by Tim on January 18, 2010
I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.
Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.
Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”
Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.
Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.
I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.
I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.
I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.
I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.
I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.
I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.
I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.
I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.
I have a dream that more money will be spent on services and support for both children and adults.
I have a dream that whenever any of us begins to fall there will always be another to help them back up again.
I have a dream that instead of judging we will take the time to understand.
I have a dream that what unites us will be stronger than what divides us.
I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.
I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.
I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.
I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.
I have a dream today.
by Tim on October 15, 2009
[Note - If you don't live in the U.S., your only reason to care about this post is probably to satisfy your morbid curiosity about health insurance in our country. It's best that I stop here before I go into an uncontrollable rant about that...]
For a lot of us Americans, it’s that fun time of year when Fall arrives, the temperatures cool, in many areas the leaves turn, and we sit down to try to decipher what our health insurance ‘options’ are for the coming year. Around October is when many companies hold their annual period where employees can pick, among other things, their health insurance plan for the next calendar year. Whether it’s called “Open Enrollment”, the “Election Period” or some other dorky term, the idea is the same – except for birth, death, or marriage, you can only change your insurance plan once a year with your employer, and during this period is the time to do it.
[Note - One other exception is that when you start a new job that actually offers benefits, you can do all this then too, regardless of what time of year it falls.]
Assuming you have any choice at all, you’ll spend quite a bit of time trying to unravel what the various plans claim they’ll cover you for, all while knowing full well that you’re paying your premiums in the shaky hopes that they’ll pay any claims at all should you commit the sin of actually getting sick. [insert additional sarcasm here] Eventually you may end up just throwing a dart at the wall and picking whichever plan it lands on.
But usually buried down in all that benefits stuff is one gold nugget that every parent of an autistic child should very strongly consider getting – a flexible spending account.
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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.
OK, so we’re still slogging through taxes. We figured out today – thanks to our family accountant – what we have to clear on total medical expenses for the year in order to be able to start deducting them from our taxes. I never thought we’d ever be eligible for that deduction given how high that threshold often is; I figured it was a long-shot at best. We put $5,000 in our flexible spending account last year (EVERY family with an autistic child should have one of those), drained it in four months, and then paid out of pocket for the rest. But I still didn’t realize just how much we’d spent.
FYI – If your total medical expenses for 2008 exceed 7.5% of your adjusted gross income (any money you paid into a flexible spending account doesn’t count since you already don’t pay tax on it), you can start deducting your expenses above that amount. What qualifies as a deductible medical expense? The things you’d expect (doctor visit co-pays, etc.), but there’s also lots of stuff you’d never imagine, like over-the-counter drugs and contact lens solution. Read Publication 502 from the IRS. Learn it, love it. You may also want to download this expense guide from one of the larger flexible spending account administrators in the U.S. It’s helpful too as it goes into more detail than the IRS document.
Anyway, we’re still not done tallying all this up, but all of our eligible medical expenses plus our insurance premiums (which by the way aren’t deductible if they come out of your paycheck pre-tax), so far come to a frightening number.
Over $14,000.
And you know, as far as parents with autistic children go, I’ve heard of people spending way more than that a year. We have decent enough insurance compared to some other people we know, too. It could be much worse. This does include medical expenses for Mary and I, but we can only forgo so much medical care to accommodate what we have to pay for him. We still do have to go ourselves sometimes.
I think we got that 7.5% threshold covered. Sigh.
And if you don’t think health insurance and health care reform is critical to the future of the United States, come over here and let me smack you in the head.
But you know, we’d do it all over again and again for him because that’s what we have to do. He’s worth every bit of it and infinitely more. But the thing is, we shouldn’t have to run up our credit cards or take money out of our homes to pay for all this. None of us should. Our children deserve better, and it’s time we find better ways to give it to them.
by Tim on February 15, 2009
In case you’re wondering about the low post rate lately, we’ve all been varying degrees of sick and drowning in work, and I’ve been plowing through this endless sea of tax crap. On top of having medical expenses out of our ears, I’m also self-employed and have various income (albeit, not much) and expenses from various projects I work on.
I thought our taxes were complicated before the J-Man was diagnosed with autism. Because we’ve invested a lot of time and money not only in therapies and medical things but also in constructing a home classroom, buying therapy supplies for use at home, and a giant stack of books to go along with all that, it seems like some of that ought to be deductible. Who knows, though. I’ve spent half my week logging receipts and invoices and whatnot (yeah – I know I should be doing this during the year) and the rest of the time trying to figure out what to do about all things autism-related that we’ve paid a LOT for.
Someone sent me the following link as a place to get some ideas. It’s not comprehensive, but it’s a good place to start. If any of you all have found any other tax resources geared toward parents of children with disabilities, let us know. It’s that time of year where we need to figure this mess out. It already looks like we’re getting a healthy refund (yay!), but the more of that we can get, the better.
Article – “Year 2008 Tax Benefits for Parents of Children With LD” at GreatSchools.net.
If you know of more, post them in the comments. Thanks!
by Tim on February 9, 2009
One of the bazillion transitions we have to think about on the road to Baby #2 is what to do about the fact that the J-Man is still sleeping in the crib we planned to use for the new baby.
The original idea was to convert his crib into a toddler bed (we have the convertible kind) and then move him into a separate, plain-old toddler bed. At that point, we’d convert the original bed back into its crib state and put the new baby in it. Sounds dynamite on paper. Well, not really, come to think about it, especially when part of this deal is that at some point when the baby moves out of our room, the J-Man may get the room at the end of the hall (i.e., not his current room).
The obvious flaw in the argument is that this is a lot of change to ask an autistic toddler to deal with. The implementation of this plan admittedly had us overwhelmed too. He sleeps very well for the most part, and woe unto anyone who says anything to put that at risk. He didn’t sleep through the night until 16 months old, and even then it took a while after that to get into something like a normal pattern. For most of the first part of his life, he woke up every two hours, every day.
I went in there tonight and watched him sleeping. He’s crammed into a corner of the crib – as he is every night – because it makes him feel safe and relaxed. This is the place where he’s slept for 3 1/2 years. He’s figured out how to find rest here.
I see how peaceful he looks. I think about how hard many days are for him. I think about all the challenges he has to face in his life. And the conclusion seems obvious as I write this.
Buy another crib.
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