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Therapy

In Dreams Asleep

by Tim on November 17, 2009

I wrote in “In Dreams Awake” about a dream I had that came true not long ago. Now I wish to write about another dream I had a few weeks back. It’s rare for me to remember dreams at all, and nearly unheard of for me to remember them in this much detail. So here is a dream that has not come true, at least not yet.

To unpathed waters, undreamed shores. – William Shakespeare

Dreams are illustrations… from the book your soul is writing about you. – Marsha Norman

I dreamed Mary and I were sitting in folding metal chairs – the gray and somewhat wobbly kind you see by the hundreds in church fellowship halls and outdoor events everywhere. We looked down and grass began to appear under us. The grass became mottled by dirt – bare places in the expanding grass – and was made uneven by tree roots slowly emerging from the ground.

Around us, buildings slowly began to reveal themselves, forming the boundaries of what became an enormous quad, a great lawn also ringed and permeated by oaks and magnolias. Then a sea of chairs coalesced all throughout the quad. Soon they were filled with people – an endless variety of families it seemed – from every generation and from every walk of life you could imagine, but none of whom we knew. They formed fully into being, sitting in perfect geometric arcs around the quad like a great parabola with a stage as its focal point.

A large, square formation of neat rows of chairs filled the space between the arcs and the stage, filled with students in their navy gowns, mortarboards, and tassels. Graduation? But for whom? I realized the ceremony was already well underway. Some students were lined up on the lawn to the right of the stage, waiting for their turn to cross the stage. One student was walking away from the stairs on the left side of the stage, holding her diploma in her hand, waving it triumphantly to her family. I could finally see the stage clearly, and it was filled with the usual dignitaries – principal, administration, teachers.

I still didn’t know for what person we were there. We have numerous nieces and nephews, friends working on higher degrees, or was this the past? I didn’t have a clue.

Then I noticed something very odd. No more names were being read. The ceremony had just stopped. The middle-aged man at the podium did not call out the next name. It was like everyone was holding their breath. Instead of impatience, I could feel anticipation swelling through the formation of students. You could see heads turning throughout the crowd. Many of them craned their necks up and around; some stood up to get a better look. The crowd knew something important was about to happen – everyone, apparently, except us.

For the longest time, nothing seemed to happen. But everywhere we looked, every single person was smiling. Many had tears in their eyes. All of them radiated happiness, drinking all this in like people savoring history. Then I realized that all of those jubilant faces were now looking at us.

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All the Good Things

by Tim on October 2, 2009

My health has just been for crap lately, so crawling out from under my self-pity and general groaning – which I’m not good at in general – has required some serious conscious effort on my part.

Thankfully, the J-Man has his ways of snapping me out of it with yet more astonishing new things he’s achieved lately. His last two weeks at school this quarter – which ended a week ago – were like a quantum leap forward for him. His progress at school has been extraordinary, and it seems like every day at home yet another new beam of light comes shining out from him.

As I noted one of today’s great achievements, I got to thinking about all his recent accomplishments and newly-developed skills. I decided to start trying to write them down so I could both celebrate them and snap myself out of my self-indulgent funk. So, here are a handful.

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Who’s Gonna Ride Your Wild Horses?

by Tim on September 29, 2009

For a long time, I’ve been excited about trying hippotherapy with the J-Man, particularly since the horse farm field trip that originally got my hopes up was canceled due to weather last spring. After many months of waiting, our class was going again! Just our luck, it rained the morning of our field trip, which brought forth a long string of flowery language from me as I watched the weather report. But when the teacher told us at school that this farm has a covered riding area, I was all like, It’s on!

I was born in Kentucky, where you grow up at least in the vicinity of horses regardless of where you live or what you do. I’ve been on a horse like once, but I’ve found just being around horses to be calming. Not something I can easily explain. But with all the wonderful experiences I’ve read about or heard people having with therapeutic horseback riding, I have been looking forward to seeing how the J-Man would feel about it.

I confess that a lot of what I brought to this field trip was my own desire to find something the J-Man really loves, which brings with it a certain amount of selfish emotional baggage. I couldn’t help but have in my mind how I wanted his first adventure on a horse to go. It’s really not fair to him to hope for some revelatory experience every time we go do something new together, but I think it’s a natural part of our psyches as parents to feel like that. In a life filled with challenges, we want to help them discover what they love most and then go for it.

I’d call our first horse adventure a pretty good one – not revelatory – and one that we plan to do again. The farm has a good and caring vibe to it, and you can’t help but appreciate what all they do for special needs kids. They have a free event one Saturday a month where families with special needs kids – and siblings too – can come and ride horses and enjoy the farm. The horses almost seem to exude calm from every muscle, or at least that’s what it felt like to me.

