Medical

The War for Our Children’s Services

by Tim on January 5, 2012

Unbeknownst to us, the following things were happening in December. It looks like Scrooge was working in shadows this year.

On December 1, a rule passed by our county that no one seemed to actually know about went into effect dictating that any family who made over 300% of some income limit (which we think is the poverty line, but no one actually seems to know this even now) would no longer be provided disability-related services for their children. Apparently this included us, though we still have no idea 300% of what.

Under these services, J has received 7 hours of developmental therapy per week. He has made enormous progress with his developmental therapist, who we think should be fast-tracked to sainthood. Originally he got 10 hours, and we found out later he should have gotten 12, but in September this was reduced to 7. We also have gotten case management services, which among a few other things essentially processes the paperwork and monitors the availability of CAP/Medicaid Waiver slots. Admittedly the latter is a tragic joke right now because the wait list is measured in several years at this point. There’s a growing dread among many of us that these slots may NEVER become available.

On December 21 – yes, three weeks after the rules went into effect – our case manager got a list of kids eligible for services, and J was no longer on it. No explanation, no warning, no nothing. This went into effect December 30. To make it worse, no one at our case management agency told us until December 28. So, the first time we knew of any of the above was 48 hours before we would lose all services. Oh, and pretty much everyone was on vacation for the holidays.

Ponder all that for a moment.

We were then told our only recourse was to file a financial hardship appeal. So here we are during the holidays, my best friend who I basically see twice a year is in town visiting, and there we are scrambling trying to fill out these forms and gather a pile of supporting documentation for our appeal. These included last year’s tax forms, proof of all our 2011 medical expenses, our health insurance info, copies of proof of residency documentation, and for good measure J’s 27-page IEP. I thought about pricking my finger and running it across one of the pages in case they needed some DNA.

We had no real optimism that this would work, but you have to do it. Obviously nothing was going to happen until January 3 when everyone went back to work. So we waited and started desperately trying to figure out what any plausible options might be. I looked at stuff around the house we could sell.

We were shocked to find out on the 3rd that we were granted a six-month reprieve. Our appeal was accepted at least until June 30th. After that, who knows. I guess our $12,000+ of medical expenses in 2011 were in some way persuasive. I suppose I should be thankful, but after all that groveling I’m feeling a bit short on dignity.

In the warped reality we live in, probably the only way we’ll get to keep services beyond that is either for the rule to be rescinded or temporarily lifted by legal order, or for one or more of us to get really sick and pile up a bunch more medical bills.

Yes we won what amounts to a proverbial stay of execution. Our future odds are pretty long, however. There are some questions as to whether our county is acting legally here, but that’s something we haven’t had a chance to explore much with anyone yet.

But there’s a much greater problem that frames the enormity and horror of this war over services and supports that affects every last one of us. Many states – ours included – are pillaging disability services budgets and cutting them into oblivion. There may be no more wait lists for things like CAP/Medicaid Waiver slots because there may no longer be anything to wait on.

These are bleak times, but we only have one choice – accept the challenge and fight. If we roll over, our children’s futures are in danger. Services lost may never be restored. I know we’re all tired, and it’s just one more damn battle to fight. We can take a little while, bemoan it, get depressed over it, stare at the wall, eat a dozen boxes of donuts, yell and be angry about it, and curse everyone we can think of.

Get it out of your system as best you can. Then get up off the floor, grit your teeth, set your jaw, and say two important words.

Game. On.

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A Journey of a Thousand Miles

by Tim on November 29, 2011

“A journey of a thousand miles begins with a single step.” – Lao-Tzu

Today I achieved something momentous, and I almost missed it. I completed my 1,000th mile since I decided to start running again and taking control of my health in August 2010. I’ve run well over 800 of those miles in 2011, including a marathon in March. Just to give you some idea, a thousand miles is approximately the distance from New York City to Daytona Beach, Florida, and farther than the distance between New York City and St. Louis, Missouri. To which I thought to myself, Holy crap! I can’t believe I did that!

A thousand is certainly a nice round number, but in light of Lao-Tzu’s quote, it means something more to me. Today I completed a circle, and now I get to start a new one.

