I’ve blogged a few times about how we have continued to seek a diagnosis for IT Boy, only to wind up with no diagnosis.  He’s 2.6 years old, and we know little more about what’s causing his delays than we did when we first started noticing something was up.

Genetic testing turned up nothing.  One or two folks reading his progress reports have said they have seen spectrum like traits, but no one who knows the Boy think he’s on the spectrum.  The only thing we are still holding out on is having a brain MRI, but at this point it’s not for lack of trying, it’s for lack of room in the schedules of hospitals to do the damn test. 

We’re certainly concerned, as we are moving from Early Intervention to CPSE at the school level.  Will not having a label of what’s wrong cause IT Boy to lose out on the services he so desperately needs?  Is our plan of treating the symptoms enough to go in there with.  We have few people working with him who want a diagnosis, even one that isn’t something you would pin on a 2 year old, and that’s where I start to get a bit peeved. A diagnosis for the sake of a diagnosis doesn’t fly with me.

My OT, aka my personal voice of reason,  put it best – a diagnosis isn’t always what you expect it to be.  Sure, you can Google it, join a support group, and get a little bling badge to put on your blog (her words, BTW, which made me smile).  In the end, it doesn’t guarantee you anything.  In fact, it can often pigeon-hole you into getting less therapies because that’s what the other kids with XYZ ailment get. 

So, we wait.  We’re seeing good progress, and we hope over the next few months that he will come even further along.  Most of all, we just love the stuffing out of that little boy, and hope that we’re doing the right thing for him, as any parent would.

IT Boy just completed day 5 of school.  It’s out of order, but I’m counting it as a week.  And a success.

We had a couple of painful moments when the staff didn’t realize that his busing had not started yet, and they put him in line for the bus.  Realizing I was upstairs waiting for him in the designated room, they would take him off line and bring him up.  This disappointed Boy, and he would invariably be crying by the time he reached me.  I was the only parent to face a crying child in that room, as I probably would also have been the only one who had a crying child because he wanted to ride the bus.

On Monday, the dream was realized when the bus pulled up to the house to pick him up.  Upon seeing the bus, he started flapping with joy.  He was a little apprehensive when buckled, but he soon got over it when BobBob was there to soothe him. 

According to the staff in his classroom, he is adjusting nicely.  Today was his first OT session at school, and I am curious to see how that went.

Many people have been asking about the boy, assuming he was going to the school we originally planned to send him to.  Others are surprised when they hear he’s going 5 mornings a week.  I’m very quick to explain that we made the decision to send him to a school for children with speech and developmental delays.  I’m not sure why I must throw that out to everyone I meet.  It’s sort of like the guy I work with who for a time, always found himself inserting into every sentence that he was gay.  “As a gay man, I find that ad to be offensive.”  “As a gay man, it’s not easy to travel without people thinking you’re married.”  Sometimes it was less relevant a statement, but it was always there.  “As a gay man, the weather has been getting a bit chillier in the morning.” 

I want it out there.  I want people to know.

I’m doing it because I want people to understand that IT Boy is what a kid with speech and developmental delays looks like.  If he’s not so scary, and you care about him, you must care about others like him. 

I’m doing it to show people that I care about my son, and my husband and I will do what it takes to get him the care he needs.

I’m doing it to say that I will advocate for and fight for my son, whatever the cause may be. 

I’m doing it to show how proud I am of him and the progress that he has made, and that I couldn’t love him anymore than I already do.

And that it’s all going to be all right.

We’ve finally settled on a plan for IT Boy in terms of a preschool.  He’s not going to attend the nursery school that his sister went to in the 2’s, at least not this year.  We found a (hopefully) great program nearby that is run through Early Intervention and specializes in kids with language and developmental delays.  There are two similar programs in our county, and we checked them both out.  The one we selected is a little further away from our house, and in a non-traditional school setting (more office park-like than old building school-ish), but had great teachers and a warm, comforting atmosphere.  It felt like the right place to send him, somewhere that he could learn and grow, and a place where we would be setting him up for success.  He’s able to get some of his therapies from the staff there, but we’re also going to continue with the folks we have, albeit on a lessened schedule. 

The thing that freaks me out the most is that he’s going to be taking a bus to school.  They have smaller buses (yes, go ahead and say it, “short buses”) with car seats installed and a “matron” to get the kids on and off.  As my buddy Sara said, “He’s too little and cute to go on a bus!”  I certainly agree, but it’s going to be easier for the people who watch him while I am at work to manage getting him on a bus, rather than having to drive to the school site.  It was suggested that I ride to school with him on his first day, and spend some time at the place to help transition him into the new environment. 

Truth be told, I think he’s going to be FINE.  He deals with so many people therapy-wise that he’s got no stranger anxiety.  He’s a sweet little boy who is fine with other adults.  It’s his fellow students I think he’s going to have to take some time to adjust to.  IT Boy is a bit of a brute, you see.  Pinching, hitting and occasional biting are all a part of his repertoire, so that’s going to have to change.  Changes for all, this fall, for sure.

This fall, IT Boy turns 2.  It’s also the time he’s going to start going to pre-school.  We signed him up when he was about 6 months, to get him a place in the wonderful nursery school that his sister went to.  It’s the place where I cried when I sent her on her first day, and I cried on her last day, because I adored it so much.  The teachers are great, it’s warm and nurturing, and it seemed like it would be right for him. 

At least that was the plan.  We’ve come to the realization that it’s not in his best interests to be in a program that caters to mainstream kids.  He’s walking OK, playing OK, talking OK, but certainly not at age level.  There are a bunch of programs, offered through Early Intervention, that will better serve his needs, and best of all, can accommodate some of his existing therapists.

I call this entry giving up the ghost, and not giving up the dream, as others might see it.  I don’t see it as a setback, merely a change of plans.  There are a lot of places out there, and just because he’s not ready for one, doesn’t mean he’s not ready to thrive and succeed at another.  Hopefully, we can find the right program for him – the search starts now.

We’re coming up on IT Boy’s second birthday, which means we’re starting to get 6 month progress reports from all of his therapists.  The first came yesterday from his PT.  Net net, he’s still in delay mode, but making progress, even if it’s not as much as we would like to see.  She was going over his results and pointed out that in one metric he was at the very “top end of poor” and all it would take was one percentile point to move him into “below average”.  You have to laugh at these things or you cry.  Can’t wait to see OT, Speech and special instruction next week.

Another anniversary, one I had not given much thought to, is being marked by Little IT.  She’s been making a friendship bracelet and when asked who it was for, she said it was an “anniversary” present for her best friend.  “It’s our 7 year anniversary, so we’re giving each other gifts to celebrate.”  I had to point out that they’ve actually known each other for 6 years, but that did little to dampen the enthusiasm.

Marking time, we are.

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.

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. 

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. 

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!