The covered riding area was perfect for the rainy, gloomy day outside. Each of the kids took turns riding the horses – with varying degrees of excitement about it. I took the J-Man over to look at the horse he’d be riding (a beautiful, brown and black horse named Max) so he could get used to him while still in my arms. He was noticeably calm while we did this, even petting the horse – with a little nudging from me – without any noise or complaint or any real hesitation. His touch on the horse was slow, caring, and gentle. I would have given anything to know what he was feeling as he did that.

Max is not a very tall horse, which came in very handy. I didn’t measure him, but I’d guess maybe 5 feet and a bit. We chose him both for his calm and his smaller stature because we knew we’d be walking alongside the horse and holding the J-Man up there. He wouldn’t have anything to do with the helmet, so we just flanked him with arms and people.

When it came his turn to get on, he fought it some and protested, but I’ve certainly seen him fight things a whole lot more than that. The first lap around was primarily us trying to reassure him, help him calm down, and for us to not get stepped on by the horse. Just to throw in some humor of his own, Max deftly avoided a pile of manure by changing lanes and nearly pulling me into said pile while I was trying to sing the ‘Calm Down Song’ to the J-Man. (Thanks, Max.)

The second lap was a much different story. We felt his body begin to relax later in that first lap. All the good sensory gifts that horses can give were working their magic. On the second time around, the protests stopped, his face became thoughtful and serene, his back started to ease down into the saddle, and he held on to the pommel of the saddle instead of my arm. One by one, I could feel his little muscles unwind. Meanwhile, my heart was about to jump out of my chest with happiness.

You could tell he was ready to get off by the end of his two times around, and I took him down and gave him the biggest hug I could. And all the parents cheered for him because they know new and unknown things are so hard for him.

We tempted fate again by putting him on Max one more time a few minutes later. I think we didn’t allow the J-Man the necessary decompression time after a big sensory event as he was pretty upset the whole lap around. (We just did one lap this second time.) In hindsight, that was a lot to ask him to do in that time span, but there’s no way to know unless you try.

But, he did it. He stayed on the horse. He began to overcome those fears. He tried something very new and different. Getting on an animal that’s many, many times bigger than you – calm or not – is something I know a lot of neurotypical kids and parents would be too frightened to do themselves. And for that one lap around, he found something that right now only he really knows. But whatever it was, it was clear enough to us to know that we need to return and give it another go.

We plan to go again next month when they have their special Saturday event. Usually with him, the first time of anything stressful is always very difficult, but each successive time gets better. Given the meltdowns we can get just from moving his car seat to a different car, the fact that he didn’t have anywhere near that kind of reaction to the horse I think means something. What it means, though, only time and experience will tell.

For those of us whose kids can’t easily communicate what they love and what they don’t like, how they feel in new situations, or how they experience an event like this, this is largely what we have to do. We look for experiences that are geared to be affirming to our children and their needs, we go give it a try, and we see what happens.

[Continue on to see all the pictures!]

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The Cost to Raise a Child and Yet More Autism Disparity

by Tim on August 5, 2009

I saw the results of a study this morning that gave the total cost of raising a child (in our lingo, a neurotypical child) into adulthood. Let’s compare that to the cost given by a Harvard study a couple of years ago on the cost to raise an autistic child into adulthood.

Average cost of raising a neurotypical child – $290,000

Average cost of raising an autistic child – $3,200,000

But wait! The mathematically astute among you will notice that the second amount doesn’t quite add up logically. Not many people even make that much in income over 18 years. A chunk of that is because health care and educational expenses are factored into that number regardless of who pays for it (parents, insurers, Medicaid, local schools, states, etc.), but there’s another big chunk that most no one – other than parents with autistic kids -thinks about.

In many families with autistic children, one of the parents reduces their work hours or stops working altogether in order to care for their child, learn all the therapies, be their advocate, etc. I freelance when I have time, but my net revenue per year is maybe 20-25% of what I would get paid to work full-time in the corporate world.

The reality for me is that I took a 75-80% pay cut to take the greatest job in the world – being the stay-at-home dad for two awesome kids. But there’s another reality. Until there is greater access to care and serious health care and education reform in the U.S., the financial costs of all this will continue to grow more and more rapidly. So far, we’ve been lucky. I know of plenty of families on the verge of drowning.

But the J-Man is neither a statistic nor a dollar amount. If we had to sell our last pair of shoes, we’d do it. The moral of the story is, no one should have to.

