Note to Mama

It was truly a red-letter-day!

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. 

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. 

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.

IT Boy has started speech therapy.  Two months ago, his occupational therapist (OT) recommended that he be evaluated for speech delays.  Some of our shared concerns were feeding delays due to his hypotonia/low tone and his not pointing.  During his subsequent speech evaluation, I could clearly see that he had many more delays than just those, and not surprisingly, he was approved for therapy 2 days a week. 

Today was his second session.  His therapist uses the Hanen Program called It Takes Two To Talk. I don’t know too much about it yet, but it seems to mesh with how I want to communicate with the boy.  One evaluator we saw early on in the process discouraged me from anticipating his needs.  For instance, when he wants his bottle, I can tell because he goes “mmmmm” and flaps his hands.  The evaluator suggested that I wait as long as I can before I give him his bottle to encourage him to either point or “sign” a request for the bottle.  That seemed plain annoying to me.  I know he wants the bottle, I’m going to give him the friggin’ bottle.  R., his current speech therapist, said that when you show him the bottle, engage him in a conversation, however one sided it might be.  “Hey IT Boy, here’s your bottle…do you want your bottle?  Do you want to drink from your bottle?” and then give him the bottle.  Her techniques seem more flexible, and more in line with how I want to respond to the boy.  I’ll write more when I understand the method more (how ’bout Hanen For Dummies, anyone?) but for now, I’m happy. 

It’s so crucial to have any therapist working with your child clearly explain both her philosophies and techniques, but also to articulate her expectations for your participation, both during the session and as follow up outside of session times.  You need to continue and reinforce what’s being done in therapy for maximum results.  So many parents, according to my therapists, think it’s break time for them and don’t get involved.  Worse, they have no idea what’s being done, so they can’t replicate it later.   Also, you need to make sure your other caregivers, including your spouse/lifepartner/whatever (that’s you, Mr IT) are on board as well. 

The best part of speech today was unscripted.  Boy was playing with a tape dispenser, and R decided to use it as a problem solving exercise.  “The tape is sticky, how do you get it off your hands?”  Boy contemplated it for a moment, and flung it down the cleavage of his therapist.  Way to go, IT Boy!  That’s going for the gold!

Susan Etlinger’s most excellent blog The Family Room has a great post about what to do when your child is not meeting his or her milestones.  It’s a horrible feeling for any parent to think that your child might have something wrong with them, but it can be made worse by well meaning others who tell you there is nothing to worry about.

I remember when Little IT was 2 years old and she had a vocabulary of about 5-10 words, which is way behind where she should have been at that age.  Everyone told us not to worry, she would catch up, there were no problems.  Even her pediatrician said there was no cause for worry.  It wasn’t until I talked to a co-worker who said that her son, born one day before Little IT, asked her why his babysitter didn’t come to his birthday party that I knew something was off.  Even if Little IT had been thinking that, and I couldn’t believe she did that kind of thinking, there was no way for her to express it.  I took it upon myself (well, Mr. IT did help) to call Early Intervention in NY and have her evaluated.  The evaluation came back that she did have a speech delay, but it wasn’t a huge one.  It was as if everything in her brain was working right, but when it came to sending it out through her mouth, it couldn’t make the connection.  She was borderline, but they approved services for her because they were concerned that if the connections were not made, eventually it could lead to huge frustration and delays that would present themselves in other ways.

I cannot tell you how grateful I am that this conclusion was reached.  Little IT received speech services for a year, and within that time caught up to and exceeded milestones for her age.  Could she have been just a late bloomer?  Would she have caught up anyhow without the services?  Maybe.  A lot of people, well meaning but ill informed, said that to us.  But here’s the thing – therapy wasn’t going to hurt her, and we benefited so much from having an advocate in our corner.  Someone to watch her and make sure she was developing properly.  Speech therapy was a win win for us, and I’m so glad I didn’t listen to the naysayers.  It’s what got us up and running with IT Boy as quickly as we did, and he’s certainly reaping the rewards that have come from his therapies.  Why, just the other day he started going into down dog position, while climbing the stairs.  It’s wreaking havoc on my sanity, but I’m loving every minute of it.