Back To School?

Deciding what to do about Raquel's school situation has been a real challenge for me over the summer. I've gone back and forth in my head time and again. It's been one of those things that you wake up at 2am thinking about and can't go back to sleep.

Last week, after having a heartfelt conversation with Gabby about Raquel, I have finally come to a decision: she will not be attending the orthopedic class at Rock Springs - the only class that our school district seems to feel is available to her. And Gabby was definitely the deciding factor. She has such a special bond with her sister and although they don't have a "typical" sister-sister relationship because of Raquel's current limitations, they have a very real connection with each other and I love watching them interact - even when fighting. I keep reminding Gabby about how paybacks work, and Raquel continues to grow and is quickly approaching Gabby's height so I know what's coming...

I was told by my original behavior therapist, Elizabeth, very early on in this journey, that Gabby's perception of things is a lot more realistic to what Raquel's perception is vs. what I think it is. I have never forgotten that and it was one of the greatest pieces of advice I have been given throughout all of this. Whenever Gabby tells me what she thinks her sister needs, wants, or is thinking, I don't take it lightly.

The other day, I sat Gabby down in a pretty adult manner, and told her that I needed her help deciding what to do with Raquel and her school. I presented the options (the ortho class, finding a daycare, keeping her home, etc.) and asked for her input. She listened intently and became very serious, really understanding the importance of this. When I asked her what she thought I should do, she said, "How about this, Mom? Let's keep her out until January when she turns 4." I wasn't expecting that response at all and didn't know where it was coming from, so I asked her to continue. And a lot of really cool stuff came out that I wasn't thinking about. She said that she can't go back to the ortho class, that not only does the neurologist not recommend it, but she reminded me that since she has been out of school over the course of the summer, Raquel no longer makes the moaning sounds that she picked up from the other kids, and she no longer does certain behaviors that were, again, picked up from the class. That's a very valid point. I always looked at the cup as being half full with the sounds/behaviors and was glad that she had the ability to "model" after other kids. But Gabby is 100% correct - she no longer does these things, and now I wonder what she WOULD be doing if she was around typically developing children.

Gabby also told me that we keep noticing more and more improvements with her being on the medication, that she's not going to have a consistent school schedule anyways because the holidays are coming up (YIKES!) and she'll have a lot of time off, and it will be January very soon. She said that I need to keep her on the medication, get speech therapy going as soon as possible because Dr. Mower says that is really important right now, and then see what he says when we see him again in early January. Gabby thinks that if we continue to work hard with Raquel, she will be ready for a more suitable program when she turns 4.

That was a lot to take in from a 7-year old, but she's right. She doesn't belong in that class and it's not fair to her to put her there just because I want her around other kids, or because I need a break. I need to be selective about the kids she's around for her own benefit. I need to think about what is best for Raquel instead of what is best for everyone else.

So, I've decided that she won't start on Monday as planned. And I'm getting closer to starting up therapy. Since her pediatrician wouldn't sign the authorization form and it had to come from a specialist, her file needs to be re-evaluated by Rady Children's to verify services are in need. More and more paperwork, but I'm getting pretty good at staying on top of it and getting my calls returned. Karin has already agreed to resume occupational therapy and since she has treated Raquel before, does not need to do any evaluations, so once I get the go-ahead from my insurance company, it should be a pretty easy process. My goal for next week is finding a speech therapist that specializes in preschool children and getting the process going - PERIOD. A lot of wasted time this summer that I wasn't planning on, but that's how it goes. I'm just doing the best I can and taking it one day at a time, and not looking back with regrets.

Neurological Follow-Up Complete

This morning Raquel saw Dr. Mower for her neurological follow-up appointment. He continues to be optimistic about how things are progressing. He was a little irritated about the lack of therapy she has been receiving by the school district and gave me a Doctor's Orders note to give them which basically states that "Raquel REQUIRES speech and OT therapy as mandated by her IEP" and to provide for these services. He also told us that this is a legal matter, that they are obligated to provide therapy and can be taken to court for failing to do so.

The reason for his displeasure with her not receiving therapy is that he was not able to effectively track her progress. Depakote and speech therapy work hand in hand and he wanted to observe Raquel for 6 months on the medication with regular therapy to see if he feels it is working. If after the 6 months she continues to be non-verbal, he'd begin to start modifying her treatment.

I also gave him the phone number to my HMO Group so he can sign the paperwork authorizing services outside of the district setting. I want to get these going as soon as possible. And my reality about the district therapy is this: how will I ever know it's being done? Raquel can't tell me, I'm not allowed to be there when it takes place, and the only reason I even found out it wasn't being done in the first place was by drilling the teachers and bus drivers and asking tons and tons of questions. By doing therapy through my own private insurance, I will be allowed to screen them and find one that I feel is a good match. Speech therapy right now is critical and we need to have a therapist who is up for a challenge and will work at developing a special connection with Raquel and not just showing up for "work". It's also very important that I find one that deals primarily with preschool kids and not middle school ones.

Dr. Mower wants to see Raquel again in another 6 months and at that point we'll discuss possibly adding another medication if her speech has not improved. No 24-hour EEG for at least another 6-9 months. He gave us the blood work request so he can check not only the Depakote levels but also her liver functioning. I'll do this later this week.

Understanding Words

This morning, I heard Raquel starting to wake up in her room. I love when everyone is still sleeping and I'm able to be with Raquel alone when things are nice and quiet. I was laying there with her, giving her little kisses and said, "I love you." She gave me a slight smile, and I asked her if she knew what it meant when I said that to her. She nodded her head yes and gave me a big grin. Then I said, "And you love Mommy, right?" She continued to smile and then began lightly stroking my face. I am convinced that she understands words and the time I had with her this morning was very rewarding.

We have our next neurological follow-up tomorrow. I'm really looking forward to getting Dr. Mower's input. I've also spoken with our insurance company and they have confirmed that they will accept a therapy authorization from him instead of Raquel's primary pediatrician (since she refused to sign the paperwork.) Once they get his authorization, I will receive a list of local speech and occupational therapists that I can choose from, and then it's as simple as calling them and scheduling the appointment. I'm hoping to have her in weekly speech sessions and then OT every other week. I've also left a message with Regional to see how I go about getting my copayments reinbursed because those will add up pretty quickly.

I still haven't decided what to do with her regarding school. I know Dr. Mower won't recommend keeping her in the orthopedic class tomorrow when we see him, but it's so hard to find a "place" for her. This morning I was talking to Mike about it and mentioned putting her in the daycare down the street. He quickly reminded me that I can't even handle her at times and that she needs a special kind of place with special kind of people working there. If anyone knows of such a place, or where I can find one, please let me know.

Raquel continues to be the most difficult at the 10:30am time slot. I still think it might be a blood sugar thing and am curious as to what her neurologist will have to say about it. This past weekend wasn't the best and I had a really hard time redirecting her. And the hitting and scratching and biting was back. I should own stock in makeup concealer by now. :-) But she continues to grow and progress and overall, I'm very pleased with the results of the medication. We'll see what recommendations Dr. Mower has tomorrow. Wish us luck!