Monday, February 28, 2011

The Boy and OT...the Conclusion

First of all, for those of you who took the time to text, email or call me today going..."I read your blog and I can't stand it! Is he okay?"...thank you. And I'm sorry. I didn't mean to make anyone worry. And yes, he's okay. He's the same little boy he was a week ago (at least that is what I keep telling myself), he just got a crappy diagnosis in the meantime. So I won't try and leave you all in suspense or anything. He's fine. But he is severely lacking in muscle tone. And he needs OT therapy. A lot of it. But overall, hopefully, he will be fine.

So, now onto what happened. First of all, let me touch on the tricky subject of discussing any sort of an evaluation with a 5 year old. They are old enough to know what's going on. The Boy has been in some sort of therapy at this particular place since he was 12 months old, so it isn't new. But he also knows he has to go to speech to "get help with his words." And sometimes he asks me how come none of his friends need to get help with their words. So this was difficult ground to tread for me. If I tell him too little ("we're just going to go play in a fun room with fun toys" for example) then he's going to know I'm full of shit. He's going to be scared and want to know what's REALLY happening. But on the flip side, if I tell him too much ("Mommy's really worried because you don't seem to be as strong as your other friends and you can't do a lot of the things they can do...") then I am telling him something is wrong with him. Obviously the correct answer is somewhere in the middle. And that's what I went with. He walks past the OT rooms all the time when going to speech so I asked him if he remembered those rooms and he said yes. I told him we were going to meet with Miss C, and do some exercises in those rooms and see if we could do all the things she asked us to do. He was stoked. Like I said, he walks by those rooms all the time and now he finally got to go PLAY in one? Hot damn. He was in.

So "in" that even when he woke up with a horrible cold on Friday, the first thing out of his croaky little throat was, "Can I still go to the gym today Mommy? I promise I will cough and sneeze into my elbow..." So off we went (ball of Kleenex in Mommy's purse to catch the snot...). I had never met this particular therapist before, but she was great. I want to say that up front. I love, love, love this place where he goes and have yet to meet a single therapist that was not fantastic. So she was awesome. I'm going to try and remember the things she had him do, and then I will tell you how he did them. First she had him go from a standing position, to laying down flat on his back, and then back up to standing. Of note here was that he rolls and pushes off the floor to his side to get up to standing. Doesn't ever just come straight up or use his stomach muscles at all. Then she had him lay on his tummy on an elevated mat and put his arms out in front of him and legs up in the back (flying like Superman) and count to ten. He could only hold it until about 4. Then she told him he was going to be a rolly polly bug and had him lay on his back, then roll up like a bug, and bring his knees up and try and touch his nose to his knees and count to ten. Again, maybe 6 or 7. Then she had him jump on one foot, and he seemed to be able to do that. The next big exercise thing was to jump on a trampoline, then walk across a balance beam to another little platform thing and then jump off. He seemed to do okay on that, although his lack of balance was very evident.

Then she hung up the little trapeze thing and I knew things were going down hill. My boy does NOT like to have his feet off the floor. Not at all. Immediately he said to her, "Why did you put that up there?" Very hesitant. But he listened well, and I reminded him that we were here today to see if we could do everything Miss C wanted us to do. He reluctantly jumped a few times on the tramp, walked across the balance beam and then sat down at the end. No way he was going to swing from that thing. But like I said, the therapist was fabulous and she eventually got him to hold on the bar with his hands and allow her to move him from the mat to the floor. I was shocked he even let her do that. Again, no way he had the strength to hold on with his hands by himself and support his body weight.

