It’s that time again when they update us on the progress of how the clinical definitions of autism may be redefined in the next version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM. (Read more about this in our The Clinical Definitions of Autism, Asperger’s, and PDD-NOS post from a while back.)

The Neurodevelopmental Disorders working group for the DSM-V (V = 5th Edition) has an interesting list of issues related to ASDs that they are trying to reach conclusions on before the 2012 target date. (Note this is an older version of the list, but it’s still a fascinating read.) To say that whatever is ultimately approved for inclusion in this manual will affect the lives of both parents of autistic children and autistic persons is a serious understatement.

There has already been a lot of commentary and some controversy about this process. It does seem, however, that the working group assigned to revise the DSM for autism have tried to be methodical. careful, and sensitive to all the issues involved. Honestly, I think they were given an almost impossible task here. We won’t really know how well they succeeded until we see the first draft.

This NY Times article describes the latest controversial issue in this process as well as some ongoing ones. This most recent one has already drawn a ton of reaction and might easily be among the most talked about when the draft is released.

The big question being discussed now is whether Asperger’s as a specific, separate diagnosis will be left out of the next DSM. ‘PDD-NOS’ may also be going away. Without the draft actually existing yet, it’s hard to really dig into the real-world meaning of this, but for whatever these are worth, here are my comments about this and some other points.

* I am really conflicted about the possibility of ‘Asperger’s’ being taken out of the official medical vocabulary. ‘Aspie’ is such an essential identity for so many people. They wear it with pride, as well they should. If Asperger’s is taken out of the next DSM, what happens then? I think it is imperative that we work to ensure that voices within the Aspie community are valued and listened to by those in the working group who will ultimately make the decision about what goes in the DSM. I don’t think ‘Aspie’ is necessarily going anywhere as part of our vocabulary, but I am deeply interested to hear more from those who would be directly affected by all this.

From a parent’s perspective, the Asperger’s vs. autism conversation often goes in directions that I find troubling. Some parents with autistic children can get into that mindset with parents of Asperger’s children like “what do they have to worry about?” or “their kid isn’t that (or isn’t really) autistic” or “at least their kid can talk.” I’m not judging this as the frustrations they arise from come out of a lot of difficult and complex emotions within us, but I strongly believe that these are perspectives we should be working to overcome. In many ways, I think having one big tent under ‘Autism’ might help lessen some of these divisions.

I want to see the draft and hear from others before I think about this much more. The quotes from Temple Grandin and Ari Ne’eman toward the end of that NY Times article are brief but illustrative of what will be a growing number of perspectives about all this.

* Medically speaking, resisting labels beyond ‘Autism’ feels like the way to go. The DSM is only revised approximately every 15 years. Our understanding of autism seems to change by the day. By not having categories with too rigid of a description, they can (theoretically) allow for the DSM to accommodate improvements in our understanding of autism, diagnostics, therapies, etc. However, if the definitions are too fluid, then their usefulness as ways to provide specific diagnoses decreases. It’s a tough balance to reach. I’m honestly not even sure how possible this is.

* They still have to find some way to classify whatever they put in the DSM. They can’t just call them Autism A, B, C, D, and so on, though the J-Man might really love that they have letters. I’m a big believer that what names we give to things is very important. To this point, I haven’t really seen anything from the working group that talks about how they plan to address this.

* The possible outcome of having ‘autism’ or ‘not-autism’ being the diagnoses could really clear a lot of things up and make getting services for people on the borderline much easier. But within ‘autism’, there needs to be enough specificity that autistic children and adults can get the help appropriate to them in the form they need it.

* I truly believe that PDD-NOS going away would be a great thing, with one big if. If PDD-NOS (as a friend of mine called it, “hell if we know, enjoy your label”) is incorporated into the descriptions of Autism in the DSM in such a way that children currently with this diagnosis are brought more fully into the autism spectrum, then I think this is great news. If those children end up falling through the cracks, then we can’t let that happen.

* It’s still very unclear how they will actually classify what are separate diagnoses now. In addition to the diagnoses that have medical definition now like Asperger’s, PDD, etc., there are many terms we use – like high-functioning autism (HFA), low-functioning, etc. – that don’t have any medical definition. They simply exist as a way of describing your child relative to other children on the spectrum. Without specific criteria, these relative descriptions are useful for conversations to provide a frame of reference – particularly with professional service providers, educators, and other parents – but medically and especially for insurance purposes, they have no clinical meaning.

Not only does the working group have to figure out how to incorporate Asperger’s, PDD, etc. under the heading of Autism – apparently without using those terms – they also have to figure out how to describe the ’severity’ of a diagnosed person’s autism. Is there a way with some measurable accuracy to pinpoint what a child’s overall ‘functional level’ is? Is that term even appropriate? I think much better definitions of the continuum of autism are needed, but danged if I know how to even start to do that.

* I’m very interested to see whether sensory issues are somehow incorporated into the new definitions. My feeling from reading previous reports is that if they are, it likely won’t be in any real specific detail, but I’ll wait until the draft comes out to see. I have read before that sensory integration/sensory processing disorder is highly unlikely to be included as a specific diagnosis, unfortunately.

* The repercussions of this on how readily children can receive appropriate services from schools here in the U.S. are vast. I still believe that this process will lead to clearer boundaries such that schools will be much less able to deny services, but it’s too early in this process to be sure about that. A whole lot of parents of PDD-NOS children who are fighting school districts for every inch of services they get are waiting on the edges of their seats on this point. While they are the most in limbo in this process, I do think the end result will make life easier on those of you in this situation. But we must all work to make sure that’s what really happens in the end.

* The briefest question – does this all seem a lot more important right now than it will be in reality?

* And a personal curiosity of mine, will the autism spectrum actually expand as a result of all this? There was some discussion at one point about whether at least certain conditions involving ADD/ADHD (not all people with ADD/ADHD, but some subset of them) might get folded in under Autism. I don’t know where that stands now. I keep thinking personally that I may be only a short walk away from the spectrum myself. Some of the criteria for autism and what they mean certainly help me make sense of several aspects of myself that no other diagnosis previously has. More on that in a future post perhaps.

At this point, it looks like the public comment period for these changes will begin in January. In all likelihood, this comment period will go on for some time, be followed by a period where they go off and review all the comments and make changes accordingly, and then go into another comment period. They are already expecting a deluge of comments, and I’m sure everyone involved will be more than willing to provide them!

So it will be essential for all of us to contribute to this process when the public comment period begins. I’m sure hundreds of autism bloggers – including us – will keep you posted.

