A short hiatus?

Well, come next tuesday my “mommy time” will be on a short hiatus….I’ll still have a couple evening hours, but I have to go back to work. It is a short time…we only have two and a half weeks until the end of the year; but it is not making me happy to know that I have to leave Ben every day. My mom will be watching him, so at least he’ll be in good hands. I went in to school for a couple hours on monday, and decided I am not ready to go back. 🙂 Yeah, my kids are the best, but even all together on their very best day, they don’t match up to Ben. Sorry guys!

Scott and I took Ben for his IEP evaluation on tuesday. Basically, a special ed teacher, a physical therapist, a speech language pathologist and a few others (thrown in for good measure) played with Ben and talked with us for about fourty five minutes. The purpose of this is to evaluate Ben’s skills to find out if he needs any help with his development right now. The biggest issue at this point, because he is still so young, is his motor skill development. A very significant issue with Down Syndrome kids is that they have very low muscle tone. This is why Ben’s hands still flop out in the “touchdown baby” pose and why his legs flop out like a frog. Gravity is not kind to him, and it’s hard for his muscles to overcome gravity to lift his limbs. They gave us lots of ideas for positioning Ben while playing with him so that he can start to develop his muscles and get stronger. That is the big issue right now. Next week we have his IEP meeting (IEP = individualized education plan). At this meeting, goals will be set for Ben’s development for the next year. They also gave us some resources to get Ben physical therapy this summer (gotta call the insurance and see if that is covered) and to try and find child care for the fall (still working on this…anyone know any retired nurses?).

Even though I know that all special ed students get these IEP’s each year, and that these meetings will be a part of Ben’s education for as long as he’s here, it was unnerving to be on the “parent” end of the parent/teacher experience. What a great experience for me to have! Parent Teacher conferences make me woozy at school, because I think that the parents are coming in ready to devour me alive (sorry, folks…but it’s a little known fact that teachers fear conferences…I’ve just spilled the beans)…now I know that the parents must feel the same way.

Health wise, Ben has been going through a few more changes this week. His blueness and breathing have undergone another change and have become more prounounced again. He slept pretty much round the clock Sunday through Wednesday, and took two Loooong naps yesterday. He’s definately tiring more easily. His eating is very erratic….yesterday he only ate about three ounces per feeding…and two at nine in the evening. He just got too tuckered trying to eat. Of course, this means he was up at one thirty this morning shouting because he was hungry. And again at five thirty. Coffee is my friend. The nurse is coming today, so it will be interesting to hear what she has to say. Watching him change has become so common place to me…I tend to see things first, then Scott will notice them as they continue. We are wondering if he is entering a new phase in terms of his illness, a step off his plateau if you will. We’ll see.

Big plans for the memorial day weekend….Scott, Ben and I are going shopping tomorrow morning, then there is a shower for Ben on Sunday. Monday will be relaxing and probably dinner with the Corliss Grandparents. In the meantime, we need to find time to mow the lawn and get the tomatoes in the ground, also probably the basil plants (we’ll see…we almost killed them with too much sun a few weeks ago). Ben has had a big week with his IEP and the finale of LOST…his Aunt Karen was over and he just had to stay up and watch it. 😉 I’ll try to get some new pictures up this weekend.

Happy memorial day! Get out and enjoy the weather!


5 Responses to “A short hiatus?”

  1. Anonymous Says:

    Well we are excited to have you back. Even though it will be hard for you to be away from Ben. I hope all things are well. See you next week.
    ~Anjelica Jones~

  2. nivahunter Says:

    I’m excited to have you back for the short (holy crap, 2 days left!) time that we have left in the school year. I know that you’re going to be thinking of little Ben while teaching, but we will be happy to see you after such long time.

  3. Anonymous Says:

    Wanted to wish you good luck on your first day back to school. I’m sure you’ll have lots of well-wishes to share with Ben by the end of the day from your students and co-workers!


  4. Anonymous Says:

    The early intervention team in Walled Lake are incredible, I have worked alot with them. There is also a wonderful place called the Abilities Center in Walled Lake that we send alot of our children to for o.t. and p.t. and they do great sensory work-you and Scott continue to amaze me with all your planning and looking for the best for Ben!!!! We are looking forward to his first trip to the cabin, went up this weekend, and we have the pontoon in the H2O, and the hot tub in….Ben you will love it!!! Kym, good luck at going back to work-yep it is tough, but in 2 1/2 weeks its back to you and Ben time!!!!!! Love, Marsha

  5. Anonymous Says:

    Another great song

    Celine Dion – Album Miracle -Song If I Could. I cry every time!

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