ABA

Well, after much back and forth over the last 2 weeks, I think it's finally settled. Holden will get 5 hours per week in the clinic and 2 hours per month at home. Funny, they argue and argue that it has to be provided in the child's natural environment (home), and yet when I offered to have thearpy at home only TWO hours per MONTH, with the rest being in the clinic - they approved with no problem. Uggg. Frustrating.

So, they're going to check their schedules and find out when they can fit him in. Will be going 2 hours on Monday and Wednesday and 1 hour on Thursday.

He's doing really well. I think the MB12 shots are really helping him. He's saying things now. More consistent with signing, and definitely more focused and noticing things. I can only pray that the progress continues...

....aaaand the fighting continues

If there's anything I've learned over the past 6 months, since Holden's diagnosis, it's that you don't get anything unless you fight for it. I've been going back and forth with Early Steps since last Monday - 10 days - about Holden's services. He was approved because there was a NEED. Yet, it's like pulling teeth to get them to send an approval to providers. See, it must be on their terms. The fact that home-based therapy didn't work for us over the past 6 months (3 therapists, only 50% of the hours used due to therapists not showing, and starting services LATE, and, excuse me for being blunt, but crap services), means nothing to them. I was told today by the provider I chose that they could't get an approval because they weren't willing to drive this far to give us home-based therapy sessions. Um, hello?! Last Friday, I was told that the services AT THE CLINIC would be approved. Now, they're telling me that's not an option. That it's a federal mandate that it has to be home-based. Well, wtf people? How come the assistant director didn't know that 5 days ago when she told me all was well and she would send the approval for CLINIC based services? When I got off the phone with her today, I cried. I cried because of frustration at the system. The "No Child Left Behind" act. Cause, honestly, my child is being left behind. My child sits and waits while they get their shit together. My child suffers because they don't have competent therapists through Part C to provide services. My child is left behind because he has autism. It's not fair. I cried because it's painfully clear to me already, at the ripe old age of 2 1/2, that nothing will ever be easy for him. I cried because I feel like I fight so hard to get him what he needs and deserves, as every other kid does, and it's all a bunch of paperwork-federal mandate-bullshit. I cried because this is such a critical time in his therapy/development and he can't get what he needs. I cried because I can't get a straight answer and I feel like I'm on a rollercoaster that won't stop. I cried because I know there are other children who are doing clinic-based therapies (Holden being one of them, for OT) and now they're saying MY child can't. I don't understand this system that's supposed to help our children. I don't understand the "No Child Left Behind" act. Especially when my child is being left in the dust.

Zoe

Zoe decided to join cross country this year. She goes on Wednesday and Friday mornings and she's earned her first "foot" charm she wears around her neck. She gets 1 for every 20 laps she runs. She's also going to start competing in cross country. I'm so proud of her, really. I couldn't ask for a better kid. She brought home ALL A's on her midterm progress report last week. She's joining the Science Club at school, and she's just the best to have around right now. Of course, she's also 8 years old and going through some things. She seems to be much more sensitive now - crying easily, etc. But I guess that's par for the course with 8 year old little girls. I tell her "I love you" more often, and give her big hugs. I think it helps.

sleep. what's that?

I was SO hoping Holden wouldn't have the "sleep disturbance" side effect from the MB12 shots. But, I don't think I'm going to get my wish. Last night, he was up from 2 - 4:30am, and the night before, he was up for about an hour. He doesn't get out of the bed, he just lays next to me and "talks" to himself, or touches me, or laughs, or plays. I honestly thought I was just going to have to get up this morning at 4:30am and start the day. But, just when I thought he wouldn't - he fell back to sleep and I had to wake him up at 8 this morning. He's a little crankier than usual today. And his eyes are red. He looks tired. He's napping now, finally, and I'm going to keep him up tonight until at least 9pm to see if that will help.

I refuse to stop the MB12 shots because I really feel they're making a difference with him. He's more "with us" now. He's laughing, and smiling, and looking at the camera when we take his picture. He's looking at US a lot more than he was just 2 weeks ago. He's a bit more stimmy still, and if I have to take away an object that he's stimming on, he gets really really upset - which is something he wasn't having too much trouble with before. Of course, the sleep thing is a big change for him. He's such a good sleeper, normally, so to have him waking up in the middle of the night and not going right back to sleep is a huge adjustment for us. But, I'm going to ride it out and hope that this side effect will diminish over the next month or 2. My fingers, and toes, are crossed!

worth the fight!

