed at a friend's house, and we had to send a search party out to look for him. 

 Autism may well be the next bend our in road. Increasingly, it feels and seems real enough. And if it is, let's just embrace it and move with it.

He has many risk factors. For example, he was born with cleft lip and palate, he has a swallowing disorder, he is hearing impaired, in short, his communication skills, both receptively and in terms of his own output are limited. He has experienced some stress and trauma in his life.  And he does have  significant repetitive motor behaviors, unusual vocalizations (usually grunting and throaty noises), feeding issues and sensory motor issues, as well as increased anxiety, irritability, severe difficulty with transitions. He has an extreme aversion to certain persons and will not even talk to them. He talks to walls and refuses to engage people or make eye contact any time there is even the smallest conflict (whether it involves him or not). And he repetitively generates calendars through 2014, 2015, 2016, 2017 for a hobby in most of his spare time.

And if it be so, if the label autistic is about to be slapped on his forehead, so be it. Whatever he is, that is him, and that is precious and worth cherishing, and if the behaviors we already live with are mildly or moderately autistic, then let us embrace the label and pray that it will lead us to discoveries that help us increase Ben's potential to live a fulfilling life and function better in the company of others.

Merry Christmas :) We're on to our next journey in life, wherever that takes us. May God go with us.

2014 with Ben

... and what a year it has been. I have had to ask Ben to promise me never to turn 18 again. (And he agreed.)

Ben is a junior in high school, an accomplished artist, both in graphic arts and in pottery. He loves to hate the frustrations of bowling without bumpers, he adores his iPad 4--especially its movie feature, and this year he fell in love with Despicable Me I and II and the Minions that go with it. 

So much of what went into Ben turning 18 was 'about' Ben, and about the services he is to receive, first as a young adult (18-21) but also about life long services and service levels that were established in the multiple meetings that he and I attended in order to determine which services he qualified for.

What was hard about the process, apart from the tiresome felling running a metaphorical marathon in chilled molasses, were the meetings that involved Ben. On four different occasions we met with persons from the county long-term disability intake people (IMAGINE!), the court visitor, and the social security administration, essentially to establish what Ben CANNOT do,  I understand the deficit model is a vehicle for establishing needs and subsequent services, but I regret Ben having to listen to a long line of questioning which one of necessity must answer as if it were the worst day of Ben's life in order to establish a life-time service level that will adequately meet his needs, even on the worst day of his life. 

Looking back, I should have brought ear buds and iPad (with movie + games) to the four intake interviews, so he would not have to sit and listen to litany after litany of what he cannot adequately do. I caught up to that fact at the last interview with the court visitor.

At each interview, he was required to be present, and since they were in close succession during the fall, I had a significant amount of emotional fall out to deal with from Ben after each process. 

Ben is generally "happy" exactly in the sense that we, the public, like to think about Down syndrome happiness. However, that general 'happiness' is surface and good social skills combined. It is difficult to have Down syndrome and know you are different, and to hear the deficit model applied to who you are and what you can do and how you are when you are at your very worst behavior, at your least competent moment, and to hear it over and over again in 2 to 3 hour long meetings, discussed every time by your mom and two or three other professionals, some of whom you know from school can be crushing. 

That being lamented, we succeeded in securing long term care Medicaid services for Ben, both in terms of respite care after school and also in terms of day programs for the summer and for when Ben is done with school. Many triumphs came out of the August - December seemingly endless process of wading through state and federal services for Ben long term. Ben was a Level 6 (the highest in the state) in terms of his needs assessment, and he is awarded $36,000 of respite, day program, and behavioral health services per year towards meeting his needs.

Instead of me spending out of pocket cash to secure after school services for Ben so I can finish up at work, he will now be in Out and About as soon as their waiting list dwindles down, and that group takes persons with intellectual disabilities 'out and about' in the afternoons after school, to swimming, art, theatre, and bowling.

He will also be in FRIENDS OF BROOMFIELD during the summer for a 9-3 day program where he can take Access-a-Ride  (public bus for special needs) to the day program, so he will get a sense of independence in going on his own and coming home on his own. 

At any rate, the end of a long semester, and  I have a significant part of the year of turning 18 moving in the right direction. 

I look to 2015 to 
1. finalize his SSI and actually getting that income for him
2. getting a court date and finishing my case to get guardianship for him
3. getting off the waitlist for Out and About and having those neat afternoon experiences for him after school
4. getting a comprehensive eval of Ben and the autistic spectrum issues.

Merry Christmas :)

Turning 18

Ben turned 18 in September, and the list of paperwork to take care of since then as been staggering and it is far from over.

I am hoping that this laundry list of things to do might help someone else who is not quite where I am yet. And for those of you who read this blog for entertainment or interest or awareness or out of sympathy... I wonder if you will make it to the end of it.

Before I go into details of my list, let me say a few words about fatigue related to expectations when it comes to special needs. It is not necessarily the processes or the applications for this or that that tire a person. Ben needs long term care, he needs medicaid, I need to have guardianship of him, and it would be really nice if he gets Supplemental Security Income. All those things are GOOD once they are in place. -- I think for me it's accepting the reality of all the things that Ben cannot do and never will do (now that he is 18) combined with a life long expectation (from the time I was probably 12) that once my kids were all out of the nest, I would be done with all the caring for and providing for persons, and actually more autonomously looking towards another 15-20 years of work and then a comfortable retirement with travel and interesting things to do before ending life.

The prospect of having a person to care for ever, always, until one dies can feel daunting. And I am not saying it to get sympathy or to complain, but simply because this territory is unknown, one is getting older and more easily tired, and the 'endless school summer vacation' that is in store for Ben as he finishes high school feels both scary and tiresome... and I am not even really in it yet.

