He’s a walking man

The biggest news in the world of IT Boy is his progress in walking.  He’s gone from cruising, and taking steps around the furniture, to walking distances, and now getting up on his own in the middle of the room and taking off.  It’s been a joy to see, going from wondering if he would ever walk to seeing him do it to chasing after him (he’s not really that fast, nor am I that slow, but still…)  His gait is not perfect - he tends to turn his feet inward (pronate?  prorate?  something) and he looks a little bowlegged.  His PT is wondering if he might need braces around his ankles to give him some support, but we’ll cross that bridge when we come to it.  He’s up to 11 sessions of his various flavors of therapy per week.  It’s a lot, but progress is being made. 

I always said that before I had kids, when I would fantasize about what it was like to have a kid, one of my visions was always walking around holding the hand of my child.  It happened quickly with Little IT, and IT Boy certainly took his time, but it’s been every bit as rewarding.

 

Over the speed bump

IT Boy is making really good progress these days.  He’s walking, albeit only when we steady him into a standing position, but he can take a few steps by himself, which is huge.  He’s pointing up a storm, and learning to use his signs.  The only complaint I have is in the category of vocabulary.  Namely, his words for the family.  Seems that “dada” is now being supplemented by “papa”.  So, if you are keeping track at home, that makes:

Words that equal Daddy = 2

Words that equal Sister = 1

Words that equal Me = Zilch

I can be patient.  Really I can.  He’s got other words too:

Dog - said in response to anything with fur and four legs.  Bears, squirrels whatever.

Ball - whatever he wants to throw and hope that it rolls

Car - he now needs “man time” when we get home to walk around the car, feeling it and talking to the wheels.  This does not bode well for his midlife crisis.

Apple - said the other night, clear as a bell.  I did a 180 thinking it was Little IT, but it was him.

Door - we go in, we go out, you get the game

So, tomorrow is his collaboration meeting.  I expect no use of the “plateau” word, and only that he’s making great progress.  Or else. 

 

 

My point, and I do have one

Last week, we had IT Boy’s monthly collaborative meeting.  “Monthly” would be a stretch, because the first one was in February and we never got coordinated enough to repeat in March, so we made it in April.  The meeting itself was functional, but most of the news out of it was that Boy had not hit any major milestones in the two months between meetings.  PT was talking about going up a day, and so was Speech.  BTW, I’m fine on the first one, but think Speech 4 times a week is a bit much.  Just MHO.  Anyhow, it wasn’t exactly an upper, and I was grateful I was working from home the day after the meeting so I could decompress a bit and really think about milestones. 

There are several that we’ve wanted to see from him.  Walking, certainly, is a big one.  Pointing has been another.  12 months is the timetable for that, and he’s way past that.  They say it’s more of an OT issue, but there is some cognitive delay behind that as well.  More words would be nice, but boy does he say BALL loud and clear, and with force! 

The day after the meeting, I was in a store with him in a shopping cart, when I turned to put something in a cart, he was pointing at a flag in a display.  Pointing, clear as day.  And like that, out of no where, he’s been pointing at everything ever since. 

Today, he took 4 steps between me and the PT.  He did it twice.  She screamed she was so thrilled.  It wasn’t like he got up to make the steps - we did have to steady him a bit, but when he was in the groove, off he went.  When we tried to make it a 3rd time, he walked like I did during the vertigo episode, but it gave me hope.

I’m not saying that everyone is wrong, and now everything is ok with him.  Far from it, he still needs all the therapies he’s been given as he is anywhere from 5-6 months behind in most areas of development.  But I am saying that when you think it’s pitch dark around you, don’t miss a spark coming out of the darkness, and take it for what it is.  Hope.

 

But what causes it?

That’s the question we get again and again when we talk about IT Boy and his hypotonic condition.  Hypotonia is a condition, not a disease and as such, can be caused by hundreds of things, most of them too horrible to make you want to continue doing your research on Web MD.  We’re addressing his issues with many and varied therapies, and he has made progress, but not as much as anyone would like to see.  No pediatrician, therapist or specialist has implied that there is any reason to believe that he has anything more than a delay, but still, we’re left to wonder.