With over a year’s worth of perspective, I better comprehend what a deep mess I was in last year. You can read all about The Great Burnout, but the short of it is that I was physically and emotionally exhausted and in trouble. It was a real low point in my life. It was either do something or fall apart. I am obviously glad of the choice I made. Little did I know where it all would lead.

I remember very well that August day last year, a couple of days before our wedding anniversary as a matter of fact. I laced up a clunky pair of running shoes, strapped on my iPod, and headed out the door for Week 1, Day 1 of the Couch-to-5K program. It primarily involved a walking warm up, alternating 60 seconds of running with 90 seconds of walking for 20 minutes, a walking cool down, and beaching myself on the couch after the effort. I felt like I weighed every bit of the almost 235 pounds I was then. I plodded along slowly and completed the workout in one piece. It was a manageable effort, and I felt satisfied. I had started, and that, it turns out, was the first step on an amazing journey.

The workouts got much harder. All I wanted to do was complete the 5K autism run that October with a goal of finishing in under 30 minutes. My knees started killing me. I fell back into a despair. But I knew I couldn’t quit. Much more than a 5K was on the line. I was on the line. I told my body I was taking a few days off, but then it was on, regardless of the pain. I don’t normally recommend running in that much pain, but my situation called for desperate action. I pushed through it, completed my training, and eventually finished that 5K in 28:52, with a knee that looked rather like a large grapefruit. I didn’t care. I felt like I was coming back for good.

One thing led to another. My runs got longer. Then one day while on a long run, in a fit of pique, inspiration, or sheer insanity – or all of the above – I decided to set the biggest goal I’d ever thought about going after. I decided to complete a marathon three months from that day. This past March, eight-and-a-half months after I started running again, I crossed the finish line and completed my first marathon.

It is true what they say. The finish line of your first marathon is a transition line for your entire life. You cross over, and your life is never the same again. And it hasn’t been. It showed me that if you keep taking one step after another, anything is possible.

That’s what the J-Man first taught me. His life and growth are a series of steps – some small, some enormous leaps – each hard-won. No particular one may be all that glamourous or noteworthy all by itself, but when slowly but surely added together, they create magic. This is one of the wows of autism. And for me personally, I’ve discovered this is one of the wows of life itself.

I have tried to apply what our J-Man has taught me to my health and fitness, to my work, and to my life. It’s working. I think I get it now. I may be a slow learner, but I have an excellent teacher.

I feel more confident in adding new and harder running goals, working to get our lives in better order, and growing my work and hopefully my income, too. I feel like I have some idea what the heck I’m doing now. Our J-Man showed me the way to believe again.

There’s no magic plan here for you to follow. There’s no checklist to fill out and work through. It’s not quick or easy. You can’t make an infomercial out of it. You most likely won’t get results any time soon, but you will get them. You just decide what your heart wants most, and you go get it. You go outside your proverbial or literal front door, you take a step, then another, and you don’t quit until you get there. There will be setbacks and detours, you will often doubt whether you can do it, but if you keep your eyes on the goal and never quit, you will get there.

I made that journey of a thousand miles. It taught me enough lessons to fill a book. And now I get to begin another journey. Where it will take me next will be beyond anything I can yet imagine. I know it. So today I take that next, single step.

So go take your step. Don’t wait for anything. Right now. Go.

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Melatonin – The Kinda, Sorta, Wonder-ish Supplement for Sleep

by Tim on November 13, 2011

A while back, we were at a crisis point with our J-Man’s sleep. It would take him 2-3 hours to go to sleep at night, which usually resulted in him going to sleep between 10-11PM. He was completely unable to calm himself down at night. We’d look on the video monitor, and he was essentially doing the equivalent of breakdancing in his bed, bouncing off the sides of the bed and up and down on the mattress. He was hollering, squealing, and screeching a lot, typically the sounds of being overstimulated and too overloaded to relax at all. Eventually he’d pass out from exhaustion and sleep. This was affecting everything from school to life at home.

