Posts from — February 2008

If you got here by way of one of our words at The Big Word Project, all this worked! Welcome!

Both Hands and a Flashlight started as a blog where my wife and I could try to connect with other parents of special needs kids. This isn’t a requirement of anyone wanting to join the conversation. All parenting topics are fair game, though we will focus a lot on the challenges our son is facing these days. This blog may be serious, funny, biting, full of witty repartee, hopefully foul-diaper-free, certainly hopeful, and all about doing what it takes to help your child grow into whatever little person they were meant to be.

We’ve just started recently, which has amounted to us diving headfirst into explaining everything we’ve been through and everything that we’re learning. We’re just going to catch everybody up as we go.

We just started this site so we have some design issues and features to work on. Until then, stay a while, read the posts, and subscribe to our blog. More importantly, leave us a comment! Say hi, ask a question, say something witty, say something not witty, or whatever floats your battleship.

Also, read The Both Hands and a Flashlight Manifesto and the witty introductions in “The quest to find our own asses begins”. That’ll give you the gist of things.

More to come. Again, glad you made it!

Today was my last day in my old job. I’m moving to a new position within the same company, doing something I’m actually good at, and don’t hate. I stayed with my old job for YEARS because we needed the health insurance, but because of the stress of my old job, I used more health insurance than I would have otherwise. Yet another reason I’m for universal healthcare!

In my old job, I did a lot of behind-the-scenes stuff. Lots of people had no idea what I was doing, or how I spent my time… and many of those people had that whole “if I don’t know how to do it, it must be really simple” idea. Or, they assumed that if I wasn’t doing what they did, I must not be doing anything at all. That last one really makes review-time fun.

I’ve tried to spend the last 2 weeks teaching someone else how to do my old job. He’s freaking out. I’ve never seen someone need such detailed instructions before. I’ve been telling my bosses for THREE YEARS that someone else needed to learn how to do this stuff, and they kept putting it off. They knew I had this new position before I did - and still waited until the last minute.

I’ll probably be spending Monday running over and doing CPR on the guy each time he crashes and burns…

Comic relief for stressful households.This really is a receipt we got one day. Hey, it’s a recipe for a good evening!

We had our first session with the doctor doing J’s autism evaluation. While spending two hours talking about all the things your kid struggles with isn’t exactly our idea of a fun morning, we were impressed with him and the interview. What a difference it is from the evaluations we’ve had with the county!

J-Man stayed home with my dad this morning while Mary and I took the 30-minute drive to his office. We’re so rarely without him that it was like this surreal date.

Anyway, the interview was based on what’s called the ADI-R - the Autism Diagnostic Interview - Revised. A pretty readable description of it is available here. What I liked about it is that it has a standardized structure to it, but it’s not a purely formal ‘test’. It felt like a conversation the entire time, and we were able to talk about things in whatever way or order we felt comfortable with. Again, what a huge difference from previous evaluations! The ‘test booklet’ was the size of an average magazine, so it was thorough. At the end of the main interview, there was very little we hadn’t covered.

The big positive in my book was that he listened. It’s that simple. The one thing he did that I noticed immediately was how often he said, “earlier I heard you talk about…” and then would move into a follow-up question that clearly demonstrated that he was paying attention to us. I don’t think we had to repeat ourselves at all unless we wanted to. He seemed to get it all the first time. If you’ve ever had to repeat your child’s story over and over again, especially to really dense people, you know how great it feels to be heard the first time.

The doctor will review the results of this session and score it before he sees J-Man so as to ensure a completely independent evaluation from the next round. This should give us some confidence in the final results if everything matches up.

So in two weeks, we’ll have our big day. Right now, I dread it, but I have a lot more confidence after meeting with the doctor. This is so hard on J, but he’s brave, more so than us oftentimes. I just want this to get easier for him. This hasn’t been the best couple of weeks, but then out of the blue he runs up and tackles me cackling so hard he snorts. Those are the times we know it’ll be OK.