OK. That went on way longer than I anticipated, but what else is new. Similar Posts:

• Five Things You Can Do If You Think Your Child Has Autism
• The Clinical Definitions of Autism, Asperger’s, and PDD-NOS
• President Obama and Autism
• What’s Your Autistic Toddler Like Now? (Part 1)
• What’s Your Autistic Toddler Like Now? (Part 2)
• A-Day
• What’s Your Autistic Toddler Like Now? (Part 3)

As you may be aware, the J-man is in love with Rachel Coleman from Signing Time. In Love. We watch at least 5 DVDs per week, and depending on our ability to walk around/interact, maybe more. (Tim has been having serious back problems lately, and has actually had trouble walking.) The J-man does not actually sign, but he likes when we sign to him, and recognizes the signs. If we sign while Rachel is on, BONUS!

One day early this week, we were watching the show about the alphabet, and I was signing along with one hand, and the J-man came over to me and moved my other hand until I started signing with it as well. (This is harder than you would think!) After we had gone through the whole DVD, we started playing what I call the “Yes/No Game.” It’s surprisingly easy… the J-man comes up to me and says “yyyy” and I know he wants to play, so I say “Yes, yes, yes!” while nodding my head, and signing. Then he says “no, no, no” – and I say “No, No, No” while shaking my head, and signing. It works on taking turns, and the J-man thinks it’s hilarious. We go back and forth until I am slightly dizzy from shaking my head, and then I stop.

So yesterday, I was sitting in the man-cliner holding Dale Jr, and the J-man decided we should play the Yes/No Game. I was trying to sign while holding Dale Jr, and managed to get both hands going, when the J-man decided that not only should Mama sign, Dale Jr should sign too! He came over to us, and tried to position Dale Jr’s hands into the “no” sign each time we said “No” in our little game. Since Dale Jr absolutely adores the J-man, he laughed and laughed with each turn.

We’re probably far away from the actual ASL sign for “brother” but I think we have a good sign that “brother” is an awesome thing to be in the Flashlight family.Similar Posts:

• I Want to Play My Computer Game, Please
• We love Rachel too!
• All the Good Things
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• The $64,000 Question – Is He (Dare We Say It) Reading?

I heard this in an audiobook I was listening to while waiting to pick up the J-Man from school. An elementary school parking lot is not the most ideal place to get emotional, but I doubt anyone noticed, and who cares anyway.

It feels like it was written for parents like us. It’s beautiful, and it speaks volumes to me right now. Maybe it will do the same for you.

Hold on to what is good, even if it’s a handful of dirt.

Hold on to what you believe, even if it’s a tree which stands by itself.

Hold on to what you must do, even if it’s a long way from here.

Hold on to life, even when it’s easier letting go.

Hold on to my hand, even when I have gone away from you.

~ A Pueblo Blessing

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I know it’s been a long while since we posted something. For the most part, family life itself has been no more crazy than it usually is, but there are some areas in our lives that we know we need to make some changes in. The effort this is taking – and will continue to take for a while – has been exhausting. I think all this will result in our lives being much more like we want them to, but right now we’re just spent.

Sorry if this is a bit vague and cryptic. Nothing bad is happening, so don’t worry. It’s more that we’re making some significant lifestyle changes that will hopefully allow us to focus more on the kids, projects that are important to us, and autism advocacy both for the J-Man and for kids and parents everywhere.

I’m feeling very positive about what I think is going to come out of all this, and see this time more as growing pains than anything else. While the specifics of some of what we’re envisioning are still percolating, my excitement about it is keeping me moving forward through all the transitional stress.

We thank everyone for all of your thoughtful comments lately. We’ve been reading and enjoying them, though obviously we’ve been slack about responding. We appreciate each and every one of you and the comments you write! And we hope to catch up soon!

We should (hopefully) be resuming what passes for our normal programming in the very near future. Thanks!Similar Posts:

• Help Make Both Hands and a Flashlight Better!
• Reflections on NaBloPoMo and Writing to Become a Better Parent
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• We Get All a-Twitter
• Subscribing via FeedBurner and Other Meta Goodness
• Get Both Hands and a Flashlight Delivered to Your Door! (sort of)
• Both Hands and a Flashlight 2.0 Coming Soon

This is simply awesome. Kyle Forbes, you rock!

If video player messes up, look for “Autistic Cub Scout Saves Teacher’s Life”. Similar Posts:

• Surfing Therapy for Autistic Children
• How One Father Sees His Daughter
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[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.

So what is a flexible spending account? A more elaborate explanation of it is available on Wikipedia, but it more or less boils down to this.

You decide ahead of time (during this open enrollment period) how much you want to set aside for medical expenses for the next year. When the new year starts, money is deducted from each paycheck pre-tax and deposited into this account.

Example: If you decided to put $2,500 in your flexible spending account for 2010 and you are paid every two weeks, for every paycheck, 1/26th (26 paychecks in a year in this case) of that total amount is deducted before taxes from your check. $2,500 x 1/26 = $96.15 deducted per pay period.

Then, during the course of the year, you can file your medical expenses against that account and get reimbursed. Let’s say you haven’t met your deductible yet and your child’s OT visit is $125. Get a receipt, file it, and get reimbursed. For a growing number of people, claims filed with your insurance company get automatically routed through your flexible spending account so you don’t even have to file those to get reimbursed; it just happens.

Yes, you are getting reimbursed with your own money, but there are two huge advantages to this whole system.

1. That money isn’t taxed like the rest of your income. Without this account, you’re paying for health care expenses with money you’ve already paid taxes on. With this account, eligible expenses can be paid with money that you never pay taxes on. It’s not free money, but if you are in any sort of tax bracket, your savings for the year can easily get up to 15-30% or more. That really adds up. We figured we saved $2,000-3,000 this year because of that.

2. The wonderful principle of “pre-funding”. Same example: If you set aside $2,500 for next year, on January 1, all of that money is available to you for reimbursement. Yes, if you stay employed at that company through the entire year, you will pay that $2,500 into it by the end of the year, but let’s say something happens and you spend all of it on eligible expenses by February and ‘empty’ the account; that’s fine. While you won’t be able to get anything reimbursed for the rest of the year since the account is now empty, you essentially just got a 0% interest loan that you can pay back over the rest of the year with tax-free dollars. Not a bad deal.

These accounts have saved our bacon over the last couple of years. For 2008, we put $5,000 toward flexible spending (which we set six months before the J-Man’s autism diagnosis) and spent it all before May. However, by that point we had only contributed about $1,500 into the account. Sure we paid the remainder over the rest of the year, but again, it was pre-tax money and no interest. This year, with the baby and all, we put in $9,000. And it looks like we hit it just right. Next year, we’re dropping back to $5,000.

