Posts from — July 2008

If motherhood imparts traces of omnipotence, even the rhetoric of special needs motherhood raises the bar. Often we are called “superhuman” or “saints.” The “I don’t know how you do it” that special needs mamas hear implies that we must have some other-worldly qualities to help us make it through the day. The notion that we doubt ourselves, keenly feel our limitations, or labor over our decisions simply doesn’t line up with the power necessary to meet the challenge of our daily tasks. – Vicki Forman

This mama says exactly what I would say if I could write like that. I am not a saint. I am not a superhero. Sometimes I’m not even a very good mama. I get tired of sensory issues and say things like “Just eat” or “Just climb the damn stairs.” I get jealous that my friend’s little boy, who is a year younger than the J-man, is speaking AND eating table food. I get scared about what is next, and so I procrastinate instead of learning something new, because then I have a reason for failure, instead of being a failure. I read random books as a form of escapism.

However, I do have superpowers! I can call upon the power of the boob at a moment’s notice, and my super-sensitive-nose has saved us from taking the J-man somewhere moments after he’s pooped. I can sing many songs in many keys, and have learned to vary the pace so he can sing along. Mostly though, I can love him.

That’s my best superpower.

For reasons none of us really understand, J-Man has been totally freaking out about stairs of late. He used to go up and down with little help and no worries. He’d hold on to the rail with both hands or with one hand on the rail and the other on us, but he’d do it without any real issues. We have fairly steep steps to the upstairs of our house, and he climbed them without much problem beyond being a little wobbly about it.

Then out of the blue about a week ago, he started melting down whenever we wanted him to go up or down stairs. The two steps to our garage remained doable even if not a calm experience, but anything from the four or five stairs at preschool to the dozen steps to our upstairs might as well have been Everest or jumping out of an airplane. We still can’t figure out why.

At first we wondered if it was just a cranky, almost three-year-old, stubbornness thing, but his behavior is more of terror than just being a toddler. We constantly have to read the behavioral tea leaves because he’s not really verbal. I think we’re right in saying that something is way off inside him.

We talked at length to his occupational therapist about whether something sensorially was short circuiting in him. He has been very sensory-seeking lately, which is usually a sign something is up. He’s been burrowing under pillows, us, or anything else that he can wedge himself in. He’s been rubbing his head on the carpet and doing his downward-facing dog yoga thing he came up with on his own. (He’s insanely flexible.) He’s also way more into his brushing (best picture I could find) than he’s ever been.

We think he also could be having sinus problems that are throwing off his sense of balance (vestibular), which has always been a struggle for him. I don’t know.

This has been a really depressing setback for us. It’s the age-old struggle of when do you ‘give in’ and when do you stick it out regardless of how long it takes. There will be setbacks, but there’s also a sense that ‘lost’ skills take forever to reclaim. With an autistic toddler, ‘giving in’ is a very complex concept. In the midst of a massive meltdown, persistence isn’t necessarily a virtue. Taking a hard line and getting results assumes a level of understanding in your child that isn’t always there in the middle of one of these meltdowns, or in some cases isn’t there in general.

Last night we tried the ‘you’re going to do go down these steps regardless, but we’ll try to make it less stressful’ method. We had once before managed to entice him to take a few steps by using a couple of his favorite wooden blocks as a carrot. That didn’t work last night, but I read him his favorite book while he was on the steps and he slowly worked his way toward me. It took like 10 minutes to cover 12 steps, but it’s better than it has been. I’m not above trying to use carrots and distractions if it means he still accomplishes the goal. A win is a win.

We don’t always know why they do what they do, so you just keep trying the best you can. It’s like playing 20 Questions (or 100 Questions) many days, but you just keep at it. I tried shouting “I think I can!” at him on the steps. I guess that’s worth saying to myself as well.

I came across what may be the best web tool to come out in a long time.

A handful of Internet saints invented StupidFilter, open-source filter software that you’ll be able to use in blogs, community sites, or wherever to filter out stupidity in things like comments. I’m serious.

So as a test, I went to their demo and plugged in Michael Savage’s profane statement, “It’s a brat who hasn’t been told to cut the act out. That’s what autism is.”

StupidFilter’s analysis?

“Text is likely to be stupid.”

Well, I think that settles it.