We had to be at the doctor’s by 8:00 so we had to get J up way too early. As a result, by his 12:30 speech therapy he was toast. It was not a good session, but to her credit, his speech therapist coaxed some words out of him. The new one was “Boom!” You know, after all this, every new word makes up for whatever else goes on. Yesterday was rough, but last night he said bubbles (’buh-buh!’) while playing with his bubbling bath toy in the tub and that washed the whole day’s difficulties away.

It’s the little victories, one at a time, that make all the difference.

What started out as a manageable-enough process of giving him fish oil in an oral syringe turned into full combat after the first couple of days. If I knew a martial art it might have been easier, but I doubt it.

The last couple of days have been a bit better - a relative concept. It has made giving him his other reflux meds harder as he distrusts everything we give him now. He holds a long grudge about these things. I personally don’t blame him. It’s not the most pleasant stuff in the world to take.

So far, no noticeable improvements in speech or otherwise as far as I can tell, though he has seemed more chatty in the last few days. I didn’t do an in-depth statistical analysis or anything, but I think he’s been using syllables a bit more often rather than his normal R2-D2-like moans and grunts. I haven’t seen any physical side effects so far, so that’s a big positive.

It’s supposed to take a while to notice much in the way of improvements with Omega-3s. It’s hard to be patient when you pray everyday that something will work. But it’s a lot less messy than offering animal sacrifices, so we’ll hang with it.

New word of the day - ‘two-berty’, the two-year-old equivalent of puberty marked by tantrums, stubbornness, and parental drinking. (see also Twos, Terrible)

We’ve gotten lucky so far. J-Man’s tantrums generally have been short-lived. Give him a minute and he’s fine. I think those days are coming to an abrupt end.

I dropped him off a while ago at ‘inclusive preschool’, a.k.a. Group Therapy with Paint, The Place Where Therapists Try to Get the Kids to Not Notice They are Therapists by Disguising Themselves as Teachers, and (most importantly) The First Church of ‘Yes, We Can’ Even If It Takes Us a While. He threw a fit something awful. My caffeine-to-parental-guilt ratio was a bit skewed this morning, so I think that leveled it out. Um, thanks.

Next week, the school transitions to a new building with more space and a playground. Hopefully that will help. Lots of people in a close space tend to unnerve him. Still, the transition may take us a week or two, especially since his occupational therapy and developmental therapy are changing days and we’re getting a new OT because of the new preschool schedule and the previous OT going on maternity leave. Should be a fun week next week.

Well, Daddy quiet time at the library is nearly over. Off to pick him up and see how well he did today.

We went to our friends’ little boy’s first birthday party today. Of course, it was scheduled for almost exactly when we try to the J-man down for his nap (not that he sleeps every day, but we try!). He had a good time running around their open floor plan house, although in the beginning, he felt it necessary to drag me along too.

There were probably 10 other kids there. I would say maybe 2 of them were near J-man’s age. They talked, maybe not clearly, but with actual words. They ate real food. They played with the toys provided, and even to a certain extent with the other kids.

My kid? He walked around and around, and played with the front door and the chair-rail on the wall. Other than that, one of us was holding him. I don’t believe there was any voluntary interaction on his part. Yes, if someone were in J-man’s way on his trips around the downstairs, he would push them out of the way. There was a playroom set up – J-man refused to go in there (although it WAS pretty loud). He ate – nothing. He drank – nothing.

When J-man was 22 ½ months old, he finally started to walk by himself. There wasn’t a physical reason he couldn’t do it before then; he’d been cruising since he was 1. We had to teach him how to fall safely, because it didn’t occur to him to put out his arms to block his fall, and he ended up face-planting the two times he tried letting go. Finally, one evening he just started walking. None of that “take 2 wobbly steps and sit down” stuff for him. The next day, he started running. It was like he had to make the decision to Just Do It.

Sometimes I want to say, “Just talk already! Just eat already!”

As Mary said, next Tuesday begins a three-part, private evaluation to see whether J-Man has something on the autism spectrum.

