real imitation - verbal

You know, looking back about a month or 2 ago, I think I was just really hopeful. Holden would occassionally imitate a sound, or would just come out with more sounds on his own. I thought to myself ... "he's improving, he's really improving!". But, today it just a whole other level. This morning in ABA, they told me he was more verbal than he's ever been. They were able to get a number of echoics from him. Not just 1 or 2, but like 4 or 5, which is huge. So, then he had speech and she hasn't seen him in over a week. She commented on how she couldn't believe the difference in just a week.

And it's true. It's crazy. Now, I can with-hold things like his drink (cup), his binkie (bee-bee), and anything else I want and ask him to say something and he does! For the most part anyway. For example:

me: "say mama"
Holden: "maaa-maaa"

me: "holden, say ba-ba"
Holden: "ba-ba"

me: "holden, say eeeeeat"
Holden: "eeeat!"

He's also doing a lot more gross motor imitation. Things he hasn't been shown before. When I ask him to show me his ear (they've been working on head and nose), it takes him a minute, but then he points to his ear.

I don't know what it is. As usual, it could be a combo of things. I honestly think that the chelation IV we did in January got the ball rolling. Then, I stated TMG about 2 weeks ago and I'm just now up to the therapeautic dose. I think that has got to be what's kickstarted his speech as much as it has.

To see improvements like this ... real progress. I can't tell you how good it feels. I'm crossing my fingers and toes and hairs that it will just continue.

"Cup"

Holden was sitting on my lap last night before bedtime. I had his sippy cup in my hand:

Holden: "cup"
Me: "Yes!!! CUP!!" I handed it to him.
Holden: "cup"

This morning while waiting for his therapist, he went to grab his sippy cup out of his bag and I stopped him. I looked at him with it in my hand and said "cup". He looked at me in the eye and said "cup", with a huge grin on his face. Of course, I gave him the cup!

So far, with the Baby Bumblebee video, he says:
"cup" (obviously)
"cow"
"car"
"ball"
"baaa" for bottle

starting TMG

I heard about DMG and TMG from a friend of mine. She said she's talked to a lot of other parents and kids have seen great improvements by starting one of these. TMG is DMG with an extra methyl group added. Or, that's how I understand it anyway. Some kids have seen good progress with speech and since speech is going very slow with Holden, I decided to ask Dr. David if we could try it. He emailed me back with the doseage info and we started 2 days ago. Apparently the therapuetic dose is around 1000-2000mgs per day. I bought the 175mgs. capsules to start him because we like to start things slow. I'm starting with 1/2 cap twice a day for 3 days. Then increasing by 1 capsule every 3 days, until we reach about 1000mgs. per day.

As with everything and autism, it's a crap shoot. What works for some kids doesn't work for others. What doesn't work for other kids works for yours. If I don't see any improvement at all on the TMG, I'll stop it. So far, he's up to taking:

-Vitamin C
-Calcium
-L-Carnosine
-NuThera Multivitamin
-Folinic Acid
-MB12 shots
-Nystatin
-Cod Liver Oil
-Licorice Root
-TMG
-Factor 4 probiotics
-Epsom salt baths every night
-Glutathione cream

And, almost all of those have to be given twice a day. So, the poor kid has nothing to eat or drink without having some sort of supplement in it. He's good though - doesn't bat an eye. He proably would if I didn't put anything in his juice! He's think it doesn't taste "right" by now. Ha.

As far as progress, he's doing well. He's babbling more. Trying so hard to talk. He has developed a sensitivity to loud sounds. He never had this before, so I don't know if it's a problem, or if it's a good thing in that he's becoming more aware of his surroundings, instead of being in his own little world. I can't run the blender or vaccum without a freak out/crying session. He calms down immediately when it's over though. And he doesn't cover his ears, he just cries. Like he's scared. He's even a little "iffy" when the microwave's on. I'm going to discuss with Dr. David next week when we meet with him to discuss chelation. Our appointment is on the 20th.

IV chelation challege results

We got Holden's results back yesterday from the IV chelation challenge we did a few weeks ago. The pretest (which is urine collected randomly) showed low levels of lead, and no mercury at all. There were other things, but lead and mercury are the ones I looked at. The post test (which is the urine collected for 8 hours after the IV chelation) showed lead levels "high", and showed mercury. The mercury wasn't "high", but it was there, and it was on the higher end of "within normal limits".