Looking at Ben as a dependent is something one can accept because I see daily all the things he cannot do for himself. I cannot even describe the process of guardianship to him in any way that he could possibly understand the concept of filing papers with the court, let alone what responsibility for him entails, or what it means for me in terms of authority if I do not have that guardianship. All those concepts are forever beyond him. --- Heck, I cannot even drop him off across the street from school and let him cross the street on his own since he is not aware enough to cross a residential street with care. He cannot be trusted with a house key, he can never be home alone, not even for a short time. I have tried it, and if I am gone 5 minutes, there is no telling where he might be when I return.

Now, I have to do the following for him now that he has turned 18 (in addition to the usual stuff I do, including doctors and orthodontics appointments, taking him to school, providing care for him any time I am not with him.)

1. Apply for guardianship for Ben
2. Apply for medicaid for Ben
3. Apply for Supplemental Security Income for Ben
4. Finish process of getting long term custodial care Medicaid Waiver for Ben (He is approved, but the meetings and the processing of all the info is a long trip yet to be completed)

The goal is that by next March or so I should be done with all the paperwork, meetings, petitions, etc and should be settling down to 3 reports per year to 3 different authorities who have to hear annually from me on how Ben is doing.

Guardianship

Many of us with children who are developmentally disabled need guardianship or some arrangement of authority of our kids after they turn 18. Techincally, once they are 18 they are autonomous, and where I have run into issues (and it's only been 1 month) is in getting access to his records (medical, school, SSI application, ANYTHING!) If there is no permission from Ben on record, saying I can look at his stuff, I just can't.

I paid $125 to go to a class to learn how to file for guardianship. I figured it was cheaper than an attorney, and it came recommended from many sources. As it turned out, it was a waste of money, first of all because the lady who was giving the 3 hour seminar was 1 hour late and talked really fast to cover 3 hours worth of materials in 2 hours. Secondly because the material is readily available on the state web site with a clearer 'how to' instruction set than what the Guardianship Alliance provided in their 2 hour (3 hour) talk.

State of Colorado, Probate Forms - scroll down for guardianship

In addition, I have paid $164 to the court to file, and I expect to pay another $300 or so for a court visitor to come to my home in the next month or so to inspect me and my home to make sure it is a suitable place for Ben to live in.

I will write more after the hearing in the Probate Court, which I am waiting for the court to call me back to schedule.

Medicaid

Ben qualifies for Medicaid at 18, ... the kind of medicaid that is for health insurance. However, it takes 2-3 months to process (thanks to the Federal Government of the United States, it is impossible to apply so the Medicaid is in effect on his 18th birthday. You apply after his birthday, usually in conjunction with Supplemental Security Income and the process requires an in person interview, letters from doctors, etc.  It is a chore to pull together the documentation for this to fall into place.

Apply for medicaid here.

Long-term Care

Long-term care is care for Ben after he is done with school (when the eternal summer vacation sets in), and I still have to go to work. He has been offered two different waivers by the state of Colorado, one for his physical disabilities and also one for persons with developmental disabilities. We will go with the latter since I need custodial care more than I need a nurse in the home to care for his physical disabilities.

Next week we are doing the SIS evaluation for the long term care. It is a 2-4 hour question and answer assessment meeting where I go with Ben and as many persons as I want along to help assess, to the county intake office to sit and answer a seemingly interminable list of questions about every possible need he might have. This link explains it.
Supports Intensive Scale

This assessment is done once for all and is in place in Colorado for him until he dies. It is extrememly important that this assessment be done well and be done properly. The hints I get is 'think of his very worst day' and answer according to that. Once the SIS number defines the 'level of need' he has, that establishes how much money the state will cough up for him each year, and that is the money that will be used annually for his long term care .

After the SIS assessment, IF the Medicaid has been approved (2-3 months, remember??) we do an assessment that determines what his actual daily needs are for custodial care, and then we contact service providers which will get paid directly by the state (not by me) to do the care taking of Ben. That might involve a day program that is somewhat academic on some days, it might involve some supported employment on other days. And on some days it may simply involve someone coming to the home to watch Ben if I am away. -- What I hear from other people is that it is difficult, even with the long term care waiver, to find providers who will work for the wages that the state offers on its long term care waiver. I have yet to test that for myself, so we shall see what it looks like in the spring when all is approved and we are selecting service providers.

Once that is in place (waiver come through, paperwork filed, service providers selected), I have to file paperwork each year for an annual eval for long term care to make sure that the services in place work for him each year.

Ben  might get comprehensive long term care (some group home where he lives apart from me) when he is closer to 40 (he is on the wait list for that) at which point I might be of an age where I can no longer take care of him myself, or where I don't want to. ... or not, who knows?

All this takes a tremendous amount of time, and funny enough, all these state and federal agencies, while they speak well enough with each other to know whether Ben has been approved for Medicaid health care, they don't speak well enough to each other to share any other document, so filing something in one place does not at all mean that it is accessible to anyone else.

I am deeply grateful, I should say as I end, that he has long term care. Just a year ago, the waiting list for long term care was 7 years or so, and this year it is whittled away as more money has been allocated to take care of the developmentally disabled in Colorado. That is wonderful.

What isn't quite as wonderful is the combination of endless summer vacation and endless paperwork ahead, along with the endless dependent care. I do confess that somewhere in my little brain of much fluff, the hardest thing to adjust to is knowing that one will always have a dependent.

Now, I will end with this very different thought. Ben is very definitely a dependent, and through no fault of his own he CANNOT take care of himself, and I am happy to do so. But as I have matured over the years in my 'growing up' with Ben, I find myself very narrowminded and intolerant of fully grown adults of normal intelligence who have made themselves dependent on either other people who support them financially or on the government.  It has been such a battle to get for Ben what Ben needs, and yet Ben has such a drive for independence in him and such a desire to do things for himself. For example this morning, he put on shoes with laces and rather than wait around for me to tie them, he spent about 10 minutes trying to arrange the laces in such a way that he did not need me to tie them for him (becaus he really cannot tie shoes himself). -- He TRIES so hard, and he works so hard to not have to ask... and I think, if  little man like Ben can so much try not to bother others and not to lean on others when he has so obvious needs, it seems shameful to me that some of us adults have grown up in a spirit of dependency, never emancipating ourselves fully, always dependent on someone else to pay, to get us out of whatever messes we have gotten ourselves into. What a waste of ability and good intelligence when someone like Ben would have been so happy to have had those abilities but just had the misfortune not to be born with them.