[Another note - companies are given some flexibility on where to set the maximum amount you can contribute into a flex account. The general rule of thumb is - the higher the deductible on your policy, the higher that maximum will often be. Our deductible is awful, so our max is quite high.]

And yet more good news! What qualifies as an ‘eligible medical expense’ is much broader than you might think. A good rule of thumb is that if your health insurance covers any of it – or it at least applies toward your deductible – it’s likely eligible. If you pay co-pays for anything, those almost always get reimbursed. If it’s a prescription – covered or not by your insurance – that’s almost always reimbursed. Eye doctor, glasses, contacts, dentist, etc.? Typically all reimbursed, too. But just because no insurance company would ever cover it doesn’t mean it’s not eligible. Things like contact lens solution to over-the-counter medicines to Band-Aids are usually eligible for reimbursement too.

Many stores are starting to note eligible items on their receipts. The image below is from The-Store-That-Shall-Not-Be-Named.

At Target, they put a ‘+’ next to the price of each eligible item on your receipt, along with a “Health Item Total” with an amount next to it at the bottom of the receipt. They have a helpful explanation of this on their web site. Sure makes dealing with those receipts a lot easier.

Also, 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.

Also, Vanguard has a nice article that I received the other day. Not sure how long it’ll be available, so get it while it’s hot. It not only addresses flexible spending accounts but dependent care accounts (also very useful) and other tax-savings opportunities.

When it comes to autism, most everything related to more ‘traditional’ therapies (OT, speech, developmental therapy, etc.) seems to get reimbursed with few, if any, problems. We didn’t try to get reimbursed for therapy equipment we bought for the house (peanut ball, therapeutic listening headphones, etc.) because by that point we’d emptied our spending account for the year, but I have heard that people have had good success getting those reimbursed. Usually you just file a “letter of medical necessity” (which is typically available as a form from the spending account administrator) filled out by whomever you’re seeing for therapy to the administrator of your spending account along with a receipt for whatever equipment you purchased, and this seems to work for a lot of people.

Since we do very little of what is typically considered ‘biomedical therapy’, I can’t speak to the reimbursement success rate there. Getting a doctor to sign off on that letter of medical necessity definitely improves your chances, but expect that some things that don’t fall into the eligibility categories might be denied.

So, what’s the catch? Here are a few things to be aware of.

* “Use it or lose it” – This is the one that usually shies people away from using a flex account, but it shouldn’t. Whatever you don’t use by the end of the year, you lose that money. It doesn’t carry over. So people feel pressure to estimate exactly, but in the process of worrying about losing that money, they underestimate badly. However, in many cases now the ‘year’ extends about 3 months into the following year – 15 months or so total – as a ‘grace period’. Unless you’re off by a couple thousand dollars, given that you can get reimbursed for everything from cold medicine to contact lenses, you can usually find ways to spend anything you’re in danger of losing, even if it means stockpiling Advil and saline solution for the next three years.

* On a related note, it can hurt your brain trying to calculate how much you should set aside for the next year, so much so that you end up not trusting your numbers. Our rule of thumb is to start with our deductible – which is way too high – guesstimate when during the year we expect to meet our deductible, and make reasonable estimates of how much the rest of the year will cost based on previous years’ expenses. (So deductible + estimates for remainder of year = total contribution for us.) We can download a spreadsheet of data about our health insurance claims from the previous year, delete stuff we know won’t happen again (like a baby), factor in possible changes to medications, co-pays, and whatnot, and go from there.

If all that is too much to bear, concentrate on your major expenses (peds visits, medications, therapies, etc.), add those up, and throw in a fudge factor. If figuring just those things gave me a number of $4,000, I wouldn’t hesitate to make my flex account $5,000 for the next year given all the other random expenses we end up having.

* Getting money taken out of your paycheck is scary. If you are charging all your health care expenses to credit cards or are paying installments directly to the service provider and you know you have no way of paying that off within 12 months – which I know happens – then my suggestion is to consider contributing as much as you can to flexible spending without compromising shelter, food, and clothing. Again, since it comes out pre-tax, you will save some money over the course of the year and come out a little better when tax time rolls around. Short of declaring bankruptcy, you will have to pay something toward all your health care expenses, so you might as well get some tax advantage out of it.

* If your employer doesn’t offer it or if you are unemployed, flexible spending accounts can be a big pain to set up. However, more and more financial institutions are offering these accounts to customers independently of their job situation, so look around. It’s more work for you, but it’s worth pursuing.

* If you have to file claims for reimbursement manually, it can be a hassle. It usually involves completing forms, photocopying receipts, and faxing or mailing stuff in every time you want reimbursement. To me it’s still worth it, but now our plan automatically files things that are processed through our health insurance, and that money is then direct deposited into our bank account, often before we even get a bill from the doctor’s office. This is becoming more the trend because it saves the claims people money too. Some plans even give you a debit card to pay for eligible items straight from your flex account. However, if you have to do it all manually, you probably will not bother sending in receipts for that $3 bottle of Tylenol unless you get desperate, so keep that in mind.

* Things used for health ‘maintenance’ – for lack of a better word – like vitamins, supplements, etc. are usually not eligible. However, if they are things that your doctor wants you to take or use to treat a specific medical condition – and will attest to that on a written form – they may end up being eligible. (”to treat a specific medical condition” is a useful phrase to commit to memory when wondering whether something is eligible.)

* I think insurance premiums are not eligible, especially ones that are taken out pre-tax from your paycheck.

And lastly, if you need a good laugh (or at least I thought it was funny), read my post from last year about the more humorous side of eligible expenses.

Bottom line – this sounds awfully confusing at first, but it’s not that bad when you get the hang of it. And the savings to you can be enormous. In three years, we’ve saved a few thousand dollars! Take the plunge. You’ll be glad you did.

Standard disclaimer: I’m not a tax professional or an expert in this at all. It’s debatable whether I’m that intelligent period, but that’s another story. Listen to me at your own risk! Consult your benefits administrator, a tax specialist, or your Cousin Vinny if you have any questions about this as you fill out your benefits papers.Similar Posts:

• Autism, Medical Expenses, and Tax Time in Our Family
• Fun with Flexible Spending
• The deductible record will stand another year
• Could Taxes Possibly Be Any More Complicated?
• The Cost to Raise a Child and Yet More Autism Disparity
• In which I say, “Have you ever had a child?”
• How Much is a Bed Worth?

[coupon codes at the end of the post!]

If you read any of the “Who was born or what happened on my birthday?” sites, you may have noticed that October 9th may be one of the most boring dates there is. I really tried hard as a kid to find something worth getting excited about that happened on my birthday. You know, besides me being born.

