So….Ren got a new wheelchair….Finally. It only took, um, more than 6 months to come. We started the process last summer in June, had a guy here in August to have her fitted and finish up the order details, and I thought we’d have it in September. By October, I had to call to find out what was going on. “Good news!” they say, “Your insurance has approved the wheelchair!” I had been told in August that my insurance did not need a prior authorization, so why were they getting it authorized? Then they say they have to come out and get her fitted again since it had been so long since they sized her for it. He comes out, and says he will put the order in right away. At one time, I was told it would take maybe 10 days for the wheelchair to come once it was ordered. That seemed surprisingly short to me, so I figured, maybe 3 weeks or so it’d be ready. November went by, then December came. Finally, around December 20th (after several phone calls), we are told the wheelchair is in. I can’t help but wonder if it had actually been in for awhile. It finally gets delivered to us the second week of January.
Now, if the wheelchair was perfect, I’d be forgiving of the length of time it took, especially since Ren had a (not-s0-good) wheelchair to use in the meantime. However, it is not as light as I thought it would be, and the handles on it are just plain ridiculous. It has two handles that are tucked so close to the seat that one cannot actually push with them. Then there’s this odd single handle going straight up the back as well. The guy said he was having an engineer make us a new one, but it is all very annoying that we waited this long for it and there is this obvious problem with it. Sigh. It is cute, though. I love the hot pink color, and it is a much better fit for her – and is much better to handle – than her old one. So, though I am disappointed in the wait and the couple problems with it, I am glad that she has a better one.
As I write this, I hear Ren in bed “talking.” She had her IEP meeting last week, and since it was a re-evaluation, they administered several assessments on her. She is age 5-8, and her expressive speech development came out as age 2-7. That did not surprise me; I guessed she was at about a 2-year-old level. However, her receptive language development came out at an age 3-11. That seemed low to us. We know she is not quite the same as her peers developmentally, but we always felt she understood most of what was going on and what was spoken to her. Her weakest area was in vocabulary concepts, so that is the area that will focus on in her therapy, along with increasing her sentence length.
Despite her low test scores, we are happy to see Ren showing progress in her speech. She continues to say new words all of the time and imitates what we say often. She is saying many 2-word phrases, several 3-word phrases/sentences, and even some longer sentences (though they are disjointed, missing proper structure). It’s exciting to hear her be able to communicate more now and try to tell us stories (see video). And, considering when she was 3 years old I was preparing myself for the possibility of her never speaking words, I am happy with her progress.
Ren has great support at school. Yes, she is in a regular classroom with regular peers. She does have assistance with transitions (recess, lunch, related arts, etc) and she does have some extra teacher support in the classroom and is pulled out of the classroom for some small group instruction and for her therapies. She has speech daily, plus physical therapy once/week, occupational therapy twice/week, and adaptive PE once/week. To be honest, I am unsure if she is “right where she should be” academically (like she was in 4K), because I believe they have increased the expectations/benchmarks this year. I do know that she knows all of her letters and sounds and can identify about 10 (of their) sight words. She can count to 30, and write her numbers to 20 with some reminders of formation (she makes some backwards), and we are working on writing to 30. She also has several books at home that she can read independently and some with help. I think writing words is the most difficult for her right now. I guess I don’t think that is all that bad considering she has the speech of a 2 1/2 year old, and the receptive language of a 3 1/2 year old.
We have a couple appointments coming up in the next few weeks where we will schedule some surgeries on her feet and leg, and most likely the ones for providing alternate routes for her bowel and urinary “stuff.” I will explain those more after we have our consultations in the next few weeks.
Ren continues to participate in music therapy and swimming outside of the school day. She has been SEIZURE FREE since August. She has been healthy, she loves school, and is really doing well overall.
God is good. All the time.
In the video below, Ren is telling a story about her school day. She keeps talking about “jumping” at school. I later learned that they were learning about Jumprope for Heart in PE. Makes sense now.