JUST LIKE US?

Persons with Down's are 'Just like us', yes... and no. 

In the past 40 years, since we stopped institutionalizing persons with Down's and started educating them, they live on the average 30 years longer than they used to, and they have on the average increased their IQs by 20 percent because we started allowing persons with Down's into the public schools. Those are marvelous strides, and I think the 'just like us' strategy has worked well to bring this about.

In other ways NOT just like us.  My daughter likes to shock her professors in college by saying stuff like "I can't meet then. I have to go home and get my 17 year old brother off the school bus". She enjoys the funny looks she gets, and she milks the awkward pause for all it's worth before explaining the situation. Once explained, the professor understands. A person with an IQ somewhere between 40 and 65 is not 'just like the rest of us'. It is a person who can learn to live with support. It is a person--in the case of my son--who does not have the judgment to get off the bus, walk home, and stay at home alone. It is a person who should be respected and loved, but it is also a person who needs a guardian, who needs to be protected for his own good, physically, emotionally, financially, etc. And that is precisely why persons with Down's are 'not exactly like us in all respects'. 

A lot is written about Down Syndrome and childhood, and many cute pictures of adorable babies are posted, as different parents, teachers, schools, associations and advocates tell us how these individuals are 'just like us'. I agree. All persons with Down Syndrome are first and foremost human beings. They can be sweet, they can be stubborn, they get angry, they like to play games, they do sports, they love their families and friends, etc.  

However, whenever we self-consciously try to convince ourselves that these persons with Down's are 'just like us', the effort we have to muster to be  convincing is the proof that they are NOT 'just like us' in all respects. If they were, nobody would need any convincing.

Chromosomally, persons with Down syndrome have an extra chromosome on pair 21. In short, it is a miracle in a lot of respects that persons who have Down Syndrome live and function and are as normal as they are, given that in every heart cell, in every kidney cell, in every skin cell, indeed in every single hair on their heads, their genetic make up is different from that of typical human beings. They have 47 chromosomes in every cell, and typical human beings have only 46. Down syndrome is genetically amazing! Or at least, it is amazing that you can have that much genetic material present without having more differences between those with 46 and those with 47.

But before I get carried away with the scientific wonder of the situation, let's get back to the topic "just like us". I do want to minimize the differences in terms of people's humanity and people's rights to be treated equitably, and I do want to help stop discrimination against Down syndrome whenever possible, so I don't want to highlight the differences with the aim of making discrimination worse.  

What I will say though is that there are enough differences that it is a task to raise a kid with Down's, and even when they are adults, they still need supervision and 'raising' where regular kids do not.

 I have 4 children who are now all adults. One has Down Syndrome, the other three do not. The three without Down's each have close to triple or more the IQ points that the person with Down's has.  At 18, all three kids without Down's were capable of moving out, driving cars, getting jobs, and going to college. The kid with Down's is not.

Clearly there are differences, and I think the current 'campaign' of showing the sameness, in some respects make society blind to the needs of parents of kids with Down's as well as those kids themselves as they grow. There are HUGE adult needs for persons with Down's, and when we play this 'just like us' game, we shoot ourselves in the foot, minimize the needs, and do not get the political clout and attention to deal with the issues that need to be brought to the forefront.

One comment I read was that a mother said she thought it was nothing to raise her 7 year old with Downs. After all, she had a teenage daughter who was much worse. Well, let me mourn with the mother who has the difficult teen daughter, since I have been blessed with teens that did not give me trouble. But let me also assure her that as her 7 year old with Down's grows into teen and adulthood, she will have many more issues to deal with IN EVERY RESPECT for her offspring with Downs--- many more problems than the average teenager will ever give her on her worst day. After all, you don't have to find a sitter for most 18 year olds when you want to go out for the evening. 

Another aspect of normalizing Down's that bothers me is that those pictures we see in magazines and books--in typical western world style--are almost always of the prettiest persons with Down's and most often they are pictures of very young kids with Downs. (The same way that we rarely see ugly or old women as news anchors in this country).   I just prefer pictures of real people -- all people -- not fashion models. All people are in essence beautiful for their humanity, so why do pictures in the media usually sport the young, the slim, the pretty? Truth is that most adolescents with Down syndrome are obese and struggle with their complexion. We hardly ever see obese persons on those poster-style pictures. It would be good to simply capture people as they really are rather than cater to our media-developed craving for 'beautiful people'. My son with Down's has an uneven face and he also has cleft lip and palate, hearing aids, and eye alignment issues. I still think he is beautiful, but not fashion - model beautiful. 


I will end with this blog, written by a mother of a child with special needs. I thought of it in light of 'not exactly just like us'... she has 10 reasons why she hates being a special needs mother and trust me, she is spot on with each one. Days like hers are not your typical mom's days. http://insidiousglamour.hubpages.com/hub/Top-Ten-Reasons-Why-I-Hate-Being-a-Special-Needs-Mother

My mantra on some days when I have had enough is "I SO did not sign up for this."  Yes, most days are a blessing, but even the days that are a blessing are a different sort of day, a different sort of work, a life most people don't live: flossing the braces on the teeth of your 18 year old, shaving your 18 year old, checking his underwear and sending him back to his room because he is wearing 4 pair on top of each other under his jeans (don't ask me, I have no idea why), checking his backpack before he leaves the house to make sure he didn't take something from someone's room, checking his wallet that he did not take any extra money from someone, reminding him to be good and not grumpy. Checking feet for blisters from the leg supports at night, rehearsing every morning how his day will go, so he is not surprised and goes into uncooperative mode because he did not expect the new thing he does not want to do, securing a sitter for night meetings at work, scheduling and attending 2-4 doctor's appointments per month.  Hooking your kid up to Oxygen at night...  explaining YET to another person at church what your child is capable of, and why he does not behave as that particular individual would like him to, etc. 

