Recently, I was hearing a report from Boy’s physical therapist that made me chuckle.  She had tested him on some Peabody score markers, and wasn’t happy with his results.

• Instead of kicking a ball, he throws it with both hands over his head.
• He doesn’t throw overhand, only underhand.
• He catches balls with both hands and clutches them to his chest.

I don’t think there’s anything wrong with him.  Have you seen his sister?

He’s just trying to be a keeper, like his sister.  Nothing wrong with that in my book!

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.

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. 

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. 

As we proceed into a world of 3 therapists giving IT Boy a total of 6 sessions a week, I’ve decided that the purpose of therapy is to teach him the things we will later scream at him for doing.  For instance…

1. Socks – one of the first things his OT taught him was to take off his socks.  Good use of the pincher grip, and builds strength as it takes you off balance.  Yea, cheer, good boy when he does it in a therapy session.  “Nooooo!” when he does it as we’re rushing to get him dressed in the morning.

2. Up the stairs – PT feels that going up the stairs is great to build upper and lower body strength.  So we do it in session.  When Boy gets to the middle landing on our steps, he turns, sits and grins his widest and proudest grin, waiting for the wave of applause to wash over him.  At least in a session.  When he does that while I’m in the kitchen and the rest of the family members are not paying attention, it’s not exactly an “attaboy” moment.

3. Cruising – IT Boy is now strong enough to pull himself up and grab for things.  Unfortunately, his favorite target is the TV console which is loaded up with remotes.  Remotes are a great motivator in therapy, but out of therapy they make Mr. IT rashy when they’re not in his control.  Bad enough Little IT or I have them, but the drooly, slobbery Boy?  No go.

I could go on but you get the picture.  It’s making me wonder what other kinds of therapy he’s going to need later on if we keep messing with his head like this.