The Whole Picture

Disneyland was awesome. Thanks for asking!! I never thought I'd be a Disneyland lover. I'd so much rather be a sophisticated snob, preferring New York to L.A. I do like architecture, museums, and art. But Disneyland is just so fun!!

It's like walking straight into the 1950's with it's miniature main street and pastel color scheme. I don't think one thing has changed since the day the park opened. I love things that stay the same. Walt's vision is still alive and well everywhere you look. Everything is adorable and perfectly maintained. There's not one flower out of place in the mickey mouse shaped flower beds, not one leaf left untrimmed, not one spot of peeling paint, not one carelessly placed wire on any of the facades. It's absolutely perfect.

It's big, bright, loud, expensive, and American to it's core. Everything is fake. Even the lake is pretend. It's only six feet deep and the ship is pulled along with cables. I've actually reached out and touched plants along the water, only to realize that they too are plastic. The amount of work it must have taken to create this place is unreal to me.

We go there every year, WITHOUT our kids. We took our kids once and Isabel just walked around and cried all day with her hands over her ears. I thought she might lose her mind completely during the fireworks display. It was all WAY too much stimulation for her. So, we just don't take them anymore.

Shane and I have a great time when we go. We're like a couple of children at the hotel the night before we go to the park. We jump up and down on the bed like big dorks, singing the Pirates of the Caribbean song. The next day we get to the park, ride on all our favorite rides until we're about sick, walk until our feet feel swollen, and then sit down to a meal of powdered sugar fry bread and mint juleps. We listen to jazz music, bask in the L.A. county sunshine, and remember why we got married.

We know it's money we shouldn't spend. But, it's such a refreshing way to forget everything for a little while and just let ourselves be wowed and dazzled and entertained. It was fantastic, but we're back home now.

Isabel saw the neuro-psychologist on Monday of last week. She held up so well that they did all of the testing in one day. We haven't gone in to discuss the details of the final report yet. Our appointment for that is next week. She did call though, and give me an overview of Isabel's condition.

She is autistic (umm-duhh!). Isn't it great to pay thousands of dollars to get information you already know? It's okay though. This is a report we'll be able to use for years to come through Isabel's schooling. It really pin-points her weaknesses AND her strengths and will help us to know exactly how to help her.

Isabel's biggest problem is her language delays. She's severely delayed in both her receptive and her expressive language (in other words, she doesn't understand what you're saying to her AND she doesn't know how to communicate what she wants to say to you). This is severely affecting both her ability to learn AND her social skills. She needs speech therapy badly.

She also needs some occupational therapy to help her learn how to take care of herself physically (dress herself, wash her hands, brush her teeth, etc.). She's not yet able to care for herself the way a five year old should.

The neuro-psychologist is much more concerned about the acquisition of these skills (language and occupational skills) then she is about her autism. She even went so far as to say that if we put her back on the gluten-casein free diet AND get her speech and occupational therapies, that there's a good chance she'll be mainstreamed some day.

She said that even though her autism will never go away entirely, there's a good chance that with the proper help, a future professional may not notice her autism at all. I think those were, quite possibly, the most comforting words I'd ever heard in my entire life. "with proper help.....may not notice her autism at all."

So the next step, then, is to get her the help.

The Medicaid medical investigator came on Wednesday of last week. I cannot tell you what this did to my nerves. DDD requires you to apply for Medicaid for your autistic child regardless of your income. Even Jenny McCarthy had to apply for Medicaid for her autistic son. She, however, was able to pay the $4000. dollars a month out of pocket for the therapies until Medicaid kicked in. We aren't able to do that. So, we have to wait until Isabel qualifies for Medicaid before we can get her therapy.

In order to qualify for Medicaid, Isabel has to be in immediate danger of institutionalization. Otherwise, they won't help her. And our insurance company doesn't cover anything for autism or developmental delays, so they won't help her either. If our insurance company would pay (even in part) for Isabel's therapies, then we'd be able to get them for her NOW and we wouldn't have to bother the state at all. But, they won't. So, unless we can come up with $4000. dollars per month (per child, remember I have Cale too, so that would be $8000. per month) she won't get any help at all, UNLESS they determine she's in immediate danger of institutionalization.

Wow. Thank God I'm not the one to determine whether or not she's in danger of institutionalization because I'd, of course, NEVER put my daughter in an institution. To be perfectly honest, I'm really not sure HOW they go about determining this. I know the last time I applied for Medicaid for Isabel, she had huge check marks under each of the categories they listed. Still, they turned her down. And, I really don't know that it'll be any different this time.

In order to re-apply for Medicaid, I had to prove that something was medically different then last time I applied. The one thing that is different this time than last, is that she is slightly malnourished. This did catch the attention of the Medicaid medical investigator. Isabel has actually lost weight since last summer because she won't eat any protein. This is due to the sensory processing problems she has, due to her autism. Food, especially protein, tastes very strong to her, therefore, she won't eat it.

This is why the developmental pediatrician has just diagnosed her with a feeding disorder and has determined she needs feeding therapy (which the insurance company won't cover because it's due to her autism). Not only is this new, it puts her in danger of eventual hospitalization (I don't know if this counts as institutionalization or not, but it should count for something).

I followed the advice of our DDD case worker and gave Isabel gluten and casein for the few days prior to the interview so that the medical investigator could see what Isabel is really like on a regular diet. This was risky, because gluten tends to cause more malnourishment. But, after some serious soul searching, I did it anyways. Better to get her the long term help.

My case worker also prepped me on how to answer the investigator's questions. She said, "You need to describe Isabel's worst day, not her best one. You need to describe what it's like MOST of the time. You need to NOT tell them about the occasional successful moment. Understand?" These words repeated in my head over and over during the questioning. Isabel sat under the table and cried during the interview, which helped me to remember my purpose.

My DDD caseworker (my angel) warned me about his medical investigator. She said "This person will seem very nice, but, SHE IS NOT YOUR FRIEND." To make matters worse, I know that my perceptions of what Isabel can and cannot do are OFF. I see all the things she does right. I WANT to see what she does right. And, figuring out exactly what is normal and what isn't is too hard for me. So, I did what I was told and just described her worst day like it's that way every day. To me, it felt a little fuzzy in the honesty department. But, it's what the angel said to do. Also, it did give a fairly accurate whole picture of what Isabel is like most of the time.

The woman asked me questions like, "Does Isabel dress herself?" I wanted to counter with, "DOES she or CAN she?" because that really depends on what she's had for breakfast, how much sleep she's had, what type of clothing you're asking her to put on, and how focused she is that morning. She cannot work buttons or zippers. She CAN dress herself, in part, sometimes. But, most of the time, she won't. Instead of going into all that, I just said, "NO." I found out that they really do write down every single thing you say so they can use it against you. The less information you give them, the better.

Hopefully, Isabel will get the help through Medicaid and DDD. It'll take about five weeks for them to make a decision. If she doesn't qualify for Medicaid, then Shane and I will have to take a serious look at getting Isabel SOME of the therapy she needs, instead of making our house payment. If this happens then I really don't know what we'll do about Cale. I'm trying hard not to go there yet. Keep us in your thoughts and prayers.