Judgment

Don't judge, lest you be judged. 

Perhaps that is what my title inspires you to think. Perhaps not.  

This is a blog about special needs, and it is in that light that I write about judgment. 

We all know that my judgment about what it is right for my child to do and how much risk he is allowed to assume and how soon he may mow the grass in the backyard on his own, is not going to be yours. Thank God for that! I am free, and therefore I am free to judge myself, my own actions, and my future plans.

What I am talking about in this blog is two aspects of judgment: 

1. the judgment that others pass on persons with special needs 

2. the judgment that persons with developmental disabilities have (or as is often the case, do not have).

Judgment, however bad a rep it gets in society when misapplied, is an essential skill in life. I need to be able to judge not only how long it will take me to get up in the morning, get dressed, eat, get my kids off to school, and drive to work, but I also need to be able to judge how much longer it will take me to get to work on a given day, given errands I have to run, weather conditions, and so forth. 

I am constantly exercising judgment when I decide how much and what I want to eat or buy or watch. I judge how late I want to go to bed, how much entertainment, exercise, and work I want to engage in daily/weekly/monthly in order to live the life I think is good for me to life. I make those same judgments on the parts of my minor children.  And then they grow up and they have to judge for themselves how to live.

I exercise judgment when I decide not to share a piece of news with a person who in my opinion is not privy to this information. I exercise judgment when I email a colleague at work to inquire what happened to our joint letter, which I sent him two weeks ago, but which he has yet to send back to me. I judge what to say, how to say it, when to say it, and by which medium to send the communication.

You get my point. 

We exercise judgment all the time, both in routine events that are not so hard to decide about, as well as in delicate situations that require forethought, consideration, seeing the other person's point of view, as well as in situations where we have other persons' welfare in our hands and can hire and fire them. 

JUDGMENT IS AN ESSENTIAL SKILL in a life successfully lived. Many folks live miserably because of failed judgments they made.

Judgment--lack of sound judgment-- is the sole, most important, most difficult sticky point with a person with developmental disabilities. 

[Note that when society says that someone is 'developmentally disabled' the label refers to the person's intellect only, not to any physical impairments he or she might have. So a developmentally disabled person is -- to put it in a good oldfashioned no-longer-acceptable words, retarded. In other words, low IQ. ]

Judgment is not forthcoming in great quantity in persons with low IQ. They simply are not capable of looking at all the aspects of a situation, seeing all the nuances and making a strong and wise decision. And that lack of judgment is both wonderful in that it allows them to be guileless, innocent and forthright. But it also gets them into big trouble on every front, with every family member, stranger, and friend as well as foe. AND THEY CANNOT HELP IT!

This summer both of Ben's brothers came home for a 3-4 week stretch each (not at the same time.) Each brother is military, and each brother stays in the lower bunk in Ben's room when he is home. They both tend to come home, dump their sea bags on the floor and they don't care too much about the messes they create while home, partially because we don't have much room, so there is not much room for them to store their stuff in, partly because they don't mind being slobs while they are home.

Well, during both visits, IN FACT at several points during EACH visit, I would suddenly hear an older brother's voice of panic: "Oh no! BEN!! You cleaned the room." You see, Ben likes his room reasonably neat, and when someone else makes a mess in what is his territory, he does not really have the verbal skills to articulate his need for order, so once a brother would be out for an evening, Ben would take that time to organize that brother's stuff. This resulted in long interrogations of : where did you put my computer mouse? Where are my keys? Where did you put my book? Where is my flash drive? etc.  Some of these, Ben was able to answer. In other cases you simply had to think logically of where Ben most likely would have put stuff, and in other cases again, the stuff was simply lost. Oh well!!

Almost every case of Ben's lack of complete common sense judgment on an issue goes like that. Good intentions - Bad judgment. There is a reason for everything Ben does, but he is not capable of keeping the entire picture in mind. 

Of course, I won't embarrass anyone with my story about the vegetable section at the grocery store recently :) . Those of us who live with Ben have learned to laugh in spite of other people's shocking outrage at some of the things Ben has said or done in public from time to time.

Ben's intentions are usually good, but he is also lacking in judgment when it comes to moods. He can be  grumpy, especially when -- as was the case this morning -- he doesn't get to go where he was planning, hoping, or used to going on a particular day.  This morning the usual destination would have been church, but Ben's brother was flying back to Annapolis, hence, a trip to the airport was in the cards instead. Ben was grumpy, and when grumpy his mood may randomly spill out on persons, we  meet. Ben will refuse to greet someone or refusing to comply with requests they make of him. When Ben is grumpy, he feels it, he thinks the whole world feels the same way, and he does not differentiate as to who suffers from his ill humor. Thankfully it is usually short lived, not vindictive, never violent, and mostly quiet, so not much harm is done.  It simply  must be forgiven -- one must consider the source.

I have in the past on this blog mentioned his lack of judgment in how much ketchup to pour, how much shampoo to use in one shower session, what to wear--given the weather. But that sort of judgment is difficult to inspire in a  person who cannot keep three things in his mind at once, and who in and of himself does not have many purposes to his day. 

Ben is mostly cared for, and in that capacity, he is trying to spend his time on things he likes. I can easily distract him, as I will when this blog is done, with having him help me cook dinner, fold laundry, or with me playing a game with him. But there are many hours in Ben's day, especially in the summer, where he must entertain himself. He just does whatever comes to mind. This is a low energy thing, like games on an iPad or a movie. My job is to structure his day so that he doesn't get a steady diet of media and no exercise at all. 

Now to us normal folks...

Likewise, many persons of normal intelligence have no judgment about Ben. Ben is, to them, a freak and an inconvenience, though they would never put it like that. Ben will play and have a good time when out in the community or at church, but I get called so often by people who are concerned about what he is doing, and who expect me to moderate how fast, loud, vigorous he 'does --- whatever it is he does'. 

