Thursday, September 8, 2011


Getting two kids ready for three schools in the morning, then heading off to work all day, to come home to do the paperwork and other odds and ends for two kids in three schools is E X H A U S T I N G. And I'm lucky. The Mad Scientist has made TRex's lunch and two healthy snacks each day and made sure the Dancing Queen's meds are within reach for the morning.

But, other than that, school is going well. Both kids are really enjoying it.

TRex loves his teacher and he may even have a crush. He told me she was the bestest. And the plan developed by TRex and I worked. Yesterday, he read books at the before and after school program AND drank his water. Today, he played with another kid (I'm guessing a first grader). He loves his class, he is enjoying his before and after school, and best of all, I don't have to force him out of bed each morning with a crow bar!!

The Dancing Queen loves, loves, loves going to her 'nother school and the new school (special ed preschool and mainstream preschool respectively). Each day she has fun and we know they are helping her.  At the special ed preschool, they are working with her on gross motor and fine motor skills. While cognitively, DQ is at or above age level, she is about 2 years behind in her gross and fine motor skills (due to extensive hospitalizations, surgeries, 22q deletion, hemihypertrophy, and lack of endurance due to heart and lung disease). So, working with the physical therapist and occupational therapist at the school is very important.  The teachers also help strengthen her.

Unfortunately, all of that physical activity leaves DQ very tired on her way back to her mainstream preschool. And she is on the bus for about half an hour or more, so she falls asleep.  That is not good because then DQ doesn't take her regular two-hour nap.  Soon, her body won't be able to handle it and she will start to get sicker. With her weak immune system, it is asking for trouble.

We didn't have this problem last school year because she was only on the bus for about 7 minutes.  However, the current bus driver alleges that it is impossible for DQ to get to her mainstream preschool no quicker than 25 minutes (same distance, yet takes 3 times as long!)  So, the Mad Scientist and I are at a loss. We had hoped this was just first week of school glitches, but after today, we've been told this is as good as it is going to get.

We don't have the money to pay someone to pick her up and bring her to her mainstream preschool. We don't have the money to pay for private physical and occupational therapy. And we don't have the money to quit one of our jobs to get DQ from the special ed school. We could pull her totally from there, leaving her in the mainstream school, but would that be wise? I don't know.

What I do know is that she cannot continue only napping for 5 or 10 minutes on a school bus rather than 2 hours on a cot.

Maybe next week will be better?


  1. My only suggestion this time is to talk with your mainstream school. Is it a public school?

    Here's the thing... children with special needs can begin at public school at age three in the PPCD program (preschool program for children with disabilities). This is why TFL is in his 5th year at school but is only in 1st grade. Call the school that TRex attends and ask them about having DQ tested to see if she qualifies, which I'm sure she will. PPCD will focus a lot on the motor skills type things and they will have occupational and speech therapists there to work with her as well.

  2. Thank you. The special ed preschool I'm complaining about busing is through the public school. DQ has qualified since birth for services, but didn't start until she was 5 months old. She received early intervention services until she turned three, then she went to the early childhood center in their special education preschool. The program is great, doing the whole preschool thing, plus therapies, and it is free. But the whole busing thing is doing no good for DQ. She woke up swollen this morning, showing her heart is working too hard and she was very tired when she had to get up. This was only 2 days no nap. The more tired she gets, the quicker she'll fall asleep on the bus, making the likelihood of a real nap 20 minutes later totally unrealistic. She needs the therapies, but the busing is bad. I know I could look into forcing accommodations, but it is too soon right now. We only have a couple of days evidence. Unfortunately, DQ isn't physically capable of us trying much longer. It is time to talk to the school directly and stop working with transportation.

    Thank you!


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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