He never has been a great sleeper, to put it mildly. He didn’t sleep through the night until he was 18 months old, and even then we endured long stretches where he’d get up at least once or twice a night or get up really early. There were countless nights where he wouldn’t go to sleep unless we were in the room holding him. We went through long periods of it taking herculean efforts just to get him dressed and ready for bed, let alone get him to sleep.

It started getting better, and we got to where with some confidence that we could expect him to make it through most of a decent night. Then we hit that patch a while back where he was just completely unable to put himself to sleep until he passed out from exhaustion. He was doing poorly at school and at home, he was unable to regulate himself much at all during the day because he was too tired to cope, and of course we were all on the edge of insanity. It was a really grim time around here.

We knew we had to do something and soon. If you aren’t getting sleep, everything else will go to hell. Sooner or later, you will break. We didn’t know what we should do, but we were ready to consider just about anything at that point.

One of the things you won’t see me do much is talk about or advocate supplements. I personally take a typical assortment of things (e.g., multivitamin, fish oil, probiotics), but I take the supplements market with a lot of skepticism. The rigors of testing and science in general are regularly missing when it comes to these largely unregulated products. We give our J-Man much the same kind of things: multivitamin, probiotics, calcium (since he eats almost nothing dairy or anything else with calcium in it), and a green superfood powder that is about the best we can do right now for vegetables since he refuses to eat them. It’s not the same as real food, but it’s the best way we can improvise at the moment.

All sorts of people gave us advice about pills, supplements, and medications, many of which I found rather dubious. So that’s the perspective we brought with us when looking at our J-Man’s sleep difficulties. Bottom line is that we knew we had to do something or we were all going to go crazy. Sleep is the foundation for everything in daily life, and no one was doing well without it.

I’m not really spoiling the plot to jump ahead and say that we settled on using melatonin, which has worked well for us. Before we entertained trying something like melatonin or something in prescription form like a sedating-type mood stabilizer, we tried everything else we could think of. We aren’t opposed to medications by any means, but since our J-Man is minimally-verbal, it’s really hard to know what effects medications (or much of anything we do) specifically have.

I don’t like experimenting without some means of understanding the effects of what we do. I’m a pretty analytical type. I like knowing how things work and why. I bring this sort of process to bear when we attack problems like sleep.

Here are non-supplement/non-medication things we tried over the years that worked to varying degrees. I do think it’s worth experimenting with these and similar techniques before giving your kids any supplements or medications.

  • Structure your nighttime routine. Do the same thing every night when getting ready for bed as predictability itself is often calming.
  • Institute a standard time for bed. This is true for most kids and adults whether they’re on the spectrum or not.
  • If your child likes water, try a nighttime bath. A nice, warm bath can be very relaxing.
  • Look in your child’s bedroom for sensory violations, and don’t forget the fabrics they wear to bed. If anything seems bothersome to your child, eliminate it and see what happens.
  • Try a white noise machine if any sudden noises wake your child or keep them from going to sleep. Many find white noise machines calming regardless.
  • Look at diet, particularly in the afternoon and evening. Are they eating things that could keep them awake (e.g., spicy food, high in fat), eating a lot before bed, or drinking things that inhibit sleep (sugar or caffeine)? Are they allergic or sensitive to foods or drinks that would then upset their sleep? Are they experiencing silent reflux?

Be prepared for these changes to be a battle at first, but stick with it. One or more of them may pay off. Also don’t forget that if your child gets out of bed if they can’t sleep, make their room safe. Sleep deprivation can be very agitating.

If all this fails or if it stops working, consider these medication type interventions. We started with melatonin, which is an over-the-counter sleep supplement rather than what I’d consider medication. It has proven sufficient for us right now. It may not remain so, and we know that. When or if the time comes for us to adjust what we do, we will attack the problem then.