So, I'm not doctor, but I'm assuming this means on his own, he's not excreting toxins on his own - or at least not as much as he should or could. Whereas, the chelator has helped him excrete high levels of lead and also some mercury. Our appointment with Dr. David isn't until the 20th and we'll discuss ongoing chelation at that time. I'm hoping to start him on suppositories soon, and do 1 IV per month. Hopefully this will pan out and we'll start to see continued improvement.

I don't know if it's just me, or if it's reality, but since this 1 IV we did, I've seen improvements. Who knows, maybe it's just everything kicking in and has nothing to do with his body getting rid of some of the metals. Or maybe it does have something to do with it. In this game, you never know. It's always a guess. Whatever it is, I'll take it.

meow

In our continued effort to get Holden to imitate, something posessed me to make the "kitty-cat" sound the other day in the car. Boy did that get his attention. So, now, about 20 times a day, it goes something like this: "Holden, what does the kitty-cat say?". Pause. I say "meeeeeyoow". He looks at me, opens my mouth, watches me say it again, and then says "owwwwwww". There you have it, imitation.

We're also working on ducks (quack, quack, quack), and cows (moooooo). We'll see how long that takes.

interesting

http://www.cnn.com/2008/SHOWBIZ/TV/01/29/pediatricians.tvshow.ap/index.html.

repeating

Not everything, mind you. Not even close to everything. BUT, he IS repeating some things on TV. Mostly on the Baby Einstein DVDs, which I thought were really some type of devil-spawned DVD collection because they became such an obsession with him early on. But, if they're going to help him get some words out, then so be it. So far today, I've heard "kitchen", "chair", and "ball". And, while watching Baby DaVinci, he imitated sounds that the puppets were making. They were yawning, and he does it right after them. Everytime. So it's NOT a fluke.

As painful for me as that IV was 12 days ago - I'm ready for another!

what's going on???

I have no idea, but I'm not changing anything. I don't know if it was the IV chelation from last Thursday, or if things are just starting to "click" for Holden. He had a great week, doing things I haven't seen him do before. His ABA therapists all said he's making a lot more sounds. Not noises, but actual sounds. 3 days in a row, I caught him imitating things from TV. He was watching Barney once (I know, I know) and I caught him out of the corner of my eye doing something with his feet. I thought "oh, its just one of his dances he's doing". Then I looked at the TV and saw the kids dancing, doing exactly what Holden was doing. They started swinging their arms around and he watched and did the same thing...again. Just yesterday, he was watching a Baby Einstein video and there was a windup toy on there that would jump...walk, then jump again. Holden stood in front of the TV and jumpped every time the toy did. And smiled. I also heard some verbal imitation while he was watching a video, too.

Gross motor imitation is what we've been focusing on in ABA for him. It seems to facilitate verbal imitation. He's done GMI on occassion, but most of the time, its been prompted. This week, the times I caught him doing it, it was NOT prompted at all. Completely independent. I wish I would've had a video camera when he was doing it ... but I hadn't expected it, so I wasn't prepared.

Was it a fluke? Maybe. But I don't think so. Was it due to the little bit of detox that the one IV chelation would have accomplished? Possibly. Or, is it because he's started ABA thearpy 4 days a week this past week? Could be. Whatever the reason, I'm not stopping any of it.

challenge (provocation) test

Holden had his 1st challenge test today at the DAN doc. He was given 450mg of Glutathione and then he had 50mg of IV DMPS. It sucked. I had to hold him down. Normally, I'd make Dietrich do the holding down, but he is out of town for work. So, I had to do the dirty work. She had a hard time getting the vein in his arm, but FINALLY did enough to get the blood draw we needed. We're also checking his hormone and cortisol levels. And checking to see if the TD Glutathione is helping him, so we're checking those levels, too. Then the vein blew, so she couldn't administer the meds through that one. Had to remove the needle and then poke him in his hand. He screamed and cried and cried and I cried. He looked at me, crying, and yelled "MAMA!!!!" I thought my heart would break.

For 8 hours, we're collecting urine. I'll send it to the lab on Monday and we'll see what comes out.

So far, he's okay. Tired, but okay. We're all beat after today.

the "window"

Jenny McCarthy talks about The Window in her book about her son's autism. I've heard a lot of interviews, too, where she talks about The Window. How we have to pull our kids through this window.