I subscribe to a Hypotonia message board and there is one common theme among all the parents who post there.  It boils down to “my kid has this thing, and I don’t know why.”  Some parents have a diagnosis of autism or CP or various muscular distrophies, but most don’t.  Many go through batteries of tests, ranging from simple blood tests to more invasive muscle biopsies to try and get a true diagnosis.  Some get one, some do not, and on they go. 

I had been content for a long time to go this route, but we recently made an appointment for him with a Pedatric Clinical Genetics specialist.  If there is something to this condition that can be addressed, great.  If he has something else that we can’t do anything about anyhow and have to let the therapies take their course, so be it.  At least we’ll know, and as a parent, I can’t help but ask.
 

 

Kumbaya

Last week, we had IT Boy’s first collaborative meeting.  Due to be held monthly, these meetings are intended to bring everyone on “Team Boy” together to talk about his therapies and how best to work together to achieve these goals.  It was a bit daunting, this first meeting.  We had our service coordinator from Early Intervention there, although she probably will not attend in the future.  We had some spirited discussions where we debated who should take notes (coordinator said it had to be a therapist, not a parent; therapists said it had to be a parent), and how to place the meeting in the schedule (some had heard the meeting had to be on a day with no services, others said it didn’t matter), but not many about IT Boy.  For the most part, we were all on the same page about what kind of treatment he’s getting, what the philosophies were, and how best to work with each other to move him along. 

Some things the therapists agreed on, but Mr. IT and I did not.  For instance, they all say he doesn’t respond to his name.  We have found that to not be the case.  Au contraire, when we call his name, he turns to us and gives a little grunt that sounds to our ears like “Huh?”  If I was taking notes, I would have noted that. 

Next time, I definitely will take notes.  The service coordinator said parents shouldn’t do it because they can’t participate as well and think, but as a visual learner, my recollections are aided when I have seen something I have written down.  Maybe I’ll use different colors of ink, and channel my inner Jolene…maybe…

Thankfully, we did have progress to talk about…he’s saying his first real word of meaning (more about that in the next blog entry), he can take a half step between people (but no more!) and he’s getting even more curious about his world.  Some days we expect him to just get over the delays and wake up running around and spouting Kafka, but the progress, however slow, is welcomed. 

 

Baby stepping

I’m telling everyone in earshot that IT Boy and I had the bath of a lifetime last night.  He picked up every toy in the tub and, in his own IT language, asked what each toy was.  He went in order, red soccer ball, blue soccer ball, green soccer ball, then repeating it, until Buzz Lightyear would float by and he’s go in order with him, Zurg, and the gang.  I told him, again and again, the name of each toy, and he kept it up till the water was cold and his teeth were chattering.  He also made up a game with one of the tub toy balls (with IT Boy, it’s all about the balls) where he picked it up and ran it down the baby tub until it splashed in the water.  When it did, he clapped.  It’s the first time he’s been that curious about the world around him to care enough to ask about it.  I was thrilled and would have stayed in there all night with him.  He’s getting another bath tonight.  He’ll be pruny, but we’ll have a good time

Then, this morning, when his speech therapist arrived, he made the “more” sign with his hands, just like she had been teaching him.  He kept signing as we put him in the high chair, his own way of saying, “Bring it, babe.”

I feel like we’re starting to see progress from the speech therapy and special instruction.  That’s the thing with the little moments.  When you’re gone without them for so long, they mean so much.  What a great night. 

 

State of the IT Boy

As of last night, all the “annual” progress reports from IT Boy’s various therapist have arrived.  I say “annual” because not everyone has been working with him for a full year, but his review is on the anniversary of him starting in Early Intervention, hence “annual”. 

In any case, the news is good and the news is less than good.  Good in that therapy is accomplishing some goals.  Less than good in that he still has a long way to go.  They’ve been able to identify his delay as being either 5 months (PT), 3 months (OT) or 4 months (Speech).  So, he’s delayed.  We’ve got that.  Moving on.

Both PT and OT are perfectly happy coming 2 days a week.  I’m fine with that.  PT had mentioned that depending on the delay, she might be able to get a 3rd session on the plan for him.  I was very hesitant about that, because simply put he’s wiped after PT.  Often times we find him nodding off at the end of a session, and he certainly power naps when he’s done.  Plus, fitting in more than he already has is proving to be a challenge. 