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When the Only Thing Routine is the Lack of Routine

by Tim on June 2, 2009

It’s hard to comprehend that Little E is four weeks old today!?!? Time flies! Perhaps it particularly flies when you’re too tired to understand the concept of time anymore. :-)

We do seem to be getting some aspects of the baby’s sleep to a better place, so we are starting to get a bit more sleep at night, and sometimes even in our own bed too. The nursing/recliner sleeping thing has certainly been rough on Mary. I think we’d both forgotten how much the sleep depravation babies bring with them can turn even the best of us into drooling, narcoleptic idiots.

The J-Man is struggling more than before in his adjustment to everything. Weekdays when he’s at school much of the day, he does fairly well overall. We haven’t seen any major, ongoing issues at school, which we think has been a real achievement for him. He certainly has been ‘off’, with his teacher and OT noticing what we have been at home – he’s hard to calm down and get to focus and generally keep still in one place for any length of time. It’s clear the lack of structure in our chaotic house right now is really causing him some stress.

A couple of hours after he gets home from school, he gets more and more into his “running rebel yell” mode, where he runs aimlessly around the downstairs hollering. He’s not upset or angry or anything – as a matter of fact, he’s generally smiling and even laughing while he’s doing it – but it’s like he’s turned into pure, nearly uncontrollable, kinetic energy. Eventually he can get so overloaded that he starts coming unraveled. This has been really bad over the weekends where he doesn’t get the structure of school and losing him to his frenetic running and hollering is almost a given.

We’re been doing some serious therapeutic brushing and joint compressions lately [a real basic overview here - just don't go doing it on your own without a trained OT], which do help, but when he’s heading toward full freak-out, the calming effects of them last little more than a few minutes. Even staying ahead of the freak-out, the brushing and compressions only seem to partially forestall the inevitable. Right now, we can’t really have much structure around the house, so it’s clear we need some more serious sensory intervention.

The OT at school is starting him on an experiment with a weighted vest. [a decent overview here] We tried this about a year ago. He was kinda young for it then, and even the little bit of extra weight threw his then more fragile gross motor skills and balance off so much that he couldn’t even walk in a straight line. Reports from Day 1 of this latest experiment with it was mixed and inconclusive, but it takes a few days to discern much about whether it’s helping or not.

On the personal side of things, to be honest, I’ve been having a very rough time of things the last several days. Prolonged lack of decent sleep is usually a one-way ticket to a bad place for me regardless of anything else. Most days, I’m a walking, finely-tuned chemistry set. With our daily – particularly nighttime – schedules being what they are right now and all the new and exciting and stressful and sometimes confusing changes in our lives, I haven’t found a way to rebalance that equation.

Physically, my body is feeling a lot older the past couple of weeks, too, to the point where it’s often hard to bend over to do much and even walking anything more than a couple of lengths of the house feels like running a couple of miles. I’ve seen more of my chiropractor than usual, and I’m going for more therapeutic work tomorrow to see whether she can get my back and knee to move. Even simple things like bending over to change a diaper or walking the baby around are getting harder.

Trying to coax a non-sleeping baby through the night and a stressed, unfocused, whirling dervish of an autistic toddler – along with his crying brother – through the day has some weekends felt like a bridge too far for me. I think it’s the need to divide time between them that’s been the hardest for me. I haven’t reached any sort of peace with that yet. I know it’ll come someday. Right now, it’s just hard.

I had forgotten how tiring and emotionally and physically challenging these first weeks with a new baby can be, even without all the other stuff in our lives. I just hope we soon get to the point where we get just enough sleep to restore just enough brain cells to really enjoy and appreciate how good things really are. It’s hard to keep perspective when your main objective is simply to make sure everyone is wearing the correct clothes and you don’t drool on yourself in public… at least not much.

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What’s Your Autistic Toddler Like Now? (Part 2)

by Tim on February 22, 2009

This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

If you haven’t already, go back and read Part 1. If you have, let’s continue on!

Characteristics That Are Significantly Present (continued)

Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.

School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.

He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.

That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.

Continue on with Part 3! [click to continue…]

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What’s Your Autistic Toddler Like Now? (Part 1)

February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all [...]

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Mental Health Gets Bailed Out Too! And Disability Rights Activists Get a Two-Fer!

October 3, 2008

OK, I wasn’t planning on posting again until the blog redesign is done (which should be in the next day or two) and we can issue forth a whole exciting deluge of revelations and great excitement. But this was too good to not post.
While I think the whole bailout bonanza in Congress is too depressing [...]

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