The first few days didn’t go too well, but that did pass. This isn’t unusual. At first, he’d wake up in the middle of the night, and it was really unpredictable about what would happen after that. He might go back to sleep after a while, or he might have just stayed up for good. We had this sense “Oh, crap” feeling about it when all this happened. We worried that we were trading off him taking forever going to sleep for him going to sleep quickly but waking up at 3AM – essentially the same amount of total sleep shifted backwards three hours. Thankfully after a week or so, things stabilized. He was going to bed pretty quickly and getting up within reason of a normal hour. (6:30-7:00 AM plus or minus)

Some parents we know have reported undesirable side effects that don’t go away, though. One reported that their child had night terrors upon taking it that went away when they stopped. Others have said the problem of time shifting their kids’ sleep (going to bed earlier and getting up earlier) rather than getting more sleep didn’t go away. Some parents found their child got more and more resistant to the effects of melatonin as time went on. Our J-Man seems to have had a more unusual side effect. His bowel movements changed for quite a long time, though now they are getting closer to normal. I can’t say for sure if it’s from the melatonin or why it happened, but it seems likely they’re somehow related. This hasn’t proved a big deal for us, though.

This past week, he has been getting up very early again – about 5AM. We can attribute a lot of this to the time change, which is always the bane of our existence. We have started to wonder whether the current dose of melatonin isn’t working as well, but we’re taking a wait and see approach about that.

Most everyone starts with the 3mg dose. Melatonin is available at most big box and drug stores and is very inexpensive. I know some have bumped up to 5-6mg and/or have ended up supplementing it with a prescription medication. The 3mg remains pretty effective for us. I’ve heard mixed reactions to time release melatonin, some saying it works out that the dose is never strong enough to get or keep them asleep.

Melatonin is definitely one of those “your mileage may vary” products. It is generally considered very low-risk, so as experiments go this should be one you can do with less anxiety. However, for children under age 5, I’d suggest being more cautious and going over this carefully with your pediatrician, which really you should do regardless. I don’t know what the minimum age is – or if anyone knows – but as a rule, the younger the child the more careful you should be.

[Edit: 11/14/11 - The day after I posted this, I saw this article "Genetic studies probe sleep hormone’s role in autism" about a study finding much lower concentrations of melatonin and the enzyme that produces it in their autism group vs. their control group. Very interesting!]

If you try melatonin and it doesn’t work, you may want to consider prescription medication. I know many families who have gone this route to varying degrees of success. Many meds that normally aren’t used for sleep disorders do work for autistic children for reasons no one quite understands. While off-label use of prescription meds is rather common among autistic children, it’s still pretty confusing to parents and medical professionals, too. There indeed are meds primarily for mood disorders that are traditionally used for calming and sleep in neurotypical people that also work for autistic children. You should be very careful with these in my opinion and not use them without caution and close supervision of a qualified medical professional, particularly a child psychiatrist who specializes in autism.

I personally from experience would not recommend using psychiatric type meds under the direction of a pediatrician or general practitioner. I think it’s critical to find a specialist in both autism and pharmacological interventions. These are not meds to screw around with, and it’s rare that pediatricians have the specialized knowledge required to manage medications with autistic children, particularly when many specialists don’t yet understand how or why many medications work with our kids either.

Standard disclaimer that you should always use supplements and medications under the direction of a qualified medical professional. Melatonin is one of the safest and natural options available for helping your child sleep. I wouldn’t say it’s been a ‘wonder drug’ like some make it out to be, but it definitely has given our son a number of improvements to his sleep that have made life easier on everyone. We certainly give it a thumbs up.

[Thanks again to Danette at S-O-S Research for including this post in this month’s Best of the Best series on ”Medications and Their Use with Special Needs Kids” edition. Starting November 15, you can see the entire collection of posts via that link.]

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Our Last Trip to the Dentist – or That Thing I Haven’t Wanted to Talk About

by Tim on October 10, 2011

There’s no nice way to say this. Our last trip to the dentist a couple months ago was traumatizing. I haven’t really wanted to talk much about it. It was that bad.

Let me preface the rest of this by saying that it had nothing to do with the dentist or the staff. Unlike our previous dentists’ office who we thought treated us poorly, we love our current dentists. There simply are some ordeals we and our autistic children have to go through that can’t be made good by anyone. Dental hygiene is hard enough for many of our children. But trips to any doctor’s office scare our J-Man into such a horrible place emotionally that I can’t describe it in words, though I imagine many of you know the kind of terror I speak of here.

