Sunday, October 24, 2010


I think this one has been a long time coming. I'm very frustrated with some of Joshua's therapists. He has a new OT and so far not so good. His old OT was good but she knew nothing about working on sensory issues with him, she was very nice but we spent a little too much time talking and she wasn't very professional. His new OT isn't doing as much sensory as I had hoped. She had me fill out a sensory questionnaire and I even wrote specific notes about him on it but I'm not sure how much it has helped her working with him. She insisted that he would love a tight fitting suit but he hated it. He does love swinging and we put him in a spandex sheet and swing him and likes that but that's about the only part of her session he likes. Then she tries to work on fine motor with a pound a peg and she wants him to use the hammer to pound the pegs, duh he's not ready for that! I think I need to tell her how I feel, I'm not always good at that. She really got on my nerves Friday when Joshua wasn't feeling well and nothing was helping I suggested a video because I told her he always watches a video at his other OT. So we put the video on and she goes into telling me how bad videos are and that maybe we should use some real objects like the ones in the video while he's watching. When he watches one of his videos he's usually pretty engrossed in it and doesn't pay attention to much else.

I think what's bothering me right now though as much as all of that is that I feel so much pressure and I wonder if parents of other kids who go to therapy feel this way as well, I feel pressure to do the things the therapists want us to do, all the time. I have to admit to not doing as much as I should and certainly not as much as they want me to. I feel like he has to have time to just do whatever he wants to do. A big part of it is I don't know how much it will help him and he fights me on a lot of his therapy. If he doesn't want to do something he's not going to do it. Like walking, if he doesn't want to walk he will just not put weight on his feet, period. It is a waste of my time to try to get him to walk when he doesn't want to which is most of the time. His PT has a special walker that he gets attached to so he can't just sit down, it holds him in it. His walker at home doesn't do that and he hates it and rarely walks in it. This is it

There's also an argument between his OT in Hartsville and his PT who wants him to wear a hand splint which separates his thumb from his other fingers which he apparently likes to hold his thumb in and they don't want him to do that. Now he has the splint and he still tries to put his thumb in his mouth when he's wearing it. The OT was saying that it's only a bandage on the problem.

I personally think that most things as I have seen with Joshua will happen when he is ready. I don't know when and I question pushing him and spending all my time and energy on it when I don't know how well it's working. I think he will get there when he is ready. I know this has been a ramble but I guess what I'm trying to say is that I'm tired of all his therapists wanting us to do so many things me being stuck in the middle. I need to speak out more and tell them but sometimes when I do it falls on deaf ears. I have been signing with him for a long time and he hasn't picked up on it, which is frustrating to me. His early interventionist seems to take whatever the therapists say as gold even when I tell her other things. So moms of kids who go to therapy do you ever have issue with the kids therapists? Do you feel like they ask a lot of you?


Angela said...

You are NOT alone in the overwhelming feeling with therapy. It burns you out. Definitely follow your instincts. You are doing a great job. I say talk to the therapists and if it doesn't change then find new therapists who will work on his sensory stuff more. (((Hugs)))

Anonymous said...

I can totally relate.

We try to do some OT work each night after dinner while Jocelyn is still strapped in her high chair. Once she is loose, there is no getting her attention. We also installed a playground swing in our basement and we try to swing her at least once a day.

I try to do some therapy stuff with her during our bedtime routine, too. She focuses well in the bathtub, so I have her attempt a puzzle in there or putting linker cubes together, etc. I also do a deep massage with lotion after her bath.

Then I read her stories in our rocking chair and we always do at least a few books targeting her receptive language and some of the words she has attempted to say.

I have found that focusing on "therapy homework" for these two times a day has helped me stop obsessing about trying to do it every waking hour. I spent the entire summer trying to be her therapist 24 hours a day, and it wasn't healthy for either of us.

I have her in speech 3x per week and OT 1.5 times per week. We do "homework" twice a day. Other than that, I'm trying hard to just be mommy and not always being a therapist.

But it's so hard. I totally hear you about the pressure you feel. What I can't stand is when her OT tells me that she "should" be able to do something based on other things she can do. For example, with her ability to stack blocks and her ability to put things in a container, her OT said she "should" be able to do very simple puzzles. Yet, she either can't or refuses. I try and try to get her to do a puzzle, but she is just not having it now. When she says she "should" be able to do it, I feel like it's my fault. I know that's not what she means, but it still irks me.

Sorry you are going through all this, too. I never dreamed that I'd be taking my 1 year old to therapy 4x pe week...

GingerB said...

Hi Elizabeth, I saw your comment on my comment on Love That Max. My Hannah has a mysterious disorder that is vastly more common than your Joshua, and because she had a metabolic crisis she really crashed and we had some significant brain damage. But, she is a STAR. So, if you research my daughter's disorder you read mostly about deaths. I think it was identified in the late 70s, so there is not much to find but a couple websites for all folks with metabolic disorders. It is gloomy as hell, look when you are stronger or don't look, and as you say, diagnoses don't define the child. I'm learning this as we go!

I don't love all my therapists, with one invariably I feel shitty about myself every time I see him, and even though Hannah likes him alright, and I'm no wilting lily, I never tell him how poorly received his ideas are. As a whole, they are not all unified and I just follow closely the one guy who I think really gets my daughter and is a gifted PT. They do ask a lot of us, and because I work and have Hannah in day care I try to be pretty motivated but the most important role you play right now is being the loving and encouraging mom that you are. I tell you, nothing motivates my daughter like my praise and recognition, just keep it up and let him be himself - you are doing great. And freakin' hang on!!

Elizabeth said...

Thank you all for your comments! I really appreciate them! I can't tell you how wonderful it is to know there are others out there who understand!

Angela - I sent an e-mail to the OT telling her how he just zones in on his video when he's watching them. OTs in our area are hard to come by. We stuck with the previous one for 4 months mostly because there was no one else. For now I'm going to stick with the new one since he is on a waiting list for a sensory gym in our area and he should get in within the next few months. His OT is a piece of work though, coming to his first sessions in a tennis skirt! She's a real princess.

I know I am too hard on myself and then sometimes I'm not hard enough. I still wonder how much good all of the therapy does so when he resists me I won't fight him because my job is to be his Mom more than his therapist. We will keep on keepin' on though!

Angela said...

TOTALLY understandable about needing to stick with the therapist. At least for now. I'll be praying either the therapist changes her ways or you get a good therapist soon.

Elizabeth said...

I wouldn't waste too much energy on this therapist and I'm not going to, I doubt she'll change much but hopefully soon he will be going to the sensory gym, I've heard wonderful things about the therapists there!