Of course by that time he had found some sort of large sand-filled lizard thing and was attached to it, so she put that on the top rung of a ladder and asked him to climb up the ladder to get it. He nicely said that it would be helpful if she would move the lizard down a rung or two so he could reach it while standing on the floor. I laughed a little. Gotta love the bargaining power on that kid. Again, he hemmed and hawed and made all sorts of noise (nicely), but eventually did try and get up the ladder to "save" his friend the lizard. His legs shook horribly and the look on his face was pure fear. I had to look away. There were several times during this evaluation that I had to look away and think of puppies and kittens so that I did not cry. I didn't expect that. I really didn't. But was hard to watch. I'll get more into how this all effected me later.

Okay I need to skip past some of this stuff or this post will be way too long. But he ran up and down the hall, "galloped" up and down the hall, "skipped" up and down the hall... He threw a ball, caught a ball from her, stood on those little dots on the ground and jumped from one to the next, then jumped from one dot over to the mat...etc... Then they did a little simon says type thing where she stood in front of him and asked him to mimic what she was doing. Then she clapped 4 times, he clapped 4 times, she crossed her arms to go to the opposite knee, she took one arm and wrapped it around the top of her head to touch her ear and then took the other arm and crossed it across her chest, she did arms out to the sides and then twisted the body, and then the last part of that was to keep everything still and just follow something with his eyes. I would say he did about half of them correct.

Then she brought out a desk. And they sat down and I thought, "Oh, thank God the physical stuff is done. Bring on the fine motor skills...he kicks ass with these..." She had a worksheet that was divided up into different sections. The top section had some sort of shape or line in it and he was supposed to copy it onto the bottom section. I was watching and he did all of them great. I was smiling with joy. At least he "passed" this portion. (Wrong). He got to draw a picture at the end. She told him to draw a picture of himself. He drew a spider. Then he wrote his name. Then she had him cut out a circle. He did all of that great. And here's where I could have been knocked over by a feather.

She looked at me and said, "Did you see how he did all of that?" I told her I thought it all looked pretty good....??... She said that while he was drawing he was completely leaning into the table. He was stabilizing himself. And that he switched hands because one side got too tired of holding up his body. Wha? Huh? I thought he was ambidextrous. Apparently not. And when he went to use the scissors, he brought his elbow all the way up in back and used that arm to stabilize himself on the chair. He physically cannot just sit straight up in his seat and write his name. He physically can't sit in a chair without stabilizing himself.

He physically can't sit up straight in a chair without stabilizing himself?

And that's when I almost lost it. I knew that he had gross motor skill issues. That wasn't a shock to me. But what WAS a shock was that the physical issues have now gotten so bad that they have effected his fine motor skills. Of course I immediately went through every single time I have seen him sit at any table in my mind searching for a vision in my head of him sitting straight up without leaning or stabilizing on anything...and of course I have none. He has never done it. He can't.

When we first got there she asked me about any notes or anything from his teacher. I told her that the main thing we had talked about during our last parent/teacher conference was how even though he was clearly really bright, he took a long time to accomplish the tasks. She thought this was because he seemed to be a perfectionist. She told me he was really smart and that he NEVER got any answers wrong, but that he was one of the slowest ones in the class. She thought because he was so concerned about getting it right that it was taking him a long time. She said he was a perfectionist and didn't want to do it at all if he wasn't going to do it right. I had told the therapist this when we first started. She now told me that it probably wasn't that he was being a perfectionist. It was because the habits he has gotten into to make up for his lack of muscle tone make everything take twice as long. His physical limitations are making everything much more difficult to achieve. And THAT was probably why he was doing things slowly.

Fuck. This was much worse than I thought. And I sat there wanting to shoot myself for making the decision to take him out of OT when he was two. What had I been thinking? Look how far behind I had put my son...I can't believe I allowed it to get this bad. I had no idea. I really didn't...

So we wrapped it up with her telling me that there was no question that he needed OT. Not only did he need it, but he needed it pretty badly. And no group either. He needed one on one therapy to catch up. Apparently the "tricks" that he has been doing over the past few years to be able to do everyday things have taught his body and muscles really bad habits. And without some serious intervention the gap between where he is physically, and other children his age are physically is just going to get bigger and bigger and bigger. And what is going to happen (if that happens) is as he gets older and ego and pride start to come more into play, he is going to disengage from kids his own age (and intellectual level) and lean towards kids much younger that aren't such a physical threat. I see that happening already when the kids his age go off to play soccer and he just quietly retreats.