Admittedly, John Lennon’s birthday was October 9th. OK, that works. But it’s some serious kind of steep drop-off to the next tier, which includes Scott Bakula and Zachery Ty Bryan (one of the kids on Home Improvement, don’t ask me which). No offense to either of them or any other October 9ers, but we don’t seem to be a noteworthy bunch. Apparently Cervantes (Don Quixote) was also born on my birthday, which I’ll admit isn’t bad. Then there’s Trent Lott, which is just plain wrong.

To take the “This Day in History” route, October 9 was one of the most boring days in history too apparently. Phantom of the Opera opening in London on this day is fairly OK. But then you get stuff like “Isaac Singer patented the sewing machine motor” and “Joshua C. Stoddard received a patent for his calliope.” Yay! The Calliope! And supposedly Leif Ericson discovered ‘Vinland’ (and lobsters and chowder I guess too) on this day around 1000, but I question how they even know that since they don’t even seem to know what Vinland is.

But then I recently discovered something that made me smile. As I’ve said before, there are a very few women in the J-Man’s pantheon of goddesses. In that tier right below Mary, there’s Laurie Berkner, his Pre-K teacher Mrs. Jennifer, and someone who I learned I happen to share a birthday with – our Blessed Lady of Signing Time, Rachel Coleman! Finally someone cool to share a birthday with!

Rachel has commented here a couple of times and I talked to her a bit by e-mail several months back. She has not only been an important of his life and our family’s life since he was a baby, she showed him extraordinary generosity by sending him an amazing package of gifts. And the work she and the rest of the Signing Time gang do for children of every ability is worthy of all the praise they get. She has set the October 9th standard very high, so the rest of us have some work to do. We’ll give John Lennon a pass, though.

In honor of our momentous day, I got some coupon codes from them via the Happy Birthday Rachel Celebration e-mail if you are looking to get some Signing Time DVDs. (OK, so the coupon code has nothing to do with my birthday.) It’s 35% off a single DVD for October 9 only (Promo Code – RACHEL35). There’s also a 10% off deal going on if you buy 3 or more DVDs until the end of the month (Promo Code – BUNDLE10).

The mathematically astute among you can take the fact that I am exactly one year older than Rachel and the number on the coupon code and deduce how old we both are. That’s as much as I’m telling, though the same astute people will also figure out that I’ll now be a ‘perfect square’, which seems only fitting…

[Disclaimer - Yes, those links above are affiliate links. Any proceeds that come in to us from them will go to an autism-related charity. We are huge fans of Signing Time and cannot recommend them enough. If you go straight to SigningTime.com and skip our links, that's great too. They deserve your business regardless of how you get there.]

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• Happy World Autism Awareness Day!
• Happy 105th Birthday, Dr. Seuss!

“Our truest life is when we are in dreams awake.” – Henry David Thoreau

“The dream was always running ahead of me. To catch up, to live for a moment in unison with it, that was the miracle.” – Anaïs Nin

Today, a dream of mine became real. You know, those wonderful dreams you have deep in the night when you see your child doing something extraordinary – something that normally, in the light of the day-to-day challenges, you aren’t sure you could dare to dream possible.

But first, let me take you on a little journey.

Every new word has so far been a four-year-long struggle for our J-Man. Much of that time has involved us interpreting the pitch, cadence, and general patterns of his audible communication from moans to sing-songy vocalizations. We’d always talk to him, though, as if we were all having a ‘normal’ conversation together. I admit, I grew very accustomed to having whole conversations where I supplied both our speaking parts, like a one-person play.

Then came single syllables, which much later become first syllables of more complex words. Then in a few more months, like people reading wedding vows but repeating them one syllable at a time, we began to construct complete words, then very short sentences. We’ve now gotten through entire children’s books that way, slowly but surely, one syllable at a time.

Until pretty recently, most of his talking – in whatever form – has been in some way prompted by us, whether ‘asking’ him something or just getting him to repeat something back to us. Getting to “I want” was a huge triumph. For a long time, we had to say “I want” for him, and then he would tell us what he wanted. Then he started doing it himself, and one syllable at a time, we began to better understand his wants and needs.

It often goes:

J-Man: “I”
Person he’s talking to: “I”
J: “wuhn”
Person: “want”
J: [says what he wants, like his word approximation for 'apple' (for applesauce), 'sss-ts' (socks, when he wants to go somewhere), etc.]

Recently, the meaning of “I want” has expanded into including something like “I want to show you this”, and he tells us what that is after “I want”. It even has taken on connotations lately of “I need help with”, though we’re working hard on adding “I need help” to his vocabulary, with some success I might add!

But one thing you may have already noticed in all this is that most all of the things he’s (verbally) wanted for most of his four years are things, objects. What has completely lit our hearts up in recent days is that he’s now beginning to tell us he wants something else – us.

He crawled in behind Mary on the couch, and we did one syllable at a time, “I – want – Mama.” Let that sink in a moment.

Maybe the vast majority of the parents on the planet with young kids had this happen to them lately, if not today. How many times have you heard a child shouting “I want my Mommy!” to the rolled eyes and exasperated responses of those looking on? How many times a day do these words go unnoticed really by anyone, except to think of them as some sort of tantrum?

How many times have those of you with non-verbal or minimally-verbal children thought something like, “I would give up everything I own – even a few body parts if need be – if my child could say that to me, just once?” I have, plenty of times.

Tonight the J-Man was very tired at bedtime. We had clipped his fingernails right before his bath, which always sends him into a sensory tailspin. We got through the bedtime routine pretty well and turned out the light. I put him in his bed, said all the things I usually say to him, and then began to walk toward the bedroom door. He began to sob and cry out pitifully.

“You’re OK, buddy. You’re OK.” I said reassuringly. “Everything will be OK.”

“I-I,” he replied in his tearful voice.

“I,” repeating that syllable as we always do.

“wuhn.”

“want.”

“Dee-dee.”

Daddy.

After a stunned moment – or many moments, I don’t know – I walked over to his crib. He became quiet, stood up in his bed slowly and peacefully, and held his arms up to me, which I took in mine. We stood there in his bedroom swaying back and forth, with his head on my shoulder. I could feel his body sink and relax.

We swayed there in the almost-dark, his room illumined only by a small nightlight shining on the far wall. But it was enough light for me to see all the perfection and beauty of this moment, this wonderful and real moment that could now take the place of my dream.

After a timeless while, I asked him, “Do you want to get in your bed now?” He looked up and kissed me, a long-time part of his J-Man sign language for ‘yes’.

So, I helped him into his crib, told him good night, and slowly walked out of his room with tears still in my eyes, the kind of tears many of you know too. They are the ones that renew us in the present and water the seeds of wonders and dreams that are yet to come true. Similar Posts:

• Many Ways to Say ‘I Love You’
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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.

