Two pieces of good news regarding intensive therapy services.

#1- Riley's Medicaid was approved and he'll be added to the state's waiting list within about a month. If all else fails, we'll at least have a place in line for those services. The waiting list is anywhere from 14 months to 22 months depending on who you ask. Two kids on a local yahoo group I'm on were added not too long ago with their "places in line" around 250-260.

#2- Our state is inching toward mandatory insurance coverage for autism related therapy. http://www.autisminsurancenow.org/ We should know a little more next week.

Either way, there's light at the end of the therapy tunnel.

Damn you, corn.

When we first started the GFCF diet, I bought some Gorilla Munch cereal for Riley. He had reactions around then (stimmy and constipated) so we cut it out in case it was the cereal. This past week we added the cereal back in to see if he could tolerate it. Um, no. Big, fat NO. Yesterday was one of the worst days I can remember in a long, long time. He's actually with my mom this afternoon because I knew I needed a break.

And on that subject... of breaks, I mean. A few weeks ago we made the decision to stop doing the two hours of therapy a week we were doing out of pocket to use that money toward respite. I already do 3 hours per week during the day so that I can get work done and can get some sanity. A very minimal amount of time, really. But we've been able to afford it for the most part. Now, we have decided to use that therapy money toward respite in the evenings every other week. We took advantage of it last night, and it was much needed. I love our babysitter and cannot tell you how grateful I am that I hired her when I did. She's dependable, she's a trained therapist, and most of all she is so, so good with my kids.

In some ways I feel guilty, as though this is a luxury. It's not. It's a necessity in our family. I really want to stay married and be a good mother to my children. If this is what it takes, so be it.

I spent the entire car ride last night to the restaurant we went to crying and venting. I still have so much grief to work through. I'm still so pissed off and bitter that we did not get the life we expected. That Riley didn't get the life I wanted him to have. I keep telling myself that he's come very far and that we're doing what we can at this point. I just so wish he was one of those "easy" recoveries. I do realize that other people's kids have far more issues than Riley. I keep that in the forefront of my mind often, and try to be grateful for all of his strengths. At one time he was on 11 supplements and I thought that was a lot! My hats off to those of you who are fighting the good fight. I feel like some days I just want to admit defeat and accept that Riley will never improve. But I think in my heart I know that's not true.

We're still waiting to hear about getting on the waiting list for the medicaid waiver. Our state is also teetering about perhaps making insurance coverage mandatory. If that happens, we'll have services very soon. Honestly, if it doesn't, I don't know that we won't consider taking a loan out and getting intensive services ourself. Each month that goes by that he's lacking these social and communication skills makes me so sad... mostly because I know the full time therapy would help him so much.

Yikes, this wasn't exactly a heartwarming post!

Phrase that made me smile

"I like mushrooms."

-Riley, unprompted at dinner last night.

(It's been a while since I've done one of these. I should try to do them again!)

DAN! appointment
This morning I took Riley to see Dr Van Dyke, our Defeat Autism Now! physician. We hadn't seen him since I think the end of January. My mom came along to help with the kiddos. When Dr Van Dyke came into the playroom to get us, I said, "Riley, who is that?" and he looked up at him and said, "Hi Dr Van Dyke." It was the sweetest moment!

The appointment itself was a little jumbled. I didn't come in with a list this time, and I felt like I had a little bit of venting to do. He's always great about listening to me vent. ;) I gave him the run down of what supplements he's on now, and we talked about what Riley's big issues have been. I told him hyperactivity, interpersonal skills/communication as well as stimming and issues with an exaggerated "flight or fight" response (Riley has been unlocking and running out of our front door in a few seconds flat when he gets really upset) We also talked about yeast and viral stuff.

We are going to do a test to see where his neurotransmitter levels are. If they are off balance, we will supplement where needed. Dr Van Dyke said this is something he's been seeing good results with lately. It's worth a shot, and will likely be covered by insurance.

Since yeast is (finally) under control, thanks to the Enhansa, I asked today about viruses. Long story short, Riley has had viral symptoms over time. We may or may not run a Mumps titer, which is one we agreed would be worth it. Otherwise I may give lauracidin a try as an anti viral, but not right now.

Riley is on three core supplements right now: Enhansa, Mb12 injections, and folinic acid. He also gets probiotics alternated with coconut milk yogurt. We're still GFCF. I'm hesitant to add anything else in at this point. We'll see what happens with the neurotransmitter levels.

IEP meeting
This afternoon I sat with the teacher, speech therapist, and OT that have been working with Riley in home since last September. Also there was the school districts LEA. Boy, this was a fun meeting. Without going into a lot of detail, Riley is going to be in an inclusion "classroom" next fall, 4 mornings a week for 2.5 hours a piece. He'll get that, plus a half hour of speech and an hour of OT each week. I was very pleased with our IEP goals as well. I feel at peace with the services they are giving him. I cannot wait for him to be with his peers. I think it will be so good for him (and for me, and for his brother) He has met all of his goals from last summer. Breezed through them, really. So I'm looking forward to what the next year will bring.

Today was a positive day, though stressful. Dr Van Dyke is always very positive, and always says he believes Riley will recover. He said it today again, that he thinks Riley is making great progress and he is happy with it. While it feels like it's taking AGES for my husband and I, I guess you have to put in perspective that we just learned he "may" be on the spectrum 13 months ago, and started the diet/biomedical stuff last August, so 10 months. He has come very, very far in that period of time.

One suggestion the Dr had was to video Riley once a month again. We hadn't done that since last winter. I think it might be time to get out the camera and do some comparison videos.