After reading endless books on the subject, he doesn’t seem to fit any of the categories for ASDs, but he does fit some of the characteristics of some of them. The DSM-IV (the Gospel According to Mental Medicine) requires kids to meet some number of criteria within a particular diagnosis in order for that diagnosis to be, um, diagnosed. As best we can tell, he doesn’t cross that threshold for any of them. I suppose if it’s any of them, PDD-NOS (a.k.a. “um, we don’t know”) is the most likely one, but who knows.

In case you’re wondering why we’re having this evaluation done - and paying for it out of our own pockets no less - even though we don’t think he is on the spectrum, the truth is that we want to either rule it out or keep it in play based on a thorough evaluation, not the drive-by evals we’ve gotten through Early Intervention (EI). We might as well shake a Magic 8-Ball for all the good those evals have done us.

Don’t get me wrong. We have plenty of good things to say about EI; this just isn’t one of them.

The evaluation will take place over three sessions over a four-week period. The first is just for the parents to be interviewed, listened to, and go over the very long, and pretty depressing, questionnaire we’re filling out. Thank God an evaluator is finally listening to what we think! The second - two weeks later - will be us and Mister Man. The third one I guess is to go over the results.

He absolutely hates evaluations. He doesn’t “test well” apparently. Of course, the Dart Throwing Diagnostic Indicator tests we’ve had so far probably account for a lot of that. If he had the fine motor planning control to flip them off, he probably would have. In the end, it felt like an episode of Dance Fever (”Your moves were sluggish and off the beat. I give it a 42.”) with about as much statistical relevance.

Anyway, this private practice comes highly recommended. We’re finding J-Man’s diagnoses by process of elimination as much as confirmation, so we hope this gives us something definitive one way or the other. In many ways, this won’t change his therapies, but it will give us something more to work with when he graduates into the school system’s programs in a few months.

We’ll keep you posted.

On Tuesday, we have our first meeting with a doctor who is going to do an autism evaluation for the J-man. I’m of 2 minds about this: I’m afraid to go forward, because I worry that he will come back with a diagnosis of autism… but I’m also looking forward to it, because one way or another, we will know something at the end. The first meeting is actually just for the parents – it’s not until March that J-man will actually meet up with the doctor for a two-hour evaluation. We haven’t had the best luck with the county evaluators at this point – one that occurred in our home had the doctor actually yelling at my son. That’s part of the reason we’re going with a private practice this time, even though that means we have to pay $1400 out-of-pocket.

I’m afraid, and I’m excited. Reminds me of worrying about labor…

Last year’s health care spending orgy will stand another year as the fastest ever to our $2,200 deductible. J-Man’s two-day hospital visit for the norovirus vomit-fest last February assured its place in history.

That said, we’re pretty close already. We’re doing Rx roulette right now to figure out the right order to submit our prescriptions to get the least out-of-pocket costs. Once we go over the deductible, $600 medications suddenly turn into $35. Woot! (pathetic as that is…)

Thank God for flexible spending accounts. We’re essentially borrowing against future contributions into it at no interest. It’s sad that we fully expect to soak our $5,000 annual contribution to it well before the end of the year.

Next week’s autism evaluation should help that out…

We’ve read and been told by a handful of people that giving kids with severe speech delays (and other developmental issues) fish oil supplements can make a world of difference. Sometimes we wonder about the wonder-drug-like claims made about Omega-3 fatty acids, but at this point we’d face a strong north gale and pee into it if we thought it would do any good.

So after doing our typical obsessive amount of online research, I went to Whole Foods and picked up some fish oil in liquid form. There is no way in hell and Georgia that J-Man is going to take pills or eat those chewy things that some egghead thought kids would actually ingest. Unless they can bake it into a tortilla chip, eating it is out.

I lucked out and found a liquid that required only 2.5ml (half a teaspoon) to get to what is generally considered a therapeutic range for toddlers. That’s less than the Reglan (reflux med) he takes, so we were hopeful we could get it in. About 5ml is his breaking point we’ve discovered.