Now go read my other post and contact his sponsors. Thanks!

Sometimes the best way to deal with a bully is to ignore them. This is not one of those times. Clearly the need for autism awareness is as important as ever.

While I have a tendency toward hyperbole, I doubt I’m overstating things when I express my opinion that the properly-named, rant-show host Michael Savage is an idiot of epic proportions. (If you need to catch up on how Michael Savage has added autism to his long list of prejudices, you can go to here, here, and here.)

It seems to be his goal to constantly up the ante in nutjob-dom, I guess when people’s attention to his on-air tantrums wanes - that or whenever Ann Coulter gets too popular and his book sales go down. Perhaps he’s trying to establish a new international standard for a unit of measurement for base prickery. I don’t know, nor do I care.

I see no need to elaborate on why this guy is a complete dillweed. If that’s not abundantly clear to someone at this point, that person is too far gone for me to say anything to help that.

What I do want to do here is invite you to contact his sponsors and share your opinions about this. If you are a customer of any of them, be sure to note this in your e-mail or letter. Better yet, send them a picture of your child if you’re comfortable with that. Let them see the faces of autism and how wonderful they are.

The Autistic Self Advocacy Network (ASAN) has a list up of his sponsors. Also, if you scroll down a ways in this blog post, you’ll see another list someone compiled based on what aired during a particular episode.

These lists differ a lot, so keep an eye on that. Because campaigns like this tend to be fluid, try to verify the sponsorship status of the company you are contacting before you hit Send. ASAN may be one of your best bets for keeping up with this.

I’ve worked enough in marketing issues to know that sometimes companies’ ads air during a show because they bought a bulk lot of ad space with a media outlet, which could cover a lot of networks and a range of possible time slots, and they aren’t always aware that it aired during a particular show. Not to mention, marketing departments within larger companies may be the ones making the buys for particular slots and markets and the higher-ups don’t always know it.

Consider this a teachable moment for them. Saying that 1) you’ve become aware that they’re advertising on Savage’s show, 2) as a customer, you are very concerned, and 3) you want to give them the opportunity to renounce this and pull their advertising, gives them the benefit of the doubt, assuming they still merit it. These tend to work better than going straight to flaming, at least in my experience. If they don’t pull out and you pull your business from them, give them concrete evidence of it (like proof of how much you used to spend there).

Also, some sponsors have pulled out already, so be sure to thank them. It’s good to switch to thank you notes as soon as they do the right thing.

Media Matters also has a way to contact stations that carry his show. The network carrying his show - Talk Radio Network - has been given ample opportunity to do the right thing, and they have not. They think by offering token slots for PSAs they can sweep this whole thing under the rug. He did nothing to ‘clarify’ his comments except equivocate, go through the motions, and then go back to being the same jerk about it. Tell them what you think about that (info@talkradionetwork.com).

To Michael Savage, I have a few comments:

1. I do congratulate you on one thing. You’ve managed to unify every facet of all the communities affected by and doing work related to autism, which is nigh on impossible these days.

2. Just because your father called you a fool and a variety of other names, don’t project your issues on to the rest of us. If you have parent issues, get help or just keep them to yourself. Certainly don’t blame us for it. You talk so much about personal responsibility; go practice what you screech.

3. Go sit in timeout, like for forever.

4. If you want to call my autistic son a ‘brat’, I dare you to come to my house and say it to my face. I’ll leave the light on for you.

I am sitting on a conference bridge now, trying to figure out what one of the presenters is saying. He speaks so incredibly fast that I don’t understand him a LOT. I know this is my problem, because he has a really strong accent, but he obviously speaks English a heck of a lot better than I speak, well, any other language besides English. I could swear he just said something about “managery Russians” and I don’t know where that could come into our topic.

Tim says I do this all the time, even to him. I will miss-hear something, and look at him and say, “Did you just say ‘managery Russians’? Because I don’t know what that means…”

Then he laughs at me.

This happens when he writes notes to me as well. Infamous story in our early marriage: Tim added something to the shopping list, and like most of his handwriting, it was a scribble. We had been spending a LOT of time working on our old house, and I just figured he wanted to use the “cheap clothes pins” to hold up something, or keep it in place while it dried, or whatever. So, I shrugged and bought a bag of cheap clothes pins.