• A lot more mimicking lately, like patting knees and clapping hands and other motions in songs and books like patting his head, stomping his feet, or shaking his head! Perhaps these developing skills are leading him to being able to sign, learn more motor and play skills, and more. If you think about it, mimicking is at the core of so many therapies, so the value of this skill cannot be overstated, especially because it’s a huge challenge for so many of our kids.

  He actually signed ‘clean up’ while watching Signing Time! He has pretty much never signed anything except ‘more’ and ‘finished’. As I said, mimicking anything has been extremely hard for him, and learning sign and then signing back to someone has been nearly impossible for him so far as a result. And he’s not just signing it; he’s actually been helping clean up after eating some. I know he does this at school, but doing it without prompting at home (sometimes – not all the time yet!) is great!

• He’s verbalizing a lot, lot more both to the TV and to us during his favorite shows – particularly Signing Time! He’s repeating some of the individual words he hears, but he’s also doing it sometimes for what he sees and reads. He pointed out a frog and a pair of shoes on the TV to me just today (joint attention in a shared activity!) and has been reading all kinds of words on the screen. Fun note – we found he loves the on-screen channel guide on our cable TV; it’s like a word wonderland.
• He’s pointing out words in just about every other context too. It’s always amusing to see what word or two out of a whole page or screen that he picks out. One that always makes me laugh is ‘com’. He loves anything that ends with .com it seems. (He leaves off the ‘dot’ when saying it.) That’s my boy!
• He’s also starting to identify some more objects with pointing and words, without any prompting. He just wants to tell us about them! We haven’t figured out any pattern to the objects or what is significant to him about them, but no matter. It’s just great that he’s starting to do this more with us.
• And yesterday he used two words together to describe some things! It took me a minute to figure out what he was pointing at, but they were some tiny colored circles on the back of a puzzle board. Usually if he’s in the mood to tell me, he tells me the colors of something (usually shapes or crayons or solid color squares). But for a minute or so he went through telling me about the ‘purple circle’, ‘blue circle’, ‘circle green’, and so on. (He used his word approximations for the ones he can’t say as clearly. And who cares if he switches the word order!) He’s been learning at school that things can have multiple ways to describe them (e.g., a big, green circle), but has usually needed visual prompts – like Boardmaker pictures – to use. He did this with his own words with no prompting. Big ol’ yay!!
• He’s also been more willing to play with new toys and books lately. In the past, it’s taken quite a while – sometimes weeks, if ever – for a new toy or book to get looked at let alone played with. He’s had like an ‘inner circle’ of toys and books, with members that rotate in and out based on what’s interesting to him at any given moment. Since his birthday was not long ago, he’s gotten quite a few new toys and books lately. He has been quick to check them out, play with them a bit, and then decide whether he wants them to hang around or not. I don’t much care whether he likes a particular thing or not, but his openness to explore and experiment is a great thing!
• We took a long car trip recently to visit my family. He did amazingly well on the ride up and back and really hung in there with what I know was an exhausting visit for him. We get up there only rarely, so it’s mostly people he doesn’t really know. The days were long, and he had to sleep in a strange bed in a strange room, which meant he wouldn’t go to sleep without us staying with him until he was completely out. This meant he went to sleep 2-3 hours later than usual while still getting up at the same time in the morning. He was completely exhausted, but he handled it all very well. I know that was hard for him.
• This was a one-time thing, but the problem solving skills he showed amazed me. He wanted to carry an almost full cup of tea to the couch and sit down with it so he could drink it and watch TV. Problem was, he couldn’t figure out how to pick it up from across the end table next to the couch and then sit back down on the couch with it.

  So, he got off the couch, went over and picked up the cup from the far side of the end table, carefully moved it and positioned it on the other side of that table right next to where he sits on the couch, and then he climbed back up on the couch. The cup was positioned right next to where his hand naturally ended up. This may sound extraordinarily simple to most people, but this really is quite a skillful maneuver on his part. It seems a very natural thing to try to just sit down while holding the cup, but he realized that wasn’t going to work so he paused, thought through it, and figured out an alternative way that would work, one that I’ve never seen him try before. That took a lot of reasoning, creativity, and motor planning to put several steps together like that. That was so cool!

And these are just some of the things at home. School is like a whole other huge set of awesomeness.

We feared that the three-week break from school arriving right as he was making this great progress would set him back, but it hasn’t seemed to a bit. Yay!Similar Posts:

• Shining More and More! Quarterly IEP Report
• Climbing Up the IEP Goals Ladder – “What a Great Quarter!” Edition
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• We love Rachel too!
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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!]

Not so much on the horse thing yet… but hey, he’s on!

Get me off this crazy thing!

He’s hanging in there! (or holding on for dear life!)

Oh! Maybe, just maybe…

Sitting almost like a little jockey. Notice how he’s sitting relaxed and holding on to the saddle instead of us!

Here’s he’s getting closer to looking like John Wayne leaning back in the saddle and striding confidently into town or something. Yay!

So, do you feel lucky, punk?

And the victory hug! Yay, J-Man!Similar Posts:

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During the last 2 weeks, the J-man has shifted into high gear. Suddenly, he can do some of the movements to the morning song at school. They’ve been singing this SAME SONG since, well, forever, and something just clicked. Now he is starting to follow along some of the movements with a slight physical cue (touch to his hand) or even a verbal cue (pat your head). He has been playing a game with one of his teachers, Mrs. Cindy. We call it “Pat, pat, pat, pat” at home, because according to what the J-man does at home, it starts with patting the legs 4 times, then clapping 4 times, then patting the legs 4 times, then doing Wonder Twins fists with the other person and bringing both arms up to say Blast Off! He is so proud of himself when he does that, and of course, we are proud of him too.

Think about how much motor planning that little game takes. Patting your thighs: make sure the hands are open, make sure both hands are doing the same thing, actually hitting the thighs but not too hard, and doing it 4 times. Then, SHIFTING to open-hand clapping (the J-man normally claps his fists but not in this game): hands open, arms moving in such a way at the same time to clap them together while SAYING “clap, clap, clap, clap.” Shift again, back to patting thighs. Then, put both fists out to touch the other person’s fists, bringing both arms up at the same time (still touching fists) AND saying “Blast Off” (or the J-man’s approximation of those words).

Now, try to imagine programming a robot to do those things. I know, you’re probably not a programmer, but think about all those steps, and how carefully each would have to be coded. Think about the pages of code that would take. Now imagine that each time something is repeated, you can’t just copy/paste the same code – you have to recreate it, and you don’t have your old code there in front of you, and in fact have trouble even remembering how you came up with that code.