That is fine. I much prefer getting called to having people try to deal with Ben themselves, since they inevitably scare him, and then he may shut down and run off and hide or in some what refuse to communicate or deal with anyone. 

What is, perhaps, not so easy, is that usually what others deem 'safe' for Ben is way less than what I think Ben capable of, or what I deem OK for Ben to engage in. To others he swings too high, he bounces too abruptly and hard on the slide. OR he is too loud, ... he is just  ... too.... too.... too.   I struggle to diplomatically  settle this issue to the satisfaction of all and Often I lack judgment.

What has been my conclusion in the last 3 years [since Ben got BIG and suddenly UN-cute] is that this is the battle that he and I must continually fight till the end of our days. 

There will always be another person somewhere  who thinks Ben ought NOT DO this or that. No matter how many people I 'school' in Ben and win over, there will always be another one who does not know. The 'poor' (in money, in heart, in spirit, in mind, in everything) we will always have with us. [And they are us too].

Explaining and justifying Ben's existence will be done and redone 70 x 7 times or more, henceforth and forever more. 

And what makes it tricky is this:  I have  never met a person who would not admit to the idea of being inclusive and accepting of persons with Down syndrome -- in principle, THAT IS. 

None of us think of ourselves as intolerant. We accept all races, male and female, kids, elderly, all creeds. We are all raised for democracy and for minority rights, and we are not out to squash anyone's right to BE HERE -- in principle. We believe ourselves to be kind --- and worse, we all believe ourselves to be of sound judgment. :P People are embarrassed to complain about Ben, they tell me, but their better judgment tells them they must because of this or that standard or fear or concern.  

In practice, we are all prejudiced. I am not talking racism here, but that we are prejudiced on  just about any topic we are not familiar with. 

We think we know how society ought to work and what duties each of us has towards others. We were raised with those values, and they are important to us.

When we encounter  an 'otherness' in someone like Ben, our values and judgments are challenged. And most of the time we still stick to our guns. We KNOW have good judgment, we know how to behave. It is this "otherness' that does not know what decency is. 

If we are fortunate enough to have the OTHERNESS explained to us well enough to realize that this disabled person can be no other than what he is, we may grown an inch in judgment and wisdom. But it is rare. 

Such is the case if we encounter a person (perhaps Ben) who in the middle of the grocery store (perhaps in the vegetable section) feels an itch and decides (with the best judgment he can muster) that it needs to be scratched. If that itch happens to occur in a somewhat remote and inaccessible spot on the body, there is no telling what we might be exposed to.

But need we react with shock? Is it so very shocking that human bodies have human body parts? -- Or is it shocking that more remote spots on the human body contain usually concealed human body parts?  -- Is it the end of the world, or the end of all decency, or even the end of anything at all, except our own dignity and compassion when we choose to react?? 

The person (perhaps Ben) is not the slightest bit uncomfortable scratching where it itches --- even if we are uncomfortable for having caught a glimpse of the action while reaching for the  tomatoes?

[Don't get me wrong. I am not suggesting that we all expose ourselves in Safeway near the tomatoes. I am merely suggesting that those who accidentally do so, and who know no better, do not merit a reaction from us. We simply don't see them, and we move on, like Miss Manners would.]

Recently at church, someone had forgotten to blow some candles out at a spot near the altar. Ben happened to be in that vicinity at church on that particular day precisely because the adult in charge of the swing set had decided that Ben was too 'dangerous' on the swings -- so she had removed all the swings, and nobody can swing on the swing set any more. 

As a result Ben was looking for a diversion, so he went exploring. That is when he decided to blow out the candles that someone had forgotten to blow out.  In the process, Ben encountered one of the many persons who do not understand him very well. That person (like the person in the grocery store) was outraged at Ben's action (blowing out candles --- surely a felony on the FBI's top 10 most heinous list).  

I admit, Ben's judgment was not sterling in going behind the altar. (Incidentally, Ben's mom's judgment of not  being within 5 ft of him at all times was also called into question)... but I feel that the judgment of the person who could see nothing but sacrilege in Ben's blowing out the candles is perhaps also impaired a touch. 

Life is bigger than  a couple of candles, even if the candles are near or behind the altar of a sacramental church. 

Perhaps we are asked in the Gospel to "judge not lest we be judged", not so much because we too are guilty of much, but because [like everyone else] we understand so litte and rarely ever have the entire picture.  

It is mostly elderly persons who are consistently bothered by Ben's being around and 'doing stuff'. I myself know so little of what they suffer in body and mind, what their fears are, or how they struggle with loud noises, sudden movements, or the fear that someone might break something somewhere.

Lord Have Mercy. 

Benjamin, Music, and the future

What is it about Disney movies and their songs that make us want to sing along? If you have ever seen this hillarious spoof from Navy Baseball and enjoyed it...

...you should add to your list of fun video clips to watch >>Tangled with Ben singing "At last I see the light"<<  I am referring to the music in this scene:

I absolutely must record and post that video one of these days. :)

You see, I used to find it kind of funny to watch Ben 'sing' along with music he adored. He sings about one note, he is loud, and he is totally animated and swallowed up in the action, but today as I walked in on Ben and that touching scene in Tangled, my eyes were filled with tears. Here is a scene depicting a person who has finally gotten to see that which she has always dreamed of--and that at the same time that she is about to discover that a person she loves, loves her back. This is what we, at least in the western world, have for centuries depicted as the height of life: beauty, goodness, and meaning all at the same time, in company with persons we care about. It does not get any better than that. It no longer struck me as funny, but it seemed to me that he was not only entering into the song and its words, but that those moments are for him not only enlightening but soul filling. When Ben sings, he is the happiest of all.

I wondered what it means to him to see the light, what it means for him to experience the familiar beautiful music, to sing along with it. -- I wondered what happiness and light means to him long term. He looked happy in that moment, very happy, and he has the blessed lack of self-consciousness that when he is happy like that, he just sings and moves, and he doesn't care one rat's tail (or rear end, for that matter) what you think about his expression of happiness. And I wonder what I can do for him to help him live through many such moments.