I get home, and he asks me why I bought a bag of clothes pins.

“They were on the list! See, right here.”

Yeah, that would have been “cheap cloth napkins.”

I’ve never lived it down. Any time I either miss-hear him, or I can’t read what he writes, he says “cheap clothes pins.” If one of us is feeling particularly grumpy that we have to go to the store, the other will covertly add “cheap clothes pins” to the list.

We still have the bag of cheap clothes pins. We’ve used a couple.

I think they’ve saved our marriage. You have to be able to laugh, especially when you deal with county people, and paperwork that you swear you’ve filled out before, or strange family, or whatever. You have to know the code words to get yourself and your partner to laugh.

Cheap clothes pins. Get yourself a bag.

I’m one of the first people to encourage other parents to chuck the milestones books out the window. The ones that tell you what your child should be doing at 75.34 weeks to me do little except make you increase your antacid budget every month. The obvious exception to this is that if you suspect that your child is very delayed in one or more areas, go figure that out both through reading and with your pediatrician and other professionals. There’s a big difference between being 1.8 weeks behind and 18 months behind.

This is probably a blinding flash of the obvious for parents of kids with delays, but after a few months in Early Intervention and therapies and whatnot, you completely lose touch with what ‘developmentally normal’ is. It really is a time warp. At this point, I would have a hard time telling you how far behind our son is. We’re doing things on J-Man Daylight Time and ignoring how most of the rest of the planet tells time. He’ll do it when he does it, has become our motto (at least on our good days).

With J-Man showing some exceptional skills in some areas in the midst of being very delayed on most everything else, we’ve felt the need to go back and figure out what ‘normal’ is for an almost-three-year-old. At a parenting level, I’m not sure how much I’m concerned about this at this point. Like I said, he’ll get there when he gets there, at least I keep telling myself that. However, for purposes of getting him into preschool and doing his IEP, we need to get some handle on where he is (that Present Levels of Performance thing - with the wonderful acronym PLOP).

It’s hard to find to milestones charts that translate well into autism-ese. The obvious problem is that your autistic toddler could easily be two or more years plus or minus what is developmentally ‘normal’ for a three-year-old on these charts. He or she will likely be scattered all over the chart. You have to transpose quite a bit with them, but after thinking through it a bit, I still could get a rough idea.

At the bottom of this post are some links I found to help us get started. Hopefully they’re useful to you as well. I can’t vouch for their complete accuracy or anything, but they’re consistent enough with each other for what I was looking for.

I did discover that J-Man’s letter identification is probably on par with a level of 4-5 years old (he’ll be 3 in a couple of months if you just got here), just minus the ability to say some of them. If he’s in a relaxed state, he can point to any letter you ask for. Lowercase still confuses him for a good half of the letters, but that’s understandable. He’s getting there with numbers and has consistently identified five colors (again, when he’s in a relaxed state). With colors, I usually give him three to choose from (solid-color, construction paper squares) and ask him to point to ‘red’ or whatever. If he goes 10/10, he’ll get the proverbial gold star and we’ll start trying to identify colors in other contexts.

[Worth nothing that if you say something like "point to the green frog" he just stares at the floor. Combining a color and an object - 'green frog' - is too much to sort through as he has to figure out what's green and what's a frog at the same time. So, we just do "point to green" at this point.]

The key is the ‘relaxed state’. If he’s calm, he can do this stuff one to two years beyond age level. Otherwise, it’s a lost cause. Hitting that sweet spot is hard, which is as much the battle as anything. This is totally a sensory processing issue, which we’re working on constantly.

OK, enough of my rambling on. Here are the links I stumbled on. These center on speech, language, and literacy milestones. If you know of others, let us know.

http://www.capitolent.net/speech-milestones.htm

http://www.horizonspeechcenter.com/milestones.html

http://www.madison.k12.wi.us/tnl/lilm/early_literacy/preschool/milestones3-5.html

http://www.childcarelounge.com/articles/xlearningleteracy.htm

The J-man and I were at my parents’ house this weekend. You may not have heard my sigh of relief when I parked the car in the garage on Sunday evening. I’m sure it only echoed through three or four states.

