Today was another busy day for Taylor. We had occupational therapy with Susan for about 1.5 hours and while I'm always glad that we're helping Taylor, it's exhausting for her and it's sad to watch because she really doesn't enjoy it. Susan tells me she will learn to enjoy it over time and it will feel really good to have her muscles relax (hunch your shoulders up to your ears and hold them there - that is essentially Taylor's common state - not very comfortable). But, while her brain is developing new pathways, the position is uncomfortable because it is new and scary. She compares it to a non-skier standing on top of a mountain, on skies, and knowing you don't have the skills to safely get down the mountain. We have to help Taylor relax so she can learn how to get down the mountain, so to speak.
I'm also spending a lot of time on the phone lately asking questions, seeking referrals, and learning a lot. When we were first connected with the Boyer Clinic we had heard how great they were and were thrilled to get help for Taylor. We didn't ask many questions because we didn't know the questions to ask. We're really learning how important it is to be educated and aggressive in demanding the best care. After Susan was so concerned with Taylor's muscle tightness (also known as "high tone" or "spasticity"), I pressed the Boyer Clinic for their opinion and researched the credentials of our physical therapist. We really like her and she is great with Taylor, but we've realized we have no idea what to look for in a therapist. As it turns out, ideally any therapists she works with should have speciality NDT (neuro-development training) certification to ensure they understand the intricacies of her brain's involvement with her developmental delays. And, unfortunately our therapist, great as she is, doesn't have NDT training. I spoke with our Family Resources Coordinator about my concerns (our therapist is great, but maybe not the best for Taylor's specific condition) and she has checked into to. Today she shared that they only have NDT therapists for children with spasticity or cerebral palsy - the exact condition we're working to prevent with Susan. When I expressed my concern (1. that they're not aware this is our most pressing challenge and 2. we aren't receiving therapists trained to deal with it), they agreed and promised to get back with me. Sigh......I hesitate to share this because I do think the Boyer Clinic is great and trust that we will have a good experience, but to illustrate how critical it is to be educated and press for the best. Taylor deserves it.
Today, Taylor had a big milestone for us. When I started writing this blog a few months ago, Taylor wasn't even interested in looking at most of her toys. A month ago, I was excited because I saw her bat at a toy (a red horse that rocks if she hits it) and today, she made the horse fly like crazy. Her motor skills have improved so much - she is interested in the toy, she makes contact repeatedly and enjoys playing with the toy. These are the gifts that make me realize we are making progress. Lauren was watching her and hearing me praise Taylor and she said, "Mama, Taylor is really smart isn't she?" Of course I agreed, and then she said "Her brain works really good, doesn't it?" Despite our efforts to protect Lauren and Jacob, Lauren is one smart, intuitive cookie. They continue to love her so much and it's such a gift.
On a sadder note, Hammy, our second fish, passed on following our vacation. For those keeping score - we're now 0 and 2. This time Lauren and Jacob realized Hammy died and they weren't overly distressed, although Lauren wondered why her fish died and Jacob's didn't. I didn't tell her that we're actually on to Fishtank II (Jacob's fish). We simply stink at having pets.
I'm also spending a lot of time on the phone lately asking questions, seeking referrals, and learning a lot. When we were first connected with the Boyer Clinic we had heard how great they were and were thrilled to get help for Taylor. We didn't ask many questions because we didn't know the questions to ask. We're really learning how important it is to be educated and aggressive in demanding the best care. After Susan was so concerned with Taylor's muscle tightness (also known as "high tone" or "spasticity"), I pressed the Boyer Clinic for their opinion and researched the credentials of our physical therapist. We really like her and she is great with Taylor, but we've realized we have no idea what to look for in a therapist. As it turns out, ideally any therapists she works with should have speciality NDT (neuro-development training) certification to ensure they understand the intricacies of her brain's involvement with her developmental delays. And, unfortunately our therapist, great as she is, doesn't have NDT training. I spoke with our Family Resources Coordinator about my concerns (our therapist is great, but maybe not the best for Taylor's specific condition) and she has checked into to. Today she shared that they only have NDT therapists for children with spasticity or cerebral palsy - the exact condition we're working to prevent with Susan. When I expressed my concern (1. that they're not aware this is our most pressing challenge and 2. we aren't receiving therapists trained to deal with it), they agreed and promised to get back with me. Sigh......I hesitate to share this because I do think the Boyer Clinic is great and trust that we will have a good experience, but to illustrate how critical it is to be educated and press for the best. Taylor deserves it.
Today, Taylor had a big milestone for us. When I started writing this blog a few months ago, Taylor wasn't even interested in looking at most of her toys. A month ago, I was excited because I saw her bat at a toy (a red horse that rocks if she hits it) and today, she made the horse fly like crazy. Her motor skills have improved so much - she is interested in the toy, she makes contact repeatedly and enjoys playing with the toy. These are the gifts that make me realize we are making progress. Lauren was watching her and hearing me praise Taylor and she said, "Mama, Taylor is really smart isn't she?" Of course I agreed, and then she said "Her brain works really good, doesn't it?" Despite our efforts to protect Lauren and Jacob, Lauren is one smart, intuitive cookie. They continue to love her so much and it's such a gift.
On a sadder note, Hammy, our second fish, passed on following our vacation. For those keeping score - we're now 0 and 2. This time Lauren and Jacob realized Hammy died and they weren't overly distressed, although Lauren wondered why her fish died and Jacob's didn't. I didn't tell her that we're actually on to Fishtank II (Jacob's fish). We simply stink at having pets.
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