I've been home with the kids this past week (on vacation - ha ha, that is more of a contradiction!) since Chris returned back to work the week before school began. After Monday at the water park, the rest of our week was filled with errands, therapy appointments, school appointments, and generally tying up loose ends to get all three kids ready for school tomorrow. Which brings me to Thursday....
Thursday was one of those enlightening reminders that I have a child with special needs. I say reminder because quite honestly, I tend to forget. On a day to day basis, Leo is just like my other babies were. He's inquisitive and determined, joyful yet ornery. I know he's hitting milestones later than his peers, but as his mom I guess I've adapted and adjusted to his daily life. Then Thursday came and it hit me in a way I wasn't prepared for.
Wednesday was Leo's back to school "home visit". He'll be attending Early Head Start again this year for daycare. They're a part of our school district program and have been a perfect fit for Leo since there is a 4 kids to 1 teacher ratio, staffed by certified teachers who are trained to work with children who have disabilities. During our visit, we reviewed Leo's progress from over the summer. On the plus side, he's gone from pulling to stand to now cruising. Big accomplishment! On the minus side, only baby steps dealing with his texture aversion and he still won't eat table food. In my mind, not a big deal - we'll improvise at school just like we have at home. In the school's books - this requires a host of planning, aka... meetings, paperwork, red tape. Three days before school begins!
Thursday consisted of a series of phone calls - the school Family Resources Specialist, the Program Coordinator, the Program Coordinator specializing in Disabilities, the Program Dietician, and finally our Pediatrician. Normally, this number of phone calls wouldn't bother me. But today, I felt my first twinge of "is this what I have to look forward to when Leo starts school?" The conversations included words like 'provisions', 'modifications', 'reimbursables' and phrases like 'federal guidelines', 'physician's orders'. Since the Head Start program is federally funded they must follow guidelines with providing food to the children. I'm not allowed to take food from home, and we have to rely on the school dietician to work with the cafeteria on a planned menu for him.
The problem is, "if" he picks up a bite of food from his tray and places it in his mouth, he refuses to eat it. He won't eat anything that's not mixed with a smooth texture by way of gagging and appearing as if he's choking.
The center can't allow outside food. The teachers can't mix and prepare Leo's food because they aren't certified for "food handling and preparation". The items Leo needs can't be purchased by the center without special approval because foods purchased must meet certain requirements for "reimbursement". The cafeteria who prepares the daily lunches for the children has to meet and agree to whatever "provisions" or "modifications" are being made.
Even though (after a full day of addressing this) we were able to come up with a temporary solution for this week (until meeting and coming up with a permanent one), all of these rules, regulations, and conversations left my head spinning and made me just a little emotional!
For my friends that have a child with a disability, especially those with children in school, have you been there? Are you feeling my "moment"?
But instead of curling up in a ball and waiving the white flag, I had to find my bright side.
- Leo is blessed to have parents who will do whatever it takes to help him succeed.
- We are blessed that the staff at Early Head Start love Leo and put his best interests at the top of their list.
- There have been hurdles and there have been roadblocks in seeing milestones happen... Yet we have continued to see Leo overcome them.
- God is on our side, and through prayer He has shown us this time and time again.
- This too shall pass.
This moment just might be small compared to the many we have to come, but I can't anticipate what is to be or be anxious about the unknown. What I can do is my very best job as Leo's mom, making sure he has every opportunity available to him for his success both today and in the days to come.
I have high hopes for Leo this next school year.
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds for Christ Jesus." Phillipians 4
A few fun highlights from Leo's summer of 2013....
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| My first "Family 5K" (the Must Dash Race, June 2013) |
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| First ride in a swing (Family 5k in July 2013) |
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| I had fun being silly with my sister Meris |
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| I played with my brother Seth. A lot! |
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| I celebrated the 4th of July |
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| I ate ice cream from Ham's Orchard (July 2013) |
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| I had my first trip to the beach. (Family vacay 2013, Galveston Island) |
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| Good night Summer 2013. You wore me out! |
With love,
Joyce
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