I'm hesitant to type this, or think this, or admit this - for fear that it will go away. But, for the 1st time since Holden's diagnosis, I feel like The Window is at the very least ... opening. We have a long, long way to go in Holden's recovery process, but it feels like we're truly finally making some progress. And, progress that is notable. Not just us asking if it's a coincidence, or asking ourselves "did we really just see that?" and answering with a "nah, probably not".

Saturday, we were going somewhere - to run errands. Holden's been saying "bye bye" pretty consistently for the past few weeks. So, we told him we were going bye bye. I told him to go get his shoes so we could go. I kept talking to Dietrich and then realized as Holden walked around the corner and back into the room - that he had his shoes in his hands. Not only did he go get them. But he brought them to me to help him put them on. For most people, that's really nothing. Most parents can say to their kids "go get your shoes!" and they will go get their shoes. I've always wondered if Holden understands what I'm saying, yet he's unable to respond. Now I KNOW he understands most of what I say, because he IS responding. For a child with autism, that's huge.

So, yes, even if it's just a crack, The Window is FINALLY opening.

Paper!!

Holden loves paper. It's his "toy" of choice. He likes to shred paper, specifically. And hold it in his hand. Not just any paper, but paper towels or tissue. Regular paper you draw on just won't work. On New Years Eve, we spent the afternoon and night at a friend's house. Holden was really good. He crawled up in the chair with a few people and just hung out. He also played with his paper and when we were in the kitchen, we all heard him say "paper". Not just once, but 3 times. And it wasn't just me, but everyone else heard it too.

So, no more flukes. He's talking. It's not consistent, but he's talking. In the past week or so, we've heard "paper" (more, and again and again), "bath", "bubba" (for Jackson), "sissy" (for Zoe), "wawa" (for water). And it's great. He's not consistent, like I said, but we're hearing more sounds at least. And actual words. I really think his receptive language is improving the most lately though. While at our friends house on New Years Eve, he had a long sleeved shirt on and was sweating a little (damn Florida weather). I said to him "honey, do you want me to change your shirt and put on something cooler?" Not expecting him to actually SAY anything or DO anything. But he walked over to his bag, pulled out his other shirt, and laid it on top of the bag. And there's no way it could have been a coinidence. He's also listening to me more when I tell him to "come here". Or telling him to "get down". He's taken to crawling up on the trunk in the living room next to the TV. So, I think his receptive language is really really improving right now, which is awesome.

In other news: Zoe started her new school 3 days ago. She now has a total of 2 "really good friends", she says. I love that kid, she's so great. I was worried about her the 1st 2 days, but today she did so good and I know that we're over the worst of it. Thank God!

Tomorrow is such a full day that it's 9pm and I'm going to bed. We have ABA at the clinic from 9-11am, OT at the clinic from 1-1:30, walk to pick up Zoe at 2:30, and back for in-home ABA from 3:30-5:30. I'm tired just typing it out. Good night internet!

christmas

I haven't posted much over the past couple of weeks. The holidays have been crazy.

Zoe's out of school on break. We registered her at her new school last week. She'll start January 7th. She's not excited. I keep reminding her that it's only temporary - until we move to Dallas in June. Then she'll have to start another new school. Hopefully she'll be there for a while.

Jackson's growing like a weed. Had his 4 month checkup a week or so ago. I think he's about 14 lbs. now. Everything seems to be doing well with him. He's meeting the developmental milestones he's supposed to meet. So, we just keep watching him. Probably too much.

Holden's doing well. I think the clinic based therapy is helping him a lot more than I thought it would. He's responding well to the therapists and he's learning a lot. Biomedically, I'm pretty sure we have the MB12 shots to thank for his recent improvements. I've seen more with those, than with anything else he's started. If I don't write these down here, I'll forget. So:

12/22/07 - We had a family friend over. She's a Behavior Analyst. Holden was making great eye contact with her. He eventually came to get all of us, led us to the couch, sat us down, and then ran off laughing and smiling at all of us. If we moved, he would continue to do the same thing. And look at us for smiles and laughs. He initiated a "game", and as my friend said ... not only was it a "game", but a SOCIAL game where he didn't need a tangible reinforcer. Just us laughing and smiling with him seemed to be enough incentive to continue. He's never done this kind of thing before, so it was so so great to see.