You see, I am busily trying to figure out (as much in consultation with him as he is capable of) what his future looks like past high school, how to obtain guardianship of him in 3 short months when he turns 18--all those long term decisions that will largely define his life far into the future, including after I am gone, if he outlives me-- and even if he does, where will he live and how will he live when I am too old and do not have the strength to take care of him. 

This summer I have 3 tasks

1. apply for and go to court to solidify the guardianship (pricetag $500 to $2000 depending on whether I decide to revise my will at the same time).

2. apply for an extension of his medicaid so it does not lapse when he turns 18.

3. Apply for (and likely get denied) the Medicaid waiver for physical disabilities for Ben -- likely he will have to stay on the waiting list for the one for the developmentally disabled.

But money and legal issues aside, what does his future look like? Job wise, dependent care wise (someone taking care of him while I work), and otherwise?

I see him with music, and I think music is one of the things that makes him the very happiest, and music is going to be a big part of his life, I hope.

In church, he would LOVE to sing in the choir. In fact, a week ago, when I was at choir practice, I was trying to figure out why the basses sounded so bad, when I realized Ben had snuck up there and was 'singing' with them. The basses did not have the heart to tell me to remove him and put him back over in the pews to watch. When I did remove Ben, he was more than mildly disgruntled. He loves to sing. 

Also, in church, when he is not an altar boy, he has his copy of the director's score, and he waves a pencil in beat to the music every week. Thankfully the Orthodox service is mostly sung, so for all 90 minutes, he can 'direct' most of the service from his pew. His sense of tempo is good, and his direction (though I know it distracts some) is his way of singing, and he does it with all his heart. He so totally copies our choir director's motions, all the way down to how Richard used to cut off the diction of a 't', or hold a note while the decons chant their litanies. He can follow his own director's book because he knows how to read, and of all the people I know that go to church, none know more precisely where we are in the liturgy than Ben.

In the car, I am always tuned to KVOD (unless they are fund raising) and Ben beats to Mozart, Beethoven and Offenbach everywhere we drive. At home, his favorite movies are musicals, and you should see him STEP IN TIME when he watches Mary Poppins. The floor is rocking. He really gets into it. 

We have taken him to live concerts, to musicals, to theatre performances, but I actually think, if I ever dare go outside the box and figure out where to bring this about, that he would love Karyoke, he would love acting and singing in a play, he would love being in a band and in a choir. But that requires shattering boxes and stereotypes of what I normally do and don't, what school and other places will and will not allow, etc.  It requires boldness, asking, trying, as well as innovation to make it happen -- music for Ben, at least some of the time.

In the meantime, I am left with the memory of his singing this morning: his radiant face entoning "I see the light", and wondering if I will be able to help him increase those precious moment of beauty in the life plan I am trying to orchestrate for him.

To wrap up. Ben and I recently saw the latest Disney, Maleficent. And while there is an academic critique that could be made of its details, plots, and where it falls short (academics can always find such -- and it has been said that there is a reason that nobody ever raised a statue to honor a critic) the one thing that movie really got right was 'true love'. The thought that it was not the young man's kiss that restored her, but the kiss of a loving mother (mother figure -- not even her real mother) seemed so very true to me. Romantic love can be fleeting (or for some it can last) but the love of a mother for her children is true and enduring.

The Least of These

In my native tongue (Danish) the biblical phrase “Love your neighbor” is translated “Love your ‘next’”. As a child I always took the phrase as a call to love the next person that crosses your path, the next person you happen to run into during the day. That ain’t easy…

Recently in the pursuit of services for my son Ben, who will be 18 in September, I had occasion to call on an advocate from the ARC (Association of Retarded Citizens). She asked me to meet her at one of the many places where she works, in a homeless food kitchen, and she asked me to have lunch with her and her clients before we would sit down and discuss the specific issues that I was having with procuring state services for my soon adult son.

Ben and I arrived, and joined the food line and piled our plates with tortillas, beans, lettuce, and salsa, and sat down to enjoy lunch with about 8 other people. Our host, the advocate, was busy with a client in her office.

Her clients were very friendly, and they all introduced themselves. An elderly man, with long stringy greasy hair and a shirt that looked like he had been under the hood of a car most of the morning, served Ben and me tall glasses of iced tea. The others let us go first as honored guests. Others handed us napkins and showed us where to sit.

Ben fit right in, apart from his always being slightly overdressed with his usual tie and button up shirt. He sat down comfortably and ate, unconcerned with whom he was with, what they looked like, smelled, like, or how they ate.  

I on the other hand felt self-conscious about my over-dressed attire (I dress well for work and for doctor’s appointments and lawyers appointments, and I had seriously misjudged what the occasion required). But more to the point, I did not know what to say to these people. My presence in the room was big enough (compared to what I imagine their normal camaraderie was like) to put a damper on their spirits, putting them at a loss for how to resume normal conversation—or so, at least, it felt to me, and I was sorry for it.

This particular group consisted eight to ten morbidly obese persons.  All of them were 40 or older. Apart from the obesity, another tell-tale sign of poverty was the bad teeth and missing teeth in every mouth that grinned at me. But what took me a while to figure out was why their conversation (to which I was a mute bystander) seemed so juvenile to me.

Awkward in the face of my intrusion, they offered all their attention and conversation to a pug (owned by the secretary in the front office) who skittered from chair to chair licking food off people’s forks—forks, which the people afterwards would put back in their mouths as they continued eating.

These people laughed, they talked with food in their mouths, they belched loudly, unhampered by the middle class do’s and don’ts that constrain most of my behaviors at table.  It finally occurred to me that every single one of them had a low IQ –in other words, they were retarded—not as low, perhaps, as Ben, but 60- 80 or below is my guess.

Interestingly enough while Ben is about IQ 45, his table manners and ways of eating, conditioned by persistent middle-class table training, were incredibly refined compared to the rest of our company. Elbows at your sides, use both knife and fork, take small bites … you know the drill. (No, I am not patting myself on the back for this small feat in my child training. In light of these people, their needs, and the over all situation, who CARES if they belch at the table?)