If you want, you can go back and see our chronicles of dentistry in these past posts:

I dreaded this most recent visit for even more reasons than usual. Mary was recovering from her surgery and still on restrictions against lifting any weight, so doing anything with the J-Man at the dentist was completely out for her. It would be up to me, the dentist, and the staff.

In addition, they needed to pull one of his baby teeth. It was pretty loose already, but his permanent teeth were already completely in behind it, and all those teeth in one place doing different things had been bothering him for a couple of weeks. It needed to go ahead and come out. He’s already super-super-sensitive to anything even the slightest bit unusual with his mouth, and he had been even more reluctant to let us anywhere near his mouth during all this. Clearly all this added up to a formula for impending doom at the dentist.

Thrown into the mix was the obvious fact that he was several months older, bigger, and stronger than the previous visit where we were barely able to hold him in the chair. I’ve been working out consistently for well over a year now not only for my own health but for times like this when strength is essential. But there are limits to how effective this will be. There comes a point where the amount of strength we would have to exert to hold him would be impossible to apply without injuring him. I think we’re there now.

In past visits, we’ve treaded the line between surviving the dentist visit and a cataclysm. As you might expect, this was all a recipe for disaster.

One problem became obvious as soon as we tried to start. Not surprisingly, we were in the ‘special room’ where everything is toned down and kids can holler as much as necessary without upsetting the other children in the office. Whether or not the J-Man will ever care I don’t know, but it also affords him some privacy. The problem is that there is only so much space in one of those rooms. The most people we could fit on and around the J-Man was four. But it wasn’t enough, and we all knew it immediately. Holding him in the chair was one thing, but keeping him steady enough to not get jabbed by an instrument was something else entirely. Actually, it was impossible in those circumstances. His safety, and perhaps that of the dentist and hygienist as well, was at high risk.

So I gave them permission to do something I dreaded ever being faced with – putting him in the papoose board. (Link to a papoose board product page – click the Images tab for more pictures.) I felt like a horrible parent, and still do two months later. The look in his eyes all during the appointment was of complete terror. He made prolonged eye contact with me, which he never does, clearly imploring me with his eyes to make it stop. I sang to him. I put my head close to his. I did everything I could think of, though I knew it wouldn’t help. I can still hear him screaming over and over again. It makes my blood run cold to think about it.

I’m not sure I’ve ever felt as awful as a parent as I did then. I knew rationally that we had to get his dental work done, but that fact couldn’t possibly alleviate how horrible I felt subjecting him to all that. If someone had told me in that moment that if I’d allow someone to stab a knife through my hand then my son would feel OK again, I would have taken the knife and done it to myself.

Eventually, it was over and done. He was pouring sweat and smelled of raw fear. I got him in the car, and he fell asleep in his car seat. (or passed out, you pick) He sat in the recliner at home with me for a while, very quiet and withdrawn. Later in the day, he got back to normal. He is very, very resilient. I, however, was submerged in a guilt-ridden mood all day and night and into the next day. Writing this puts me back there again.

It was a horrible experience, but I’ve been trying to do the only thing I can with it at this point – learn from it. Having a couple of months to reflect on it, I think we have a better idea of what we need to do next time. Here are my ideas.

  • We need to talk to the dentist in advance of our next appointment and work out a strategy for a more successful visit. They have always been receptive to this, but it will clearly be more important next time.
  • We need to look into sedation and whether it’s a viable option for him.
  • We need to see whether there are other methods of restraint that don’t involve that papoose board but that don’t present a real danger of someone getting hurt by an instrument.
  • We should at least try social stories with him and well in advance talk about dentists via story books. It’s hard to imagine that anything will convince him that going to any doctor isn’t torture, but we have to try.
  • We need to talk to his teachers and OT to see if we can develop a broader strategy for easing his fears in medical situations. For example, they talk about medical things like doctors’ instruments in class using a toy doctor kit and a doll in pretend play.

Would love to hear your suggestions. I know this is something most all of us struggle with.

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Colon Blow

by Mary on August 17, 2011

[Tim: Mary tells her story about everything that happened over the last few weeks that I first posted about in "When Medical Emergencies Attack Your Spouse".]