That, I think, is how the J-man has to do it. He has to carefully think through EVERY SINGLE INDIVIDUAL MUSCLE MOVEMENT, big or small. He has to put all those single individual muscle movements together, but because of his motor planning issues, he has to re-think about how exactly one makes that muscle move. For everything. Every time.

I liken his motor planning issues to my inability to dance. I’m not talking about those people who say, “I can’t dance” and then go out and while not the best dancers, can at least do the Clap and Step of every junior high school dance. I mean, I have trouble watching someone do a step, and then repeating that step, because I have to seriously consider what FOOT they started on. Add hands, or any hip shaking whatsoever, and I’m lost. (I was an absolute riot in aerobics class the 2 times I took it.)

So imagine if my whole life was having to dance every day. I could definitely spend an entire year absolutely not getting a dance. I had to learn a dance in the summer before 10th grade, and I still remember it, because it took me having the instructor come over and actually MOVE MY FEET INTO POSITION as she broke down every step. I cried over it, because I was so bad. I can’t imagine doing that every day. It’s been over 20 years, and I still remember how hard that was for me. I wasn’t happy when I learned it enough to stand in the very back and not really let anyone see me, but I was relieved. I wasn’t proud.

And think… my kid does that every day of his life for every move he makes. And he smiles during it. And is incredibly proud of himself.

BLAST OFF indeed.Similar Posts:

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Given the struggle things have been lately, I’ve needed as much inspiration as I could find to help refill my bucket. I have a half a zillion autism parents blogs bookmarked in my RSS reader, and I am woefully behind on them. But that’s one of the places I often go to find words I need to hear.

With so many of you, we read your blogs for both inspiration and realism, hope in things not yet seen and practical ways of dealing with what we see right in front of us. You have helped make us better parents and better people.

I’ve been thinking about creating a separate blog where the posts are primarily links to the great stuff we find on your blogs. You all write such amazing things!

Which brings us to such a post for today. MOM – Not Otherwise Specified (MOM-NOS for short) wrote “The purplest” , the story of her son’s 10th birthday. No commentary needed, which would detract from its beauty and perfection anyway. Just go read it. Cry, cheer, and let it make your day like it did mine.Similar Posts:

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If your child is one of the 123,145,845,318 (give or take a few) autistic children who are fanatical about Thomas the Tank Engine, then your child’s ability to be flexible with change is about to be put to a serious test.

For reasons completely unknowable, the makers of Thomas the Tank Engine have decided to give him an extreme makeover. Going from the very 2-dimensional-looking Thomas-iverse to a high-tech, computer-generated, whatever-it-is seems radical enough, but he’s going to talk too?! (Go there and read the ABC interview with Thomas – not kidding. I saw it on TV myself. I dare you!)

It all hits the fan with the release of Hero of the Rails – The Movie on DVD.

Before

After

We honestly consider ourselves lucky that the J-Man couldn’t care less about Thomas. I confess I’ve recorded a couple of episodes just to see whether he’d even look at it. Nada. Phew.

But I know that Thomas is deity-like in the lives of many autistic children, and the lives of countless parents orbit around Thomas and Friends as a result. We just wanted to warn you all… Consider this our public service announcement.

(An oxygen mask will drop from the ceiling in front of you shortly. Good luck.)Similar Posts:

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I wish I had some brief, non-whiny-ass way of talking about this, but it’s just going to be what it is. This is a subject many of us avoid because we don’t want others to think we’re weak or talking negatively about our life as parents. But tonight I feel like being honest about it.

Someone once gave me the most appropriate term that I think exists for how I’ve felt the last few days.

I am bone-weary.

It’s a good thing I recently read an absolutely brilliant blog post by Rachel Coleman (aka Rachel of Signing Time!, also aka J-Man’s Secret Crush) called Strong Enough to be Your Mom. I highly recommend you go and read her moving story.

The day after the J-Man’s annual pediatrician’s visit about two weeks ago – where I had to carry him around for an hour and do some awkward holds during the exam – I started to feel a building pain in my low back. And it just got worse and worse. Within hours of when it started, it got to where I couldn’t bend more than a few degrees from vertical in any direction. I couldn’t sit and I certainly couldn’t sleep. I took some ‘real’ pain pills (which I only do when it’s really, really bad), and I might as well have been eating candy.

I went to my chiropractor last week. His diagnosis was that it’s a compression-type of back injury where my lower vertebrae all got jammed together – from that hour carrying the J-Man around and all the stress I put on my back while holding him during the exam. Those vertebrae more or less got shoved together and locked, which not only was as fun as it sounds but caused a whole lot of swelling. End result – it hurts.

I turn 36 in a month. And Mary has had to put my socks on for me a few times since this started. I couldn’t reach my feet no matter what I did. I would have sat there and cried if I wasn’t distracted by a dozen other things.

I’ve had chronic low-back pain for the vast majority of my life. I have structural defects in my spine – primarily in that same low back area, including a special, sort-of-extra vertebrae hardly anyone else has – that will permanently cause stresses in my back that can be addressed only so much. To a certain degree, I’m going to have to live with some level of pain.

The reality is, I had better find some way to live with it better than this.

On top of that, either a cold, seasonal allergies, or both have swept through our part of the world, making everyone but Mary sick these past couple of weeks. The J-Man stayed home from school Friday before last, and with the Labor Day holiday, it ended up as a four-day, locked-up-in-the-house, stir-crazy adventure for all of us.

When the J-Man is sick, everything tends to fall apart in our routine. Even the most minute variation in certain routines can send him off a cliff during most any illness. In average circumstances, he’s got somewhat of a buffer zone in which he can be pretty flexible with things. If he has some difficulty regulating some of his emotions, he can work through it pretty quickly. For several days, it was like someone cranked up his dial to maximum on everything in the world that bothers him.

I can’t remember the last time I’ve seen him like that, even during much worse illnesses. It really caught us off guard. Before, we’ve tried to keep to routines, but haven’t had to worry about every little minute detail of them. For several days, we had to scrutinize – and still do to a noticeable degree – every meltdown situation – and there have been a lot of them – to try to figure out where the train came off the track.

This has meant that he’s needed help getting through just about every part of his day lately. Normally this would be something we can team up on and handle, but the techniques we use during sick time (e.g., lots of deep pressure, lots of carrying him around and holding, even no small amount of restraining to get medicine into him and lotion on his face where all the snot makes his skin raw) can be very physically challenging. This time has just felt like one mountain too big for me to climb.