After lunch, when I got back with the advocate to address Ben’s case, I asked her about Ben and his future. You see, the state of Colorado has a waiting list for funding for day care for adults with mental disabilities once they leave the public school system. Obviously, an adult with developmental disabilities needs to be somewhere while his parents go to work. I asked her what happens to adults with developmental disabilities, whose parents cannot or will not take care of them (while they are on the Colorado waiting list to get this day care funding). Nothing, she answered. Absolutely nothing. They are on their own.

Those persons I ate lunch with are homeless retarded persons, clients of this advocate who is trying to do what she can for them, while they are on the waiting list to get state funds so they can be taken care of properly. Likely they had parents who took care of them but have since died, and there is nobody else to take care of them.

I asked her what would happen to Ben if neither of his parents wanted to take care of him after he turned 18.  The answer was precisely what I dreaded. He would also be on his own until his place on the waiting list came up.

It is unfathomable to me to leave someone with the IQ of 45 in the street!!

Colorado, the advocate said, is 48^th lowest in the nation in the quality of care it offers its developmentally disabled adult community. (Much could be said, but I shall leave your own thoughts to ponder the weakest of the weak in our society).

[There is good news, however, and I must end on this note to do justice to my state. Governor Hickenlooper has spearheaded a movement to get rid of this waiting list with some legislation that just was passed in April. Colorado counties hope to get rid of their waiting lists for the developmentally disabled in the next year or so J. I was told that likely (not guaranteed but likely) Ben will be off the waiting list within a year of his 19^th birthday if all goes as they think it will. – We are blessed for Ben to turn 18 at this happy juncture and not 5 years ago.]

I drove home from this meeting deep in thought. Ben sat next to me waving his pencil-baton to the beat of Mozart – we were going back to our comfortable middle class existence by means of our air-conditioned car.

With what tremendous grief and worry, must the dying mothers or fathers of those precious people have drawn their final breaths--knowing that there was nobody to take care of their adult disabled children.

Tango with the Social Security Administration

I have held off on my blog about government services and special needs because it always seemed to me that it could be nothing but a long rant, or a pathetic whine.

Well, I suppose the time has come for this odious task, though I hope to make it at least marginally thoughtful or at least thought provoking.

If you have a child with special needs, and if that child is at any point in his life ill enough to go to the doctor, even the most secluded and isolationist homeschooler will eventually have a run in with government services.

Ben was born at a hospital in Kalamazoo, Michigan. And as soon as he was born I got a visit from social services. I say this appreciatively. Ben was, and is, chronically ill, and he qualified for Children's Special Health Care Services (also known as the Medicaid Waiver), a state service, which can function as either primary or secondary health insurance coverage. For us, we had parental coverage already, so  CSHCS functioned as secondary, which meant that we had no copays and no 20% payments for all those many procedures Ben had in his early years. Thank God!

Michigan, I might add, is an excellent state to live in for support for offspring with special needs, and in many ways I wish we were still there.

What was odd about Michigan was that we had to renew this medicaid waiver once a year. That is reasonable, you might say, since some children, like children with Leukemia and other diseases might outgrow their diagnoses and no longer need to be on the plan. Fair enough, but what it amounted to was that once a year, I had to traipse to a doctor who would document that yes, indeed, Ben still does have Down Syndrome, and then I had to set up a meeting with the person who ran CSHCS, a great lady, Marlene, and she would renew Ben's services very efficiently.

Not so, in 2003 when we moved to Colorado. In Michigan being on CSHCS is a birth right if you are born chronically ill. In Colorado, you were put on a waiting list, and as enough kids died off --yes, I know it is brutal to say so, but such is the case--your child would move up the waiting list for your county and finally get on the medicaid waiver. We spent 3 years in Colorado before Ben was far enough up on the list to be back on the Medicaid waiver (each Medicaid program is run by the state). And once he was, we started all the surgeries that could wait that we had held off on till that time. And it was a lot. He had had surgeries in the meantime, but only the absolutely necessary ones.

Renewal of the medicaid waiver in Colorado is also an annual thing, but unlike Michigan, it is complicated, a long review process requiring multiple bureaucrats to sign off on him, and inevitably every year at some point we are denied, have to appeal, and then finally the insurance is in place for another year. You may think this reasonable, since you do not  want to render government services to the underserving, so a process of checks and evaluations seem OK,  however,  for a parent with an obviously chronically ill  child, this annual hurdle is a pain, which perhaps could be lessened by being done every 3rd year for the most obviously deserving cases. --- I am convinced that we have layers of bureaucrats administrating Mecidaid whose jobs are only to make it more difficult to obtain services.... and the existence of which basically mean that fewer deserving families in Colorado get the services they need. -- So the question is: Are we so eager to make sure that no undeserving families obtain services that we are less concerned that perhaps deserving families (like Ben for 3 years) sometimes go without?

In fact, this post was inspired by my recent tango with the Social Security Administrations, and this is just one of  numerous cute anecdotes I could tell about my run ins with county, state, and federal social services on account of my youngest son having Down's.

Ben's Medicaid is renewed every June 1st, and every April and May I have another incompetent government agency story to tell. This year, I did the renewal interview in April. The normal process is that a lady from a private contracted company comes to my house, interviews me, looks Ben over to make sure he is still alive, and then stays for 2 hours asking all sorts of invasive questions, establishing whether he still has needs that require renewal. (If you add up her drive time, and the time she spends entering all the info, Colorado spends about 6 qualified man hours per year for a kid like Ben, so probably $120 or more per year for her part of the renewal process).

In addition, every 3 years, I go through the absurd inconvenience of proving that Ben does not get any SSI (Supplemental Security Income... basically social security for the disabled whose parents are below the poverty level). Well, you would think I could just produce my 1040 to show them I am not in poverty, or that different government agencies could talk to each other and send over the information, but NO... it is mY JOB to APPLY for SSI for Ben (knowing I will be denied) and then to bring that letter of denial to Medicaid, and without that denial, Ben cannot get his Medicaid Waiver renewed.