Supposedly, the therapeutic dose for toddlers is about 500mg of combined DHA and EPA per day, though there are no definitive studies about this. God knows I’m not a doctor, so talk to your pediatrician first, preferably one that has a clue about supplements. I did learn to be careful about one thing, though. Some Omega-3 supplements contain Vitamins A and D, so be careful since above-recommended levels of those can be toxic.

The first couple of days we tried masking it in his applesauce but that was a total bust. He is super-sensitive to taste, and probably smell too. The shove-it-in-before-he-has-time-to-fight-it method looked to be our only shot.

Yesterday, I got the fish oil into an oral syringe (thank you Target for our endless supply of them) and got it in him, though not without some ju-jitsu from both of us. It’s strawberry-flavored and it doesn’t smell or taste that bad to me. Mary thinks it smells like an abandoned fish market. It does have an aftertaste, but ‘after’ is the operative word there. After it’s in him, I don’t much care. I gave him some iced tea to wash it down and he seemed OK with it (which is all relative).

It’ll take a while to see any difference, assuming we do. If it doesn’t, I guess we’re on to burnt offerings and word-saying. Let’s hope it doesn’t get to that. It’s probably against our HOA covenant.

One of the things I’ve noticed about being a mom of a special needs kid is that people think you did something to cause your kid to be that way – or that you DIDN’T do something, and that caused your kid to be that way. Either way, it’s the mom’s fault. I do my best not to listen to those types of people, because most research shows that special needs aren’t caused by something the parent has done… but occasionally, it still gets to me.

So I ask myself: is it because I work outside the home? Does he not speak because we had to have his tongue clipped at two-weeks old? Is it because I’m not a very talkative person at home myself? Did I do something wrong during pregnancy? Could I have prevented this from happening if I were a better mom?

And so it goes. There is always that negative little voice in the back of my mind saying those things. Tim says he gets the same little voice, but I truly don’t think he gets the societal pressure I feel when we’re out and about.

If you met my son, you would soon want to hug him and squeeze him and call him George. If he liked you, he might even let you do all that, although the George thing might confuse him. He is the most loving child I’ve ever seen (and we have extra-cute nieces and nephews, so we have seen them in action as well). He tries very hard to get us to understand what he can’t say, and is quite inventive in figuring out how to communicate without words or signs. He’s beautiful and funny and caring and impish and mischievous and brilliant and loving.

I just wish everything wasn’t so hard for him.

We’re working on a ‘manifesto’ so visitors and participants on the site will know the kind of community we’re trying to build here. Consider this a first draft. We’ll add more I’m sure!

Here are some rules:

• Thou shalt be respectful to every parent here.
• Thou shalt be thyself at all times. We aren’t super-parents; we’re human. Being honest will help you; holding it in won’t.
• Thou shalt laugh at thyself. It’ll make you feel better.
• Thou shalt ask questions. There are stupid questions in this world, but it’s been our experience that parents of kids with these sorts of needs don’t ask them.
• If thou doth wisheth to offer advice, doeth it constructively or shuteth thy hole.
• Thou shalt value thy children regardless of what they are going through. Thou may be having a day where thou’d rather send them off with the gypsies, and that’s fine. Thou can do that (feel like sending them off, not actually doing it, though) and still love them.
• Thou shalt celebrate thy children’s hard-earned achievements, no matter how small. However, if it involves doing the Riverdance, thou might want to closeth thy blinds.
• Thou shalt not be a horse’s ass.
• Thou shalt always be an advocate for thy children.
• Thou shalt never give up.
• Thou shalt go to Italy, regardless of what that poem says. Thou wilt have to change planes in Holland anyway, trust me.

