Up and Down

Today was a busy day. Elise had occupational therapy in the morning. Hubby took her and said that she did well. The boys had haircuts in the morning and then played in a park. After lunch, I had a filling removed and a temporary cap put in place. Then, off to Costco and dinner out. In between it all, I tried to fill out and organize the paperwork that has been piling with all of Elise's appointments, evaluations and you name it.

Yesterday, hubby and I had lunch with his colleague and wife. They have 2 boys, one in college and the other in high school, that are autistic. It was wonderful to have their support and talk with them about their experiences with everything on their 15 year or so journey. We talked about insurance issues, special education, what they found helped their boys the most, the doctor Elise is seeing, the UCLA program and lots of other things. They were particularly helpful about the IEP (individualized education plan) process. They've been through it many times, the wife's sister is a special education teacher & the wife is an experienced advocate for special education concerns. She is going to send us some excellent materials prepared by a lawyer teaching parents how to navigate the process.

To me, Elise has seemed a bit more off the last couple of days. Yesterday she was getting visibly overwhelmed often and was harder to reach. Today was better, but not as good as during the week. She ate McDonald's for lunch and pizza for dinner - not only was this not nutritious, I really believe she doesn't tolerate these types of foods well. I'm becoming quite a believer that dietary changes will help her. We were moving towards the GFCF diet and, except for eating out, have pretty much eliminated artifical flavouring, articifical colors and dyes & preservatives and now eat more organic fruits and vegetables to help reduce the pesticide exposure she has. The UCLA program suggested we not continue changing her diet so that we'll know the effect of the treatment she is receiving. If she's undergoing dietary changes and behavior therapy, how would we know which is helping (or not helping) her? That sounds reasonable, so we're keeping things where they are for now. Once the program ends, we'll likely resume and implement the full diet. At the very least, I'm very suspicious of dairy products for her. After her terrible diet yesterday, she's totally constipated again today. Keep in mind that she's still taking an antibiotic that has a side effect for some of diarrhea. She's the opposite! Of course, I also forgot to give her the probiotics this morning.

What's really made this a difficult day is that I'm completing yet another questionnaire for evaluation. The last few weeks, I've been really successful and hopeful as I've focused on her strengths and the victories we've had recently. Well, completing the questionnaires just drives home her deficiencies. It's really difficult to see I have to honestly answer "Some of the Time" to the statement "You can easily get your child's attention by approaching him or her, or moving him or her around slowly." I can't even honestly answer "Half of the Time" to that statement. Then, I look and see this is a criteria that parents answer for children from 0-3 months old also. It just makes me feel so depressed and that the gains we're making are pointless in a way. She's still so deficient in so many things. I'm trying to turn my thinking around on this and instead focus on how much more positively I can answer some of these statements since the first time I completed this 6 months ago. It just makes me realize how far we have to go and how some of these things may realistically never be achieved. That's what I'm feeling right now. Hopefully the morning will bring a more sunshiny view of things.

The other thing that has me really down today is having to write a letter to her school to withdraw her. I can't even begin to imagine how difficult it's going to be to pack up her things on the day she leaves. Her school is taking pictures on Thursday. Hubby made the comment this morning that we should get her class picture so that we can remember that once upon a time she was in a "regular" classroom. That was when it really hit me. Having her leave the school is best for her right now, but it's seems so final and like fully admitting that she doesn't function well in the regular world. She truly is special needs. It's unbelievably difficult to accept this. Just thinking about this makes me start to cry. It's funny the things that will just make me step back and realize the magnitude of what is happening to our family, mostly to her. It just seems so awful. I know there is lots of reason to hope and I know I'll find reasons to hope again tomorrow, but for today, I'm feeling despair.

When I focus on the tasks at hand for any given day, things are much easier to handle. It's when I focus on the uncertain future that things seem so out of hand. Good night.