Towards the end of June, my tummy started to hurt a little. By the beginning of July, it was a bit more bothersome, and on July 2, I had a really bad night. I assumed this was another diverticulitis flare, and told Tim I was going to go to the ER and probably get some oral antibiotics, and come home. The doctor told me it looked REALLY minor, and that 10 days worth of antibiotics would take care of it.

Except, the pain wasn’t getting better, and in fact got worse. I lived with it until the next Sunday… and then called my parents to say that I was going to the ER, that I would probably be put into the hospital for IV antibiotics, and could they please come and stay with the kids. I packed my little overnight bag with some pajamas and a pair of clothes to come home in, and off Tim and I went. The CT scan confirmed that the really minor place looked a goodly amount worse, but again, I figured there would be IV antibiotics, and I would go home.

I spent the next few days attached to IV antibiotics. My parents brought Dale Jr. to visit on Monday, and he climbed onto the bed and we snuggled. Everyone was very careful to keep him from doing me any damage, but I just hadn’t really started feeling better from the antibiotics yet.

On Tuesday, the surgeon came in and started up about surgery again. I looked at the man and said, “Look, you’re a surgeon. Everything looks like it needs cutting to you. I want a second opinion… by a gastroenterologist.” Enter the gastroenterologist on Tuesday afternoon, who began our conversation with “I haven’t read your chart.” I immediately bristled, and then calmed down when he continued, “Because I don’t want to be swayed by other doctors’ comments; I only looked at your scans.” I looked at him for a minute, and then he sat down in the bedside chair and sort of sighed and said, “You need to have this surgery. This place looks pretty bad, and it’s not going to get better.”

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There Are No Shortcuts – Ideas For Making Better Therapy Decisions

by Tim on August 14, 2011

This is a post about how we can make good decisions about therapies for our children. But first, I need to set the scene a bit.

The details of your story and ours may vary, but the emotions from which most all parents make decisions about therapies are very similar. I believe you’ll make better choices about therapies for your child if you grasp where you are emotionally with all this. Once you do, you’ll be able to decide from a position of strength and know what warning signs to look for, a list of which I include later in this post.

Our earliest days in therapy with our J-Man – starting with feeding therapy around nine months old – had one consistent theme.

We figured that at some point it would end. He’d learn what he needed to learn, and we’d move on. Therapy was merely a detour in his childhood development. He’d figure out how to eat and overcome his sensory issues, and we’d get back on the road with life.

Almost everything at that point sounded so foreign to us, as it does to everyone when they first get on this road. If it didn’t seem invasive or completely hokey, we at least considered it. We got him the various array of standard therapies for issues with names I’d never heard of, which was admittedly about everything at that point.

You always start out in near total ignorance. We did plenty of research and learned that a surprising percentage of people – kids and adults alike, including Mary and me – struggle with feeding issues, sensory overload, motor planning challenges, and the like. For a while, it was all very interesting, like some research project. The various things we read said he’d likely either grow out of his sensory and eating issues or retain some level of them, but with therapy and some effort he’d be able to adjust well. Sounded OK to us.

But we sorta skipped over the parts that said that other issues may be going on along with the sensory challenges. He was a loving child who’d been late on a few milestones – OK, so a lot of milestones – but no big deal, we thought. He was just having a lot of sensitivities and difficulty figuring out the world. A lot of us do. In hindsight, it’s easy to see everything we missed – or that we refused to see – back then.

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Lessons from the Road – One Year Later

July 30, 2011

One year ago today, I started running again after many years. My resolutions from The Great Burnout last year were to run and change my diet. That was basically it, though each involved massive lifestyle changes. But my what changes they have wrought in my life. If you’ll indulge me a bit, here are some [...]

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When Medical Emergencies Attack Your Spouse

July 28, 2011

In case you’ve wondered where we’ve been, we’ve had quite the chaos this month. The main crisis involved the rapid deterioration of Mary’s health early in the month. She started getting sick, and it got much worse. She was admitted to the hospital about three weeks ago, and she had major surgery a few days [...]

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