Tuesday, April 5, 2011

How much is too much?

When I made the decision to stay home with the kids, for at least some period of time, I anticipated doing fun activities in and out of the house and creating a learning-living environment. I looked forward to days at the zoo, science center, children's museum and many other activities in and around the city. I didn't expect that we would have so little time to actually do these things and it seems that time is becoming more and more of a rarity.

Bean spends a lot of hours in therapy every week and when we went to the diagnostic referral physician two weeks ago, she indicated that she would like to see Bean in more intensive feeding therapy. I agree, as does his OT and Nutritionist. I want to get him in to Thrive Place. His Nutritionist also works there and the company is owned by the same company that employs her and Bean's OT as EI practioners. I like their philosophy, I like their approach, and I like that Bean is already established with some of the therapists and responding to them. I also like that they make it a point to include siblings in therapy and allow siblings to play in the play area during therapy. I don't like that they are still in the process of becoming an approved vendor through our insurance and it's entirely too expensive to do out-of-pocket. Another option is the Children's Institute but I really want to stick with therapists he already knows if at all possible.

Bean had a nutrition session this morning. His therapist and I discussed another option. She can increase her time to every week instead of every other week and do an additional feeding therapy session to buy us time until we can get insurance approval. This is great except for the fact that it means that we will have 5 hours of therapy every week: 2 hours OT, 1 hour PT, 1 hour Developmental and 1 hour nutrition. I expect that we'll be adding in a speech therapist eventually, too. I know, I know. I shouldn't be complaining. A lot of mom's would give anything to get this many therapy hours for their child. Not to mention that it's free - well, apart from the taxes we pay. And I know that he probably won't qualify for nearly as many hours once he transitions at 3 years old. And his therapists are all fantastic. Still, it is incredibly taxing to have therapy every morning and I wonder if there is a possibility of too much therapy.

I know that early and frequent therapy is critical for children with special needs to reach their fullest potential. There are times, however, that Bean seems like he gets burnt out and I do, too. And despite the therapists all making efforts to include Baby J, he gets jealous of all the attention that his brother is receiving. With this additional hour of therapy, we'll have therapy every morning of the week. My kids still nap in the afternoon and though we try to do fun activities on the weekends, we still have errands and things to do around the house. This means that we have even less time to do those fun activities like the zoo and children's museum. That, and we need to find more opportunities for the boys to just play - not "play therapy." These activities have value and learning opportunities that are almost as important as therapy.

What it comes down to is that Bean really does need all this therapy. We need to get him eating, sleeping, talking and mobile and we need to deal with his sensory issues. I'm just going to continue trying to figure out the perfect balance and make adjustments when necessary. I will be thrilled if the time comes that he doesn't need so much therapy but I know that I will also fight to get him the hours that he needs if/when they say he doesn't qualify. For now, we may spend more time than I would like in therapy but I know that it is important and it is not too much. At least not yet.
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Also, I wanted to mention that we will learn more tomorrow about supports that may help Bean to be more independent and mobile. He is going to the Cerebral Palsy Clinic at Children's in the morning. No, he doesn't have CP but this was the most efficient way to get him in to see the physiatrist before she retires. He'll also be evaluated by their team of therapists. We will get their opinion on whether Bean can benefit from Ankle Foot Orthotics (AFO's) and I also hope that they can give us some new ideas and approaches for his physical therapy. More info to follow...

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