Besides the lack of sleep for both the J-man and me, there were the “gentle” reminders that people like Jenny McCarthy get a lot of press. Had I heard of her? Didn’t I think it was great that she was telling the world about the cure for autism? How sad was I that we had the J-man vaccinated, and that was what caused his autism? Did I feel guilty? Why weren’t we trying to cure the J-man’s autism? Heck, all it takes is some supplements. Don’t we care enough to spend that kind of money on a sure thing?

Yeah, that part was fun.

Other than that, it was a pretty good time. The J-man charmed everyone, including all the new people we met. (Yes, my family is so big that there are reasonably close relatives that I haven’t met before.) For people who are Southern Baptist, there was a goodly amount of alcohol consumption going on. Funny thing is, I’m not religious, and I’m the one who doesn’t drink.

There was a LOT of really good food, which I didn’t have to cook, which makes it even better. There were some really lovely people I hadn’t seen in a long time, and I met some other really lovely people for the first time. They were all impressed with my hometown, because “everybody knows everybody else.”

EXACTLY. One of the many reasons I left.

Here’s what happens when an I-like-my-personal-space-and-my-normal-routine kid is doted upon by a thousand of our kin at a family reunion all weekend. (Note: I didn’t make the four-hour trip, particularly because I don’t think there was anywhere for me to sleep after the family invasion of her hometown. At least that sounded like a good reason to me.)

Hi! I’m so overstimulated that I’ve gone into a spontaneous coma. Nice to meet you!

He jumped on my shoulder when he got home, and then proceeded to fall completely asleep on me. Of course, when we had to wake him up about 30 minutes later to feed him dinner and put him to bed, he wouldn’t go back to sleep and is STILL awake. Normal sleep patterns? I got your normal sleep patterns right here…

I’m contemplating a variety of improvements to our blog, though given that we’re parents first and everything else second, time is always scarce. So I’m seeking input from you all on what you’d like to see more of, what you think would make the site more enjoyable and easier to use, and whatever else you can think of.

The good news is that we have a good chance at 2,000 pageviews for the month. Considering that just coming to the site and reading the many articles on the insanely long front page counts as only 1 pageview, this ain’t bad. Given that we’ve only been at this four months and haven’t done squat to publicize the site, I feel good about how that’s going. Word-of-mouth and Google have been good to us. Thanks!

We have some brilliant, regular commenters and some great people who haven’t commented but have e-mailed us directly. We’ve met some fantastic people, and I hope we’ve provided some useful information to our readers in return. We’ve definitely discovered some helpful resources from you all. We’ve even had a guest poster. How cool is that!

All that is to say, we’re growing, and with a growing readership comes a sense that we need to - you know - actually find out what our readers want. Please leave your suggestions as comments here or you can e-mail us at info [(at)] bothandsandaflashlight $dot% com. (pseudo-spam-inhibiting format - obviously format it as a real address)

Here’s what I know I’m going to do as soon as I have some time.

• Create a comprehensive list of helpful links, categorized in some way. (autism, speech, sensory issues, technology, etc.) The blogroll will become the place for kindred blogs and sites, so if you have a site related to the kinds of things we discuss here and you want to exchange links, just e-mail and ask.
• Create a suggested reading list that will cover the helpful resources we’ve discovered, and we read a LOT so this should be a useful list.
• Put together an actual description, with photos, of the home classroom we put together and the rationale behind the design.
• I plan to remove the categories list (on the right) in favor of the tag cloud, which is way more comprehensive in scope. I could be talked out of this though if people use the categories.

Here’s what I’m debating about. This is where you come in. We’d love your input on these.

• Straightforward vote - Are posts too long, about right, or too short?
• Changing the front page (and the archive pages) to where what you see are article summaries (first three paragraphs or so) with a link to the full article. This hopefully will make the site easier to scan, especially since the articles are typically long. If people like reading everything straight through without clicking off to read a full article, I may not do this.
• Making it easier to find specific topics. There are a zillion ways to do this. The “Most Popular Posts” area has been a hit. The problem is that it’s self-fulling - the posts listed there will get visited more often, so they stay on the list forever. I have some ideas, but would love any comments you have, especially if you run your own blog.
• Finding more guest posters. Gigi’s IEP post came out very well in my opinion, and a good number of people read it. Since our revenue (ha!) is less than zero, the only reward you would get for an article is the warm, fuzzy feeling of bettering humanity or something (well, you could pimp your own site too). If you’re interested in writing something, please let us know.
• Blogging more about what’s going on in the autism world outside of the four walls of our house. We talk about ourselves a lot and little about what’s happening in the rest of the autisti-verse, which we do keep up on quite religiously. I think we can walk and chew gum at the same time so we’ll try to do both.