Speech wants him 3 days a week.  His low tone means that his mouth muscles are weak too (who knew?) and he’s way behind where he should be.  My concerns weren’t necessarily speech related, but more cognitive development.  For instance, he’s still not really pointing.  He’s getting the idea about how things work (a car goes wroooom on the floor, balls are for bouncing) but it’s been slow in coming. 

So I shouldn’t have been totally surprised when the speech report comes back suggesting that we add a “special instructor” to the therapy regimen to concentrate on the cognitive development.   This will take Boy up to *9* therapy sessions per week, if we do it, so as you can imagine, I’m a bit apprehensive here.  On the one hand, these have been my bigger concerns, outside of motor skills, so I’m happy to see we can get someone in to concentrate on this stuff.  But at the same time, it’s a lot for Boy to deal with.  He has therapy 2 or even 3 times a day, and it’s wearing him out.  We haven’t found time for any sort of a playgroup for him, which we know would be a good socializing experience.  He does see other kids through Little IT’s massive social circle, but how much can 8 year old girls pawing him and saying, “He’s so cute” really lead to better walking and mobility?  I’d love to do something like “Music Together” with him.  We did that with Little IT and it was so much fun for her.  The groups in MT are all ages from 0-4 years, which is great because you go from learning from the older kids to mentoring the younger ones as you progress in the program.  But when can we fit this in?  2 hours of therapy, 3 hours of naps, and eating don’t allow for a lot of free time within a day.  Weekends are dicey because of Little IT commitments, but I would happily split off from Mr. IT and have each of us do something with separate kids.  I just need a better idea of when more is better becomes more isn’t so good. 

Net net, I am pleased that he is progressing.  IT Boy is work, no doubt about it, but it’s the most rewarding job I could possibly imagine.

 

Listening to your “inner mommy”

When we first got IT Boy evaluated through EI  about a year ago, we didn’t realize what kind of an adventure we had embarked on.   As I have mentioned in previous posts, we started with PT, followed 4 months later with OT, and recently have started him working with a speech therapist.  But let’s go back a little and talk about what to do when things are not quite working the way you’ve hoped they would.

When PT started last year, we had some ok days and some downright awful ones.  He was only 4 months old, so what he was doing in the sessions shouldn’t have been exerting him that much, but since he did not have the muscular strength in his core, sometimes he was in utter and complete misery.  I wasn’t able to be around for more than 2-3 sessions per month, so after each session I would call my mom and ask how things went.  Sometimes I would hear that things went well, other times I would find out that he started crying 10 minutes into the 45 minute session and didn’t stop till the session ended.  Maybe the PT wiped his nose (he hates that) or made him do too many baby sit ups…it was bound to be something. 

Not having had a kid going through this, I began to wonder how normal all the crying was.  Let me state right off the bat that in no way did I feel he was being mishandled or abused.  He just was not happy in his sessions.  After 4 months, the PT recommended that he be evaluated by an OT (PT’s concentrate on gross motor skills, OT addresses fine motor issues).  Boy had a wicked head tilt and greatly diminished strength on his left side, and she felt he would benefit from receiving OT.  We had an OT come and do the eval, and she agreed.  We thought she was wonderful with Boy, and luckily she became our OT (she lives up the street from us, so it’s a win win for her as well). 

When he started OT, we noticed that he was working equally hard in OT, but seemed much happier.  It’s a totally different treatment but some things that bothered him in PT were done in OT with no issues.  I wondered whether it was the individual involved with his PT who wasn’t a good match for him.  When we talked, she said very sweetly that my son was just not happy with her, but that’s the way these things worked and it would get better over time.  I asked our babysitter to watch sessions with her, and she felt that maybe the PT wasn’t the right fit for him.  She wasn’t doing a lot of things with him and was spending a lot of time doing find motor things on the floor.  Shortly after that, we found out the PT was pregnant, and that was one reason she was not as mobile as she was pre-pregnancy and was doing reduced activities with him.  She felt these activities were fine and she would be able to continue in this way with him at least for a couple of more months.