Here’s what we believe:

• There’s nothing ‘wrong’ with our child or yours. He or she may be struggling to overcome some or many things, but our children are perfect just as they are.
• We will do what is necessary to help our child reach his or her full potential, whatever that is.
• We know more about our child than anyone else. We will not blindly accept the judgments of others, no matter how ‘expert’ they may be.
• We will, however, listen to any and all advice given to us. We reserve the right to use it, adapt it to our needs, or ignore it and make fun of it.
• We are perfectly fine with people asking us questions about our son and all the therapies we go to. There is a lot of information to share and learning from each other is how we become better parents. In the rare cases where the questioner is trying to reinforce their belief that all parents with special needs kids are weird or must be doing something wrong, I will instruct my son to go take a whiz on your front door.
• We will work to be OK with not being perfect. We will work to be OK with not being OK with not being perfect. And so on.
• People who ignore our experience and understanding of our child, treat us like idiots, and think they know more than we do about him just because they have a long string of initials after their name can go to hell.
• You have our permission to say “bite me” or be sarcastic to anyone who makes an idiotic comment to you in public. Example: “No, I never thought about talking to my child more. We decided before we had children that we were all going to become mimes.”
• Never use a big word when profanity will do.
• Anyone who judges our children, says anything derogatory about them, or makes fun of them will get their ass kicked and their name taken. Once time travel is invented, we will go back in time and smack their parents, too.
• Parents who can affirm each other with all their flaws and foibles and be supportive and understanding in the midst of all the emotions that come with this are the best people we know. We love you!

To borrow the famous philosophers’ words, “Be excellent to each other. And, party on, dudes!”

To put it simply, this is primarily a blog for parents - particularly of ’special needs’ kids - who feel either stupid, occasionally or perpetually inept at parenting, or, most likely, both. This doesn’t mean you really are stupid or inept, but if you’ve ever been so mental that you’ve made it to the mailbox in your underwear before realizing it, you definitely will start to question everything. If you didn’t realize your ‘garment deficiency’ until your neighbor asked you about it the next day, you’ll really feel at home here.

We’re the proud parents of our 2 1/2-year-old son, who is the bright star at the center of our universe. He has an exuberance that can brighten any room. He also has a great many struggles, but he faces them bravely and with a determination that inspires us. He goes to various therapies during the week, all of which we’ll cover in future entries.

Some of his issues have a fairly clear diagnosis; others do not. The most obvious one is Sensory Integration Disorder. You’ll also see this referred to as Sensory Processing Disorder, Sensory Integration Dysfunction, and a few other things. The idea is essentially the same.

There is a growing sense that he also has apraxia of speech. He uses very few words and the challenge has been to understand why. He also has some issues with coordinating fine motor movements, which is most likely related to his sensory problems. As a result, he can’t really sign either.

He’s also very delayed in his eating skills. He was in feeding therapy for a long time and still is to a lesser degree. He only eats a few foods. It became clear that he’s not ‘picky’ but instead has sensory reactions to many types of food. It’s complicated, but we’ll get more into it later.

The good news is that he seems to understand us quite well and follows instructions as well as most two-year-olds. He’s a social kid and gets along well with most anyone. Thankfully, he has very few tantrums, and when he does they are very short.

The complicating problem is that he also has some other indeterminate developmental delays. Autism has been bandied about, but none of his therapists currently think that’s likely because of his social skills and general ability to tolerate situations and activities that kids with Asperger’s or autism usually cannot.

So, we’re on a quest to help our son decipher the world and grow into his full potential. We know other parents are going through this too, often without support or understanding of what to do. Our hope is to connect with parents who are struggling to understand what is going on and share whatever insights we have with each other.

I guess you could say that this is our way of talking through things in hopes of discovering the answers to our countless parenting questions. If we can find common insight and community with other parents and help each other figure things out, then we’ll have accomplished something here.

You don’t need to have a child working through anything we’ve mentioned above. If your child is having a hard time and you feel clueless or frustrated, you’re in the right place. We know that a lot of parents of special needs kids feel isolated, stupid, and frustrated. Be welcome here! You’re in good company.

This will be a tag team blog. My wife will share her wise and sage-like thoughts, and I’ll do whatever it is I do. We’ll try to keep it light-hearted and fun, but we aren’t bouncy, chipper types so who knows what else will come out of our fingers.

So, here we go!

Oh - in case you’re wondering, it comes from the saying, “He can’t find his own ass with both hands and a flashlight.”