Also, are there topics you’d like to see us do more of? It’s been very interesting reading through the search terms people use to get here. (Don’t worry. We don’t - and can’t - get any personal information about you at all.) That’s given us ideas for what people are looking for.

However, there are topics we won’t discuss any time soon, if ever. Vaccines and ‘cures’ are two of them, and we will only venture into causes with extreme care. These discussions are covered at great length elsewhere and frankly are outside the scope of our plans for this site. We’ll discuss treatments we use, but take it as a given that we’ll talk about what does and doesn’t work for us and only us. You have to research and figure out what works best for you and your child.

OK, that was a lot of meta stuff, but the point is that we really want to provide a resource that’s helpful for people and fun for us to do. If you have suggestions on how we can do that better, let us know. Thanks!

“Green is the prime color of the world, and that from which its loveliness arises.” — Pedro Calderon de la Barca

Sorry to be light on posting the last few days. We’ve all been feeling under it this week. I’m also working on a few improvements to the blog, which I’ll hopefully get done this weekend along with some posting.

In the meantime, here’s another achievement to celebrate! Even though J-Man has felt bad all week, had all sorts of weird sleep patterns, and has decided that this would be a nice time to assume the role of terrible-almost-threes-tantrum-monster, we did have a big positive. He decided to color!!

To make a long back story short, he has never enjoyed using crayons because of his sensory issues and fine motor control problems. It seems like he can’t figure out how to use the crayon, it somehow feels icky in his hand, or both. He tends to hold slender objects (like spoons, crayons, pens, etc.) at the very end with as little finger skin as he can get away with. (see first picture below) This obviously makes it very hard for him to self-feed from a spoon.

I had him ’sign’ a birthday card for my sister the other day with a crayon. Usually if we get a couple of dots and a random line, we’re happy. Even that takes a lot of effort usually. This time, he kept running the crayon back and forth and I had to take it from him so she could still read the card.

Night before last, he took one of his bathtub crayons (easy clean-up!) - very specifically the green one - and colored the edge of the tub for a good ten minutes. He has NEVER done this. He even held it some of the time in a ‘normal’ writing grasp (see second picture). Woo hoo!

After a couple of years of occupational therapy, we have coloring! On the one hand, I guess that could be depressing. But every victory is hard fought, and you gladly take every one of them regardless of cost. As you can tell in the last picture, he’s so proud of himself. That makes EVERYTHING worth it.

[Many good things have been happening at Chez Flashlight in the last 24 hours. Mary decided to make S'mores last night, and we have a guest poster! The expert commenter known as Gigi and her daughter Stephanie are about to wow you with some brilliant, valuable advice about Individualized Education Programs (IEPs).

Gigi is a retired special needs teacher and guidance counselor of 31 years. Stephanie is a speech language pathologist (SLP). So you know you're getting top-notch information here. We're honored to have you two post this. Thank you!! - Tim]

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If someone has not yet given you a copy of your rights through IDEA (Individuals with Disabilities Education Act), ask for a copy, which they are required to give you. This is your bible and you should never attend an IEP meeting without it. Here is a link to download the most recent (2007) pdf format Resource Guide for Parents. Other IDEA highlights are noted throughout.

Although IDEA is federal, every state is required to have a Protection and Advocacy system. Check for yours at the national website at www.napas.org.

You have a right to see all the assessment results and meet with the assessor(s) BEFORE the first IEP meeting so you have time to absorb it and get questions ready.

Educators are famous for turning everything into acronyms (see IDEA above and many others below) and use them as if everyone knows what they all mean. If you don’t, ASK!! Every 5-8 years or so, all the “label names” are changed to more politically correct ones, so just as soon as you learn them, they’ll all change. Personally, I think they do this just to screw with us.