I disagreed and contacted the service coordinator assigned to us by EI.  She put us in touch with a new PT who has been God’s gift to IT Boy.  Within two weeks of starting with him, he was commando crawling after not moving at all.  Within a month, he was fully creeping.  I won’t say he’s eliminated his delay, but the progress he has made with her has been steady and pronounced.  Was it because of having a new PT, or was he simply ready to make those steps?  We’ll never know, but I do know that I did not regret the move for a second. 

Now, did I feel horrible about going around the PT, especially when I learned she was pregnant?  Of course I did, I was a pregnant person myself.  Twice.  But I had to put my son’s best interests first.  Namely, when things were not working out, I had to:

* Talk to the service provider directly.  Be your child’s voice, his advocate.  It’s a role only you can take on, so don’t for a minute hesitate.  I’m not giving you permission to be a bitch, more to be informed and stay active.  Understand what the therapist is doing and why.  Have your significant other at a session with you.  Ask a trusted friend to watch sometime.  Tape your sessions, if your provider approves, so you can watch and review them later.   

* If that doesn’t work, don’t hesitate to talk to your service coordinator.  The wonderful woman who performs that job for us took the attitude of “you’re the boss, what you want I try to make happen.”  She didn’t make me feel bad for asking and praised us for taking an interest in Boy’s treatment and not being passive.  We all share the same goal, and that’s helping the little man get better.  Realize that, focus on that, and make sure all sides are working it happen.

*If you’re still not getting a situation resolved, don’t give up.  Try seeking a second opinion, either from another therapist or your pediatrician or neurologist.  Sometimes that can sway others.  Sometimes just being persistent can get your point across too.  I’ve heard of it happening, so never feel like you have to compromise if you don’t think you should. 

Back to the communicating with your provider part - remember, therapy is only as good as it is unless you take an interest in what is going on and keep up with the practices when the therapist is not there.  New PT had me crawling around on the floor and up and down stairs at our first session, because she wants to make sure parents keep up the work outside of therapy.  Frankly, she’s sweet and adorable, and is so kind to my son, but I’m a little scared of her all the same.  That works for us, because I listen to everything she says and repeat it at home all the time. 

So, today’s IT lesson is to listen to that mommy inside of you to help focus on what your child’s needs are and how they can be met.  And don’t forget that inner mommy needs a little chocolate every once in a while.  Valrhona is nice, but Ghiradelli will do. 

 

He’s a genius, I tell ya

IT Boy had his OT evaluation the other day.   Forgive me if I sound vainglorious, but he had one huge “get” during the eval.  The OT gave him a cookie, and, get this, he ate the whole cookie all by himself.  Yup, no parental assist there.  I’m not exaggerating here, this is not something he has done by himself, so this was a big deal.  And, he’s shown he’s following in the family’s cuilinary footsteps.  Now, if he could have only had some vanilla ice cream to wash the cookie down…

 

The One Thing

It’s been one year, give or take a week or so, since the Boy started his therapy regimen to battle hypotonia.  This week, he’s had evaluations with his OT and PT to review where he is and where he should be.  It’s encouraging, and it’s not.  He’s made significant gains in some areas, but you can see others where he’s far from where he should be.  He can do so many things that he couldn’t do when he started PT a year ago.  For instance, he’s a speedy crawler, so much so that his grandfather nicknamed him “Scooter”.  He’s cruising on furniture, and crawling up stairs unassisted.   But he’s not standing or walking.  Yet. 

To put everything into perspective, I sat down the other day and watched the video I took of him when he first started PT.  There he was, a floppy and pale little boy being put through things he wasn’t entirely happy with.  The PT liked to see how his muscles moved, so he was stripped down to his diaper.  I had to bite back tears, seeing now what I didn’t see then, and that was how helpless he looked when he was trying to do things.  She used to do little baby sit ups and other activities to get him conscious of his feet, to help him know where his plane of movement was.  Sometimes, he was frustrated.  Oftentimes he would cry, so much so that we had to stop the session and have the PT comfort him.  I must have compartmentalized or channeled my emotions during these sessions because they affect me much more now than they did then. 

I do recommend that parents going through this with their kids tape a session every month or so, to give a reference point on how much progress has been made.  It’s hard not to be discouraged.  I push myself to focus on the achievements, and having to put what needs to be achieved in a positive light.  Like, how can we help him get there, not bemoaning the fact that he isn’t there yet.  It’s hard, but no one said this was going to be easy.