So...that's where we are. He needs to get OT. And he WILL get OT. But you guys...I know it isn't a politically correct thing to talk about when we are talking about the well being of my kid, but...OT is $99 a week. Add that onto the $66 a week I am already paying for speech and my child is now requiring $165 a week worth of services. That is $660 a month. Do you know all where I can find $660 a month? Because I sure don't.

And here's my disclaimer: I know things could be MUCH worse. I really do. And I also know there are TONS of people out there who would KILL to have a kid that "only" has the issues my son has. I know that, I really do. And I am honestly thankful to have the amazing kid that I do, and I'm so sorry to any parents out there that have to go through so much more than we do. That being said...this is really hard. I am so freaking sad for my son. I look at my daughter and things that just come so easily for her are things that my son is going to have to fight SO hard to achieve. And it breaks my heart. She is seriously already way stronger than him and can already do many things that he can't. And I'm afraid to celebrate her achievements because I don't want him to feel bad...but then that isn't fair to her...Ugh. Just a hard situation.

On a lighter note: My son has NO idea he has any issues. When I told him we were going to start to do OT weekly he said, "Hooray! I love the gym room." He tells me all the time to feel his strong muscles because he is a big, growing boy... He is fine. More than fine. One of the happiest kids you will ever come across. But his Mommy? She's not so happy right now. And thus we'll end this downer of a post. Again, thank you for those following and those that were concerned. I just need to process this for a while and then I will bounce back up and put that smile back on my face. I will put my arms around my little dude and thank god that he is smart and that his brain works great and that mentally, he is a rock star. And I will thank my lucky stars that I am blessed to have the amazing son that I have.


Laraf123 said...

It sounds like your son is getting exactly the help he needs right now--even though it's coming at quite an expense. (I don't know where I'm going to get the extra $200/month for prek, so I can't imagine $660) Here's the thing, as someone who has worked as a special education teacher in public schools for 15 years, you want him to receive these private, outside services for as long as possible. Please don't rely on the public system--it's overloaded and only gives the barest minimum of services. (The professionals are well-educated and well-intentioned but burdened with impossibly large caseloads) I can't say this to the families of my students but I can say it to you. Private services are much, much better. Is there an Easter Seals facility with a sliding fee scale nearby? Can you appeal your insurance? Hoping it gets easier.

Carey said...

I'm glad you trusted your gut and went ahead with the OT eval. I hope the extra OT will help him catch up - and I please don't be hard on yourself. I know how us parents can be... Hang in there!

Calliope said...

oh my goodness, honey. You must be so exhausted from all of this. Your son is amazing and wonderful and SO loved. This is just going to be another adventure...I'm thinking of you tons. ((love))

Yellzer said...

My eyes are welled with tears. This post just breaks my heart for both of you (mostly you because he has no idea right now and you are clearly suffering as a mother)and makes me so very thankful for my own child's health. My only suggestion, as far as the cost of the therapy goes, is to look at social security/disability benefits for Boy to cover some or all of the cost. Suggestion aside please know I am sending my love and emotional support. Take care :)

Billy said...

Your kids remind me so much of my siter's kids - a boy and girl with about the same age difference (my sister's kids a tee bit older), I even think the two girls share the same first name.
The boy had/has many problems. He too has trouble with motor skills. Has difficulty holding a pencil. He also was ambidextrous but that was actually him getting tired.. speach problems (between OT and speach, sister chose OT. finances plus didn't want to burden the kid with too many things). Oh, and he has social issues too. No point really for my rumbling, just hope your kid (who sounds like a total awesome young dude!) does ok!