My body feels ground-down, like a nearly-used-up pencil. As Mary said in her post about the 11-year-old at the doctor’s office who was trying to escape at all costs, the realization that there will come a point where physical approaches to situations simply will cease to be options for us is one that has filled me with foreboding these past several days.

Up till now, it’s worked well enough for me. It can be difficult, but I weigh almost 230 pounds and am about 6′ 3″ tall. Let’s just say I have a lot of leverage. The J-Man hasn’t quite made it to 40 pounds yet, and when in doubt, I’ve always been able to carry my weight and his. I can carry him around for long periods of time if he needs the comfort and hold him in frantic situations when called for. But I’m hitting up on my limits in a very clear way these past two weeks, and the implications of that are disturbing to me.

But this is where Rachel’s post helped me to clue in to what all this means. There are certain things I’ll never be able to change – he’s getting bigger and I’m getting older. There are certain truths about him in this equation – he’s not at all doing this to hurt me and none of this is his fault.

And there’s one very clear truth that’s all about me. I’ve let my body get to this point.

I’ve treated my body badly. I’ve fed it all sorts of unhealthy things. I’ve abused it quite a bit with stress and lack of sleep and overwork. I haven’t exercised or done anything positive to help it be in the shape it needs to be in to be the kind of parent I need to be.

It boils down to this realization – to borrow from Rachel’s blog post title – right now, I’m not ’strong enough’.

In the past, I’ve trained for vague goals of wanting to lose a bunch of weight or run a marathon or run a fast 5K or something my heart wasn’t as much invested in as I pretended it was. Again, as Rachel says in her post, she realized she wasn’t training for any of those things.

When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

When I read this, I wept. And I’m weeping again as I write this. Thanks, Rachel. I finally get it now.

I used to run – a lot. In grad school, I was running 35 miles a week at one point. I remember 16-mile runs on Saturday mornings becoming almost effortless. Now, running 2-3 miles is a major effort. But while I was out jogging recently (a couple of days before the peds visit…), struggling along, I let all the old running instincts of tracking time and pace and distance start to fall away. All those mental calculations of training pace vs. race pace went back into ancient history where they belong.

I tried instead to imagine myself standing taller as a father, with a body strong enough to meet the challenges that lie ahead.

Again, Rachel says it beautifully.

We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”

…

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

It’s not about getting to put a 26.2 sticker on my car anymore or bragging about how many miles I can run and how fast, and I sure won’t be bragging about that ever again anyway!

I’m looking ahead now at ways to train and treat my body better to achieve just one goal – to be strong enough to always say “Yes” to my kids.

Our kids deserve nothing less than my best. I don’t want to be the dad of “no” or the dad of “I can’t” or the dad of “maybe later” or “not today.” This means some major lifestyle changes for me, something I’ve always been terrible at making. But now I have the greatest motivations in the world. And it’s time to start saying “yes”.Similar Posts:

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Many, many years ago in elementary school, my teacher gave us the assignment of asking our parents whether they remember exactly where they were and what they were doing when President Kennedy was assassinated.

She made a little wager with us. “Anyone want to guess how many of your parents will remember?” Someone said something like, “My mom can’t even remember to pack my lunch,” which got laughs and summed up our opinion pretty well. I don’t think any of us believed our parents could possibly remember it in any real detail. My teacher simply responded, “All of them will.” We all thought she was crazy.

I remember all this because of the amazement I felt the next day – in a way I’d never remotely experienced before – when we discovered one by one in the class that she was right. I still haven’t forgotten the impact this had on me.

As elementary school children in an era still without momentous single events – though I do remember watching the first Space Shuttle go up on TV at school with quite a lot of detail – we lacked any context for understanding how someone could remember something in such perfect detail for so long.

I can narrate almost my entire day of Sept. 11, 2001 in enough detail to talk about it for the better part of an hour. Compared to many others, it’s not terribly interesting or compelling, but it’s how I carry my memories of that day; it’s how I have chosen to never forget.

I’m experiencing a very strange feeling today. I wonder whether the J-Man will ever have that assignment in school, to ask me someday what I remember of that unspeakably awful Tuesday. Will he too be amazed at all the details I will carry with me for the rest of my life?

Then another question popped into my head, Will he appreciate the emotions and gravity and tragedy of that day enough for its significance to register to him? Is that even a fair question? Is any of this any different for an autistic child vs. those who aren’t? Aren’t all children just like I was back in elementary school, unbelieving that our clueless parents could remember such a thing, especially because we’ve become the parents who regularly lose car keys and everything else?

For whatever reasons, remembering life-changing events and people and places and stories – and all the feelings around them, whether joyous or tragic – is an important part of who I am. I have a hard time understanding people who aren’t like this. Soaking in and processing the myriad emotions and interactions of others in most any situation is almost like a reflex to me. (Understanding my own is a far different story.) It seems likely that the J-Man will process events and defining experiences like these quite differently.

This is neither good nor bad, of course. Perhaps it’s that today I’m in touch with how much I don’t understand about how he sees and makes sense of the world. That may sound obvious, but the breadth and depth of my ignorance seems more palpable by the day. Last night I found myself desperate to figure out what’s most important to him. I know that’s a whole lot – and probably something impossible – to ask of a parent and a four-year-old.

Lately I’ve been doing something I very rarely do – thinking about what school will be like for him down the road, and more broadly, what the future holds for him. And just this second as I write this sentence, I figured out why.

I desperately want to be able to share experiences with him. I want to be able to share in something with him and us talk about it and each of us understand and appreciate what the other sees and feels about it. I want to be able to sit with him and say, “Do you remember that time we…” and have us both draw on common memories and laugh.

As he helps me remember all the essential parts of who I am and what matters in life, my hope is that I remember things that are important for him and help him do the same. Maybe this is how we build our story together and keep moving on, regardless of what has happened – or may yet happen – to us.

For today, we remember everyone whose lives were irrevocably changed on that terrible day. We give thanks for heroes and remember all who were lost and those who love them.Similar Posts:

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I’ve been thinking lately about the Just People. And the Should People. And especially the Should Just People.

You know them. You may have even been them. I sure was!

“Why don’t you JUST make him do it?”
“You SHOULD go GFCF because it helps all kids with autism.”
“You SHOULD JUST ignore him when he does things like that because he’s only pretending that it bothers him.”

There are the My Child People, the In My Day People, and the All Kids People.

“MY CHILD would never be allowed to act like that.”
“Well, IN MY DAY, parents actually parented instead of this “make sure his needs are met” stuff they do now.”
and my favorite:
“ALL KIDS are (insert some small issue compared to all the other issues) at this age so why do you think it’s any different for you?”