Follow your gut. If something sounds fishy or not quite right, it probably isn’t. Ask questions, make requests in writing to keep the IEP team accountable, and don’t take no for an answer the first time. You might even tape record the meeting to keep everyone on their toes. Some IEP teams will be pretty ticked off by this and there may be much eye-rolling. Smile and insist. Remember – they may be the education experts, but YOU are an expert on your kid!

If you request a particular service and are told it is not possible or that your child does not qualify for it, stand firm. Request the assessment for that supports the need for the service you request. If the results don’t jive with what you think your kid needs, you have the right to request an IEE (Independent Education Evaluation) provided at PUBLIC EXPENSE. Again, make that request in writing.

The primary goal of the IEP meeting is to place your kid in the Least Restrictive Environment (LRE). This is especially important if full or partial inclusion in a regular classroom is likely and/or desired. Optimally, full inclusion with modifications should be the initial goal, working back to more restrictive options as needed. MEASURABLE goals and objectives should be written BEFORE placement is determined. In fact, it should shape how placement is determined. Modifications can range from providing an aide to providing visual cues, speech therapy, etc.

As I read through this list, it struck me that most of these tips either hint or scream at an adversarial relationship with the school district. Let me hasten to point out that most school districts really do the right thing, really have your kid’s best interest at heart and are really there to help you. They have been through this process many, many times before, to the point where it sometimes seems rote or rubber stamped. You may only need to gently remind them that although this is their 1,648th IEP, it’s your first. Knowing your rights is your responsibility to your kid, nonetheless.

(This is Stephanie talking now-Gigi’s daughter, the SLP).

The only things I have to add is regarding the specific goals/objectives, etc. More than likely they will be written before the meeting. If you don’t agree, want to add more, etc, it may seem time consuming and you may need to meet again, but it is possible.

Also, you mentioned that you were concerned about how to make the skills that J-man is showing (i.e. naming letters, colors, etc) into functional goals for the IEP and how to generalize them to naming other items. I may be totally off on this, but I do believe this is fairly common with kids with autism. I think it has to do with the fact that letters, colors, numbers are considered “rote” naming or rote memory and that naming other objects is more of “labeling”. I can’t remember the reason behind it, but the teachers will probably be familiar with this type of learning and memory and will help to incorporate that into his goals. AND those skills are very functional for a pre-school classroom, so it should all go hand in hand.

About AAC devices (augmentative and assistive communication), I know that the IEP process is different in each state, however I do believe that every IEP has a section that asks about assistive communication evals, or have all appropriate evals be completed (may not specifically say AAC). You can have that sections checked and then they are required to do an AAC eval (separate from the typical speech eval, etc.

As far as the actual eval and devices, I would recommend that several devices be tried out with J-man before anything is chosen. There is a TON of different types, software, vocabulary that should be looked at to figure out which one would best suit him. I know that some companies will even rent them out to see if they work for a specific child. I know that this is a long process and you may get frustrated, but keep with it if it’s what you feel is best for him. PLEASE feel free to ask me any other questions!!

I stumbled across an online store that sells printer toner and ink and then donates 5% of every sale to organizations that support research and issues related to autism. It goes by the straightforward name Toner for Autism.

There’s been some confusion in the autistiblogosphere (I made that up) about where their money goes, but by the accounts I’ve read, this store seems legit and the prices are certainly competitive. Given the personal stake one of the founders has in this since his daughter is autistic, there’s great promise here, and I appreciate their goal of raising at least $1 million.

With most anything like this, people are right to wonder what charities they might be supporting with their shopping. Their site didn’t seem particularly forthcoming with that information. So I thought I’d put this out there and see if anyone else knew.

I’ve taken a couple of days off (off by my standards at least) from the computer for mental health reasons. Once I get caught up, I’ll contact them and see. In the meantime, if anyone knows more about them or has bought from them, I’d love to hear your experience. I’d like to be able to recommend them, but always want to make sure and vet these things first.

Also, if you know of other businesses who donate percentages of sales to autism charities, we’d love to hear about them.

Pepaw (Tim’s dad) came over today to play with the J-man… oh, and to help Tim clean out the gutters. By help I mean, Pepaw held the ladder. Thank goodness!