12/25/07 - Christmas morning was good. He opened a few presents himself, and even was interested in some of the toys. Of course, after a while, he found the paper and would shread it, drop it, lather rinse repeat. But, all in all, he did great. We went to Disney (Magic Kingdom) on Christmas day. We rode: Aladin's Magic Carpet, Pirrates of the Carribean, The Haunted Mansion, Jungle Cruise, Peter Pan, and It's a Small World. He LOVED them all. Laughed the whole time and was really really focused. I didn't know how he would react - but it was so worth every penny it costs to get us there. He had such a good time. So did Zoe - riding Space Mountain for the 1st time (TWICE)! I'm so glad we went.

12/28/07 - ABA at the clinic. His therapist said he did great. Actually got a few verbal imitations out of him. This is big because we haven't been able to get him to this step yet, although it's been a goal for some time. She also told us that we've been chosen to receive part of a grant for hours at the clinic. Hopefully, will be 4 more per week, making his total there to 8 per week until Part C runs out on his birthday (April 10th). This would be so good for him, so my fingers and toes are crossed that we'll hear more about that soon.

As down and depressed as I had been feeling just before the holidays, I feel a little better now that it's all over. Holden did great. He enjoyed the lights, tree, presents, Disney, and Zoe also had the best time. Seeing your kids enjoy the holidays is just the best thing ever. I also started taking Prozac about a week and a half ago. I'm not really sure if it's making a difference. I'd like to think so, but I don't know if it's just the "high" from the holidays and seeing Holden have such a good time. Time will tell, I suppose.

Happy Holidays, everyone!

damn

When we moved to this house (renting) from the last house (also, renting), we moved into a different county. Still, only about a mile from the last place though. We decided to keep Zoe in the school she was in, for a few reasons. She was going through a lot at the time with dealing with Holden's diagnosis and how it changed our family. She already had anxiety about the FCAT which is a standardized test that all 3rd graders MUST pass. Yeah, I know, no pressure on an 8 year old, right? Seeing as they start telling kids about this test in the 1st grade - doesn't help to scare the ba-jesus out of them. And, we are planning on moving after the school year to Texas, so I didn't want to put her in a new school for a year, and then have to put her in another new school for next year. So, yeah, she's been going to the same school and doing great. Honor roll! She brought home a letter from the school 2 days ago, telling us that we had to provide proof of residency in the county for her to continue there. Obviously, I don't have that, so she has to go to a new school. I hate it. She's being such a trooper about it, but I know it bothers her. And it bothers us and we now realize that we should've just done the right thing to begin with - either found another house to rent in our old neighborhood, or enrolled her in the right school before the year began. But, we didn't. Live and learn, right? I'm just so sorry for her. She loves her teacher, is doing so well, and doesn't want to leave her friends. I know she'll be fine, but still. Breaks my heart.

I don't say enough about her on this blog. She's such a wonderful kid, really. I love her to pieces. And the boys couldn't ask for a better big sis!

mouthing

Holden was mouthing EVERYTHING yesterday. I sat with him for 30 minutes on the couch, just trying to keep his fingers out of his mouth. Pencils, toys, his shirt, paper, whatever he could find - was in his mouth. He had OT yesterday, thankfully, and they kept him for about 15 minutes longer than his normal 30 minute session. She gave him a vibrating teething toy and he used that most of the session and was still able to focus on what she wanted him to do.

Speaking of which. She had counting bears and the corresponding bowls. There are 4 colors - blue, red, yellow and green. She put red and green bears on the desk - with the red and green bowls. Using hand over hand, she showed him where the red bears went...in the red bowl. Then he picked out all of the red ones and put them in the right bowl. Then she did the same with blue and yellow. He picked out all of the blue and put them in the blue bowl. I thought maybe it was a coincidence, but she said it wasn't. He moved the other one's out of the way just to get to the color he was working on. Now, if he could just talk and tell us things!

Today he had ABA at the clinic for 2 hours. He's doing well there and I've decided to only sit in for the first 1/2 hour or so of the session. The remainder of the time, I sit in the waiting room. He does okay without me in there. His therapist said he was saying "mama" when I wasn't there. When it was time for him to come out, I went to the door and looked through the glass. He saw me and started running and smiling. Now that we're home he's very stimmy, but I think that's just because of the intense therapy he had this morning. He'll "even" off in a little while, I think.

ZOE!