Well, I’ll tell you what…

If you JUST listened to parents or to people with autism, you might understand better. You SHOULD do some research on your own and not believe everything Jenny McCarthy says. You SHOULD JUST ignore people who go on TV and make blanket statements about people with autism. MY CHILD is acting in a way that makes sense to him at this point. IN MY DAY, we parent by making sure his needs are met. ALL KIDS are special in their own ways, no matter what you think.

Maybe if we all remembered all of that, we would in fact realize that people with autism? Are Just People too.
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Wednesday we were at the doctor’s office for the J-man’s 4-year check up. (He’s doing well, thanks!)

While we were waiting, we watched a drama unfold outside, and it made my heart hurt. A boy, perhaps 11 years old, was fighting with all he could muster to NOT come into the doctor’s office. He broke away from his parents several times and ran, not looking where he was going, just running in a desperate attempt to not have to come into the office. At one point he tripped (the sidewalk turned sharply and he didn’t) and went head-first into holly bushes. Holly bushes. So then he was scratched and bleeding. The parents were doing their level best to get him inside.

Tim and I looked at each other and nodded. Boy with autism. We can pick each other out now.

We learned that the parents had given him a massive dose of Ativan to try to calm him, because he HAD TO come in and get a tetanus shot. He needed that shot. The Ativan didn’t work. (As we were waiting to get flu shots while we were there, we heard a loud cheer for him, because they had gotten him inside, and he had received the shot… so they did finally get him calmed enough.) The nurse didn’t seem surprised that we knew the child had autism – she said it was pretty common for parents of children with autism to be aware of others.

There were parents there in the waiting room judging that boy’s parents. I could feel them and hear whispers (not what they were saying, just the whispering voices). And I knew they had NO IDEA what those parents’ lives were like.

And I could only watch, wondering if we were going to be those parents one day. Right now, the J-man is small enough that we can overpower him (see also: holding him down for shots, and holding him in our arms before and afterward), but there will come a day when that can’t happen.

I don’t have a nice way to tie up this post. There’s no “all’s well that ends well.” Similar Posts:

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Today marks the first anniversary of the J-Man starting school. His first year in the Pre-K autism class at the nearby elementary school has been better than we even dreamed possible.

We are thankful beyond words for all that his teachers and therapists have done with and for him, for their amazing skills and creativity, for their kindness and love for him and for all their students, and for everything they do to help the J-Man and all the children there to let their lights shine.

His elementary school is – at least in our opinion, but we know we’re right! – a standard-bearer for other schools in our county and state, and frankly anywhere. Little did we know five years ago when we moved into our house that the J-Man would come into our lives and fill it with his presence, and a tree-filled lot two miles away would become an elementary school a couple of years later, and that school would become such a place of caring and learning and achievement for our son and for so many students. It’s funny how all these things come together like this.

We offer our deepest gratitude to the administration, teachers, and staff of Harris Creek Elementary, and especially to Mrs. Jennifer, Ms. Megan, Ms. Cindy, Mrs. Jamie, Ms. Vroom, Ms. Stephanie, Mrs. Stacy, Ms. Heidi, Mrs. Nancy, and everyone else who works with the J-Man and has helped him so much over the past year. (God help me if I forgot anybody! Y’all let me know if I did!)

We start his second year filled with hope and excitement! On we go!Similar Posts:

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Our low-key approach to his birthday was a good move on our part. He seemed to enjoy this as much as any ‘observance of his birthday’ ever. (Definitely not a party animal.)

The weather was just achingly beautiful today. It never got above 76 degrees, was sunny all day, and felt like pure magic in the shade. I put together his big present while he was at school, and we spent the late afternoon together outside enjoying it.

The ’some assembly required’ (taxing to its limits my visual and spatial acuity for threading straps) paled in comparison to his complete bliss in his new swing. He long since outgrew the ‘bucket’, and swings for bigger kids don’t work because he gets excited, flaps his arms, and then flies out like a two-legged projectile.

We found this particular swing on a site that sells adapted equipment for special needs kids. It’s pretty much like a plastic, high-backed recliner with a 5-point harness. It’s rated up to 100 lbs, so he’s going to get lots of use out of it.

BTW – his other gift was the “We are the Laurie Berkner Band” DVD. Since she’s in the select company of the J-Man’s Pantheon of Goddesses*, that only seemed fitting!

All in all, one really good day.

[* In case you're wondering, membership in the J-Man's Pantheon of Goddesses is currently limited to Mary, our Blessed Lady of Signing Time Rachel Coleman, Laurie Berkner, and his Pre-K teacher Mrs. Jennifer!]Similar Posts:

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OK. I imagine that a lot of you will roll your eyes at this, but this is our blog! I picked out a good-sized handful of photos from the J-Man Collection, because I wanted to give in pictures a sense of how much he has grown and how his personality has kept shining through from the very beginning.

You’re around proud parents who like showing off their kids. So buckle in! Massive Picture Alert!

1 day old!

Just recently had started smiling – 6 weeks old

Almost 4 months – the day before his first haircut (I’m a little Hobbit!)

6 months old with his then-favorite toy, Pooh

Totally cool first Easter!

Hard to see here – but he’s showing off his first teeth at about 9 months

First birthday – the shirt says it all!

Out in the Fall leaves with Daddy – 14 months

Looking like someone cloned Mommy – 20 months

Walking with Daddy; walking on his own is still almost two months away – 21 months (still one of my favorite artsy shots ever)

Coloring with chalk at his new preschool (a huge achievement for him at the time!) – just turned 2

Generally not a big Halloween fan, but still hamming it up for us – 26 months

Pure, unfiltered enjoyment of his all-time favorite sensory activity – 2 1/2 years

Little did we know – but soon would discover – that he almost certainly was reading and had been for a while (hyperlexia, yay!) – 2 1/2 years

The picture that captured the hearts of his first IEP team and the teachers to follow; working at his desk at home – almost 3 years old

Coloring and practicing fencing simultaneously – just before his 3rd birthday

His first day in the Pre-K autism class at the big elementary school, and the day we felt like our little boy had really grown up – age 3

Going through his sidewalk chalk phase, coloring in our entire back deck one nice fall day – a little over age 3

His first real snow – 5″; loved every second of it and showed that he’s impervious to cold (side note – this was the morning of Obama’s Inauguration) – age 3 1/2

Cheesing for the camera with his weighted vest on, a safety cookie in his hand, and using his picture board – about three months ago

Daddy and Jonas at the beach recently

My dad (”Pepaw”) and the kids in the recliner recently – a rare picture of the kids being together and looking content at the same time

Recently, expressing his opinion of his brother…

And where the story keeps going from here – he’s the big brother now!

We’re so proud of you, J-Man! Keep on shining!

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