For some reason, the J-man picks the days that Pepaw is here to learn a new and exciting skill. Today, it was how to spell his name. Yes, it’s difficult for him to say some of the letters, but Pepaw spelled it out with flash cards, and had the J-man read them over and over. Then, Pepaw would ask how to spell J-man. Little Man would say “guh-guh”-”mah-mah”-”aah-aah”-”eh-eh.” That’s right, he would spell out his name. Yes, of course he spelled out his own name and not “J-man.” Why do you ask?

Brilliant child. Of course he is.

Right now he is NOT napping, which I’m not going to fight, since last night he went to sleep at 11:15 (after napping for 2 1/2 hours yesterday). That meant I went to sleep after midnight. He seems to feel better today - yesterday was spent moaning pretty consistently through the day. Poor monkey. Hoping the peaches and prunes Tim picked up will help Little Man’s tummy feel better SOON!

And now, I have the Jello song stuck in my head. Dang it!

In one of those make-my-day moments, during speech therapy J-Man actually fed a bear with an empty spoon after ‘dipping’ the spoon in an empty bowl. So nothing in the bowl or on the spoon, and - shocking newsflash - stuffed bears don’t eat! It’s an abstract, non-literal event! And this is a kid with all manner of feeding issues who is distrustful of most all things culinary. But with some encouragement and direction, he figured out he could pretend to feed the bear without there needing to be literal feeding going on, and he thought it was fun!

If there was one part of the autism evaluation that he basically scored close to zero on, it was pretend play.

He’s never done this before. So….

We now interrupt this news flash for a freak out.

OMG OMG OMG OMG OMG OMG!!!

W00t! Huzzah! Yay!

We now return you to our regular programming.

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Today’s new conversation:

“Who’s the man?”

“I-I muh-muh!” (I’m the man!)

The little bits of grace that sneak up on you. The little cures for what ails ya.

Some days, the best you can aim for is to make it to bedtime and hope that nobody pees on the carpet, and even that is negotiable. I’ve been so dead tired lately that even typing this is a real effort. I’ve got all the classic signs of being way over-stressed. And I think I just stared blankly at the screen for five minutes before writing this sentence.

Some have encouraged me to write down a few good things J-Man has accomplished even in the midst of the really bad days. Since I wouldn’t call him having digestive issues and whining constantly for the last several days worth celebrating, I had to try a bit harder. I just feel like wallowing in self-pity, and the sage advice I received once that “when life gives you lemons, remember to lead your targets and follow through with your throws” seems a lot more appropriate. Regardless of your strategy, whatever works is good enough.

In OT today, I watched him actually ride a plastic rocking horse for the first time. He pushed back and forth a few times and leaned along with it some to build up a little momentum, too. For him to coordinate all of the motor functions needed to rock that thing on the floor by himself was quite an achievement. He even sat on one of those pushable riding toys and pushed it around in reverse using his feet. He hates those things, so again, this was a real achievement. It was only a few minutes of the day (though he did well in OT overall today too) but it has gotten me through most of it.

It’s not really despair or hopelessness by any stretch. I think it’s just sheer exhaustion with the gravity of knowing that we have a couple of very busy, very stressful months to go before it lets up much at all. I look at all the to-do lists for preparing for his IEP, all the people we need to contact, all the stuff we need to write up, all the day-to-day stuff we need to do, all the projects on my work lists, all the stuff that needs fixing or cleaning around the house, the weed-infested yard in front of our house, some green junk growing on our deck, all the lint stuck in the dryer exhaust which vents out from the roof, and God knows what else, and in the moment it all feels like too much. I notice a loose toilet paper roll holder and feel like sobbing. That’s just how it’s been.

It’s like getting to mile 17 of a marathon and realizing you just hit the wall, except you can’t just turn right, get in the car, and go home. Deciding not to run isn’t an option. In our area of the world, people often call it being ‘bone-tired’. That sounds about right.

If you go looking for it, some nugget of something will pop up and hopefully nudge you a while longer. I forget who it was, but someone once said something to the effect of, “We can only see in the dark with our headlights a few feet in front of us, but we can make the whole trip that way.” From some recess of my brain, that came up and bumped me along a little bit. I guess getting through the day is sometimes just about driving a couple of feet at a time.

Not long after, I read this quote in a book about typography of all things (it was an example in the book - no idea who said it): “Today’s mighty oak is just yesterday’s nut that held its ground.”

I guess sometimes feeling like a nut isn’t so bad. Good thing. I’d still prefer some other way.