(Let me note here that there are so many forms of Medicaid that if you have heard anything bout Medicaid, you may already be confused, but know, just for now that Ben's medicaid is the Medicaid Waiver, which is health insurance for the chronically ill who are under 18, whose parents live above the poverty level).

So this year in May I get a letter from the state asking for the usual SSI denial letter, saying that Ben does not receive SSI. And I call the Social Security Administration, ask for the letter 3 weeks in advance of when I need it. The lady who answered the phone after a 50 minute wait (with a barking dog and a screaming toddler in the background) assures me the letter will be on its way well ahead of the May 28th deadline, so all is HAPPY.

Excepting, the letter did not arrive, and today was  May 27th. So Mamma Bear calls the Social Security Administration back. 1st call after waiting 1 hour: We can fax it to you, what is your fax number. I don't have a fax, but I will call my work, find out theirs and call you back... The person could not wait, so I had to go to the back of the line. Figured out the fax number, and then called back, sat in line for another 50 minutes. -- My new person cannot take a fax number to a fax that I am not sitting next to. I would have to go to the bottom of the line again (another 1 hour wait) AFTER I drive to a location with a fax machine and a phone from which I can call the Social Security Administration again, verify the first fax by faxing back my ID to show it is me there, and then I could get the fax I need to renew Ben's medicaid before June 1st. --- Not gonna happen that day because of Social Security Administration's hours, my needing to get Ben off the school bus, so I could potentially try again tomorrow to drive to where a fax is, call, wait, fax, wait, and finally get the letter and THEN drive to the county office with the letter a day late, and hope that Ben's Medicaid would still get renewed by June 1st.

I don't mean to make this a rant, and I don't want to continue the details of my driving to Boulder in quest of a letter that simply said that Ben does not receive SSI services... SITTING in line at a live place until it was my turn, etc, to procure my letter stating what everyone already knew... Ben gets no SSI... But let me say this...  EVERY YEAR, there is some major obstacle in the way of a perfectly reasonable and deserved renewal for a kid who will neither grow out of his Down Syndrome, nor shed his permanent physical illnesses and disabilities. WHY?

And please do not give me the answer that government is just messed up and only private companies can do this. Other countries can do this, and do it well and efficiently. Half of the process of renewing Ben's Medicaid is run by private companies. The process is messed up seriously for this reason--- In the United States we do not want to ever risk giving something to someone who does not deserve (or earn) it, and so we unnecessarily complicate the process to make absolutely sure that the undeserving is not rewarded. In the process we punish those who need the services... but they are usually so busy taking care of their special needs wards that they do not have the energy to protest and try to improve the system. When they finally get what they need, they breathe a sigh of relief. If they are lucky, they have a 6 month reprieve before the whole renewal system starts over again... that is, a reprieve in which they get monthly insurance claims denied,  hospital mis-billings, doctor's offices sending bills to collection, to say nothing of obnoxious  law clerks from collection firms who intimidate and threaten their credit ratings if they do not just cough up the money themselves immediately,

I used to pile all Ben's bills up till the end of the month and just pick a Tuesday morning when we were not interred in a hospital, and just sit and systematically go through bills from doctor's offices, hospitals, anesthesiologists, surgeons, labs, etc, all these individual billings that were all done wrong and either denied by our job-related insurance or denied by Medicaid for lack of documentation or authorization, etc.

There is nothing more intimidating than a cocky law clerk who has been trained by a collections agency to be as abrasive and threatening and unkind as anyone possibly can be. Collections agencies mercilessly bombard your cell phone, your home phone, and when you finally answer, they make you hold for one of their agents, who immediately is as unfriendly and menacing as he can possibly be, in hopes of intimidating you into paying what is not your responsibility to pay, but you're afraid not to.

Ben's has been sent to collection several times (in spite of the fact that the secondary medicaid insurance should make it impossible)  and it takes a back bone to stand up to the extortion that occurs when collections calls you up with a year old claim from a laboratory that misbilled the claim to start with.

All that to say, WHEN you have a very ill child in the hospital for months on end, Medicaid is supposed to ease that burden by picking up copays and co-insurance, but often all that happens is that it stalls payment till the claims are too old (it will not pay a claim over 12 months from the service date)... and then you are stuck not only caring for your ill child, but on your days home, negotiating medical bills that threaten to ruin your credit.

Do I think the system does not work?? Yes, indeed. Almost all chronically ill or elderly in the United States are covered by Medicaid or Medicare eventually... since health insurance is absurdly tied to your job, once you are long-term sick, when you need it most, you usually lose your coverage. It is, at its root, an absurd system .

At last check, I believe that 45% or more of all medical claims in the United States end up being paid by the United States government. -- The other half is paid by private insurance, which also, in my humble experience is designed not to pay if it can help it, and so the lot of the parent or other caregiver of the individual who is chronically ill is largely to navigate a sea of paperwork to get the two parties who ostensibly should be paying the bills of the ill person to actually do that which they contractually are obligated to do.

Yes, if you are independently wealthy, of course this is not a problem. But most of us are not. And when we have the misfortune of having a chronically ill family member.... a long term situation that will not go away until the person passes away, for many, many people in the United States, the system does not work, or rather it works poorly, it is stressful, and at times it totally fails us at the absolute worst moment --- when we need it the most.

OK, I don't know if this was a rant or a whine, but honestly, this is something I have dealt with for years. Getting Medicaid renewed is an absolute pain in the posterior... getting either insurance to pay is like pulling teeth. Folks, it need not be so. Why can't the United States ever look at what other civilized countries do and perhaps learn a thing or two and give a break to the disabled that inhabit her shores? I understand not wanting to support those who should and can support themselves, but for crying out loud, the elderly, the severely disabled, the dying.... surely we can recognize that they are not free-loafers.