My little girl made honor roll!!! 3 A's and 2 B's on her report card yesterday. I'm so, so, so, SO proud of her. She's really worked hard for it, and with everything going on in her life right now, she's really kicking ass. God I love her.

shock

Last weekend Dietrich was clipping Jackson's nails. I was on the couch, and Holden was on the floor ... stimming on a book. Jackson cried, because, well, he didn't like being held tightly. I noticed that Holden would look at him. He would look everytime Jackson whined or cried. Then, Dietrich clipped Jackson's finger a little and he let out a WAIL. Holden got up, walked over and touched his foot. Looked at him. And then walked away. Jackson kept crying and Holden went back to him. He touched his arm and looked at him, and then leaned in and gave him a kiss. I was in TOTAL SHOCK. Because, see, this means that he understands that Jackson was in pain. He "gets it". He knows that he was upset and he was trying to make him feel better. He had empathy for his brother. I cried.

"ball"

"ball". It's the most consistent word I've heard from Holden ... since, well, he was 15 months or so. Everytime he sees something round, he says "ball!". Putting up the Christmas tree yesterday, ball ornaments - he would reach for them and say "ball!". Walking through the craft store on Saturday, we walked by styrofoam balls and he said "ball!".

I didn't think I could ever be excited to hear my kid say ball. But, I'm SO fricken excited to hear him say ball!!

ABA

FINALLY. We have an awesome ABA therapist. Last Wednesday thru Saturday, Holden had 6 hours of ABA with the Director of the clinic he's going to. It was great. He responded SO well to her. And she's very comfortable with him, and it's just so good to see him responding to other people the way he does with her. We worked on "stop" and "go". Took walks, and within about an hour, he was able to sign "go" unprompted. We rolled a ball to Zoe. And just let him play outside. He loved it.

We've been at this therapy thing for 8 months and FINALLY have a good team of people working with him. I'm hopeful.

a better day...

Today was a better day. Things are looking up and I hope I'm coming out of this funk I've been in for a week or so. Sometimes I just need to feel the way I want to feel for a few days and then I can get back to the task at hand, which is to help Holden, be a mom to all of my kids, and a wife to my husband. I feel better.

Tomorrow looks a little like this: 9-11am: ABA for the 1st time at Quest Kids, 11:30-12noon: Speech at home, 1-1:30pm: OT at the clinic. Busy, busy morning. We FINALLY are starting the ABA through Early Steps, thank goodness. It's taken long enough, seeing as he's been approved since October 19th.

We went to a friend's house today to help celebrate another one of my friends' birthday. The friend's house we went to - she's an OT, and also has a son who WAS on the spectrum a few years ago. He's since tested "typical". Anyway, this was the 1st time she's met Holden. I was a bit nervous. Thinking he would just rub his hands on the walls, or find something to stim on, being in an unfamiliar environment. But, guess what? He didn't. He was SO good. He watched TV, walked around, played with their toys. He stimmed for about 20 minutes out of the entire 3 hours we were there. And even then, he was able to be interrupted without a tantrum. Nice. My friend said to me: If I didn't know he was autistic, just seeing him, I would have never guessed. I can't tell you how good that made me feel...

Last evening, the boys next door were playing outside. Zoe was outside too. I took Holden out, and the boys were kicking soccer balls and laughing. Holden was stimming a bit - walking back and forth, back and forth - the same path from our yard to theirs. Then, he saw the boys playing ball, and got a huge smile on his face, ran over, and laughed while he ran through them. It was obvious to me that he WANTED to play, he just didn't know how. I loved the fact that he even noticed.

And, I have to talk about Zoe for a second. She had such fun today with my friend's daughter - who's the same age as her. They love each other. They put on a fashion show for us and it was SO wonderful. I love that kid, I really really really do.

defeated

I feel defeated. I do. It sucks. The reality is that I will never give up this fight to help my son. BUT. And that's a big BUT. We were scheduled to have a new ABA therapist come over tonight. 1st appointment. She didn't show. WTF people? I want to scream and cry and punch someone.

THIS is the reason I'm even more determined to become a Behavior Analyst. I'm starting classes in January. I know what it feels like to get shit service for your kid who sits and waits for what he deserves. I told Dietrich tonight - PLEASE remind me when I have my own company what it feels like to not call a family, or not show up for an appointment. Remind me what it feels like when you feel defeated. Because right now, I feel defeated. And it sucks ass.