Language, Learning, Lightness, Love, Life

For the most part in my crazy, chaotic, parenting life, I’ve just given up on personal goals. At the very least, I’ve decided to put all personal goals aside until Josh is about three because my Josh goals trump personal goals (this is an extremely important time period for language development, which can never be gotten back in Josh’s later years). Still, the one thing I did decide to do this year was to at least get back to the mat. I need yoga more than ever. Yoga keeps me balanced, yoga teaches me important things, without fail, every time I make it there and hit the mat. Make it there? Yes, while I used to have a very active home practice, I just can’t seem to get that back. I need the accountability of a group. I need to not think about what to do next. I need someone telling me; for now. Sometimes I cry when I am at yoga (as I do when I am at church). Sometimes it is the only time I cry. Every other place in the world, I hold it together (perhaps too tightly) for all of these people counting on me. About a month ago, I was moved to hold out an “L” word for each member of my family while I practiced.

Josh-Language, Ethan-Learning, Hannah-Lightness, Chris-Love, Me-Life (so that I can continue to give to my family). When I enter tree pose and am balanced, I see myself as a tree of life, giving onto those around me. I pray, “Dear Lord, please keep me healthy for all those who rely on me everyday.”

Although language and learning seem to come easy for Hannah (being nearly trilingual, as she is), she does walk around with a heavy heart often. She places lots of pressure on herself in school and in life, so for her, I ask lightness. Ethan has a lightness that always shines through. He has a joyful presence. He struggles with learning, however. For as brilliant as he seems (and let me tell you, this boy has been coming to me with brilliant thoughts and questions since he was three), he struggles to make good grades. He has recently told me that he thinks he had (has) ADD; he also wonders if he has dyslexia. I do not think he has dyslexia, but I do think (and have always thought) that he learns differently from most kids. I am not sure what to do with him for school next year. His enormous school (over 2000 kids), which is losing 50 teachers next year to budget cuts, just doesn’t want to deal with Ethan. He does fine they say (mostly B’s, a few A’s and C’s). Average. He flies below their radar. Their radar doesn’t have room for kids like him. Only for the really high achievers (gifted) and the clearly learning disabled who visibly struggle. We applied to get Ethan into CDH next year; not sure if he’ll get in. There isn’t really room. For the first time, I’m even thinking of home schooling Ethan. How can Ethan learn best? How can Ethan reach his full potential?

And then there is Josh. Language (expressive, as opposed to receptive) is not coming easily for him. Every last sound has to be taught. He has a substitute SLP this month, subbing at his school, who is from Children’s Hospital. In an addition to being an SLP, she is also an audiologist. It was nice to have a fresh perspective today. She immediately saw Treacher’s Collins Syndrome in Josh, she later told me, when we walked in the room today. I told her that although his ENT and genetic doctors suspect TCS, the blood test didn’t confirm it. She told me to basically proceed as if it is TCS because his facial features/irregularities are all TCS. She also told me that she suspects the reason he isn’t speaking much has more to do with his eating issues (he still eats only about 10 things) and less to do with his hearing loss. In fact, his receptive language is about that of a 2 year old, while expressive is that of a 1 year old. So she was the third (and final–I am going now) person to tell me to get Josh into the feeding clinic. She said, solve those issues first and then speech therapy will be more effective. She said that Josh has very weak facial muscles, along with weak lips and tongue. It was refreshing to finally have someone connect his eating and speaking issues. I’ve long suspected the two were related, but no one has ever confirmed it until today.

Finally, love to Chris. 143. I love that man. He is such a wonderful father to all three of these kids (whether there is a “step” in there or not). Chris and I do not have the one-on-one time together that we should. Josh is very demanding and I suspect we continue to allow him to be very demanding, given his special needs. Our genetic doctor told us we should have another child so that we stop treating Josh so tenderly. I can tell you one thing; that is not going to happen. Anyway, this love of ours limps along on half a leg and a prayer every day. And it remains. It is true. It is the real thing. As Chris said last night, he just knows we were meant to be. Still, I cannot wait for the day when we are able to give this love the proper attention and time that it should be given. Just as I have a need for health and life to support this family, this love between Chris and I is the very raft floating us all along. It is an extremely important commodity and we do well to preserve it at all costs.

Language, Learning, Lightness, Love, Life.

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1 comment
  1. Leah said:

    This is absolutely beautiful. Muscle tone can definitely affect speech – a feeding clinic is probably a good idea. It is SO wonderful when the SLP has experience with hearing loss! I hope Hannah finds her lightness – first-borns tend to take on a lot of responsibility and can pressure themselves too much. I also hope Ethan finds his groove – our schools tend to offer a generic approach to education, and some kids need to learn in a different way. Here’s to life and love – with those two things, the rest will follow!

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