We had Holden's ISFP meeting with Early Steps last Monday. I brought up the fact that he was approved for 78 hours of ABA from April 2007 until October 2007. He only received 39 of those hours. Not because I didn't make sure he was here for appointments, but because it took TWO months to find a therapist to come out to our home. After having to replace 2 therapists, it left us with only having used 1/2 of what he was originally approved for.

I went into the meeting fully expecting to hear that I couldn't get those hours back. I had a behavior analyst (who is a dear friend / old college roommate) present with us, as well as Holden's speech therapist. His speech therapist is recommending an increase from 1 hour per week to 2 hours per week. We were told that in order for that to happen, be prepared to lose an hour somewhere else in his service plan. That normally, they will cut something to increase something else. That didn't go over well with me for obvious reasons.

2 days after our meeting, I got a call and was told that they wouldn't give those hours missed back to us. I was also told that since we were paying for ABA therapy out of pocket (we hired someone since I coudn't find a decent and reliable therapist through Part C), they couldn't approve "duplicate" services. That didn't go over well, either.

I called the program director and left a message. We played phone tag yesterday and I called her back today and spoke with her. After 30 minutes of conversation, I was able to get Holden's ABA hours INCREASED from 3 to 5 per week. Which means, in essence, that I DO get those hours back that he missed. I also fought to have them done in a clinic setting, instead of home, because the home therapy had been so unreliable over the past 6 months. I explained to her that he only has 6 months left in the system and I don't want to spend 4 of those looking for a competent therapist.

So. 5 hours of ABA at the clinic of my choice.

ROCK ON! Although, now I'm kicking myself for not asking for 10 hours.

check up!

Jackson had his 2 month checkup yesterday. He's 13 lbs. 8 ozs., and 23 1/2 inches. His head is "average".

Everything looks good!

labeling

Holden has had 2 MB12 shots, so I'm not sure if this is related to them or not. You never know when you're trying so many things - what works and what's just started "clicking" for him. Regardless, yesterday, he touched Jackson 3 times throughout the day and said "baby". Labeling is a big thing for kids working on speech and language. Especially when they have practically NONE.

So far, the side effects from the shots seem to be minimal. I'm expecting an increase in the next week or so - once he gets a good amount in his system. So far, the most obvious side effect for him has been mouthing objects. He plays with his tongue alot and puts everything in his mouth. Studies show that older children who can describe what they're feeling say that they begin to feel a tingling in their mouth (tongue). Apparently, Holden's feeling that, too. So far, sleep is okay (a little more restless than usual, but not enough to cause any major problems), and the hyperactivity is okay, too. And, although they say to expect an increase in stimming behaviors - Holden's has seemed to decrease the past 3 days. Knock on wood.

MB12 shots

Last night, we started the MB12 shots on Holden. Luckily, I was able to do it once he was asleep. I use EMLA cream to numb the area, mark it with a marker, and then I put him on the floor to sleep. About 30-45 minutes later, I gave him the shot and although he jerked a bit, he didn't wake up. So, yay! I have a little experience giving them to myself when I had to take insulin while pregnant with him. It wasn't as bad as I thought it would be.

Now we wait. He gets them every 3 days. I've heard, read, and researched the side effects, which seems to generally include: hyperactivity / more stimming, sleep disturbances (either better sleep, or worse - could go either way), and mouthing of objects. The consensus is that if you can tolerate the side effects, then hang in there and they'll begin to diminish within 1-2 months. Most parents continue the shots even with the side effects because the benefits are worth it. I'm hoping for the same.

Wish us luck.

Proud Mama!

Zoe's been back in school now for about 5 weeks. She's doing SO great. I knew she had it in her, and I was just waiting for her to really take off. So far, she's gotten ALL A's and B's. She keeps bringing home 100's, and I keep putting them up on the fridge. I'm so, so proud of her. She's such a great kid. He helps me more than I can say, and without her, I'd be lost!

So, Zoe, I'm SO proud of you baby!