4.24.2009

daily data sheet from school today

"Holden did awesome listening today and played with his friend from class on the playground, saying "ready, set, go!" on the slide."

some updates from school

I received a great "daily sheet" home yesterday. It simply said "Holden did very well working at the table today and he was perfect on his manding."

That may not *sound* like much to most people, but it's a lot for us. Manding is asking for the things that you want, making requests. Basically, it's teaching him that by talking or signing for things he wants ... he can get them.

So, I emailed to ask for a little more explanation and here's her response:
---Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today. We still pair sign/vocal although his approximations are getting better. The items he is manding for unprompted are cereal (dry cereal and his cereal bar), cookie, cake (muffin), pretzel (struggles both with sign and vocal), juice, light, candy, chip, chicken and bubbles. He mands for other items intermittently and needs some prompting to ask for them. They are fish (fish toy), circle (poker chips to put in a container), face (happy face toy), boat (wooden Noah’s ark), and other toys. I am starting to have him mand for other things in his lunch such as his “meat” (lunch meat) and “sandwich”. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).

I emailed her back and asked how many words or approximations she thinks he has at this point. This is her response to me:
---I would have to look at his book, but unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say , but his Kaufman objectives is around 8 and they are getting better too. He does interrupt during speech and we have a procedure for it, but he loves saying his words and gets in a hurry. For example, we will present the word "eat" and as were saying it, he interrupts and starts to say it too. We have to say "wait", put up a clipboard, count
to 5 and re-present the word. It works very well. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.

Let me just pull out the high points of that email conversation, as far as I'm concerned.

1. Manding is requesting items and when Holden works, he gets to request some of his items that he likes. He didn’t need prompting on any of them today.

2. Unprompted mands are a good thing and will lead to his manding for things that are not present, but he is motivated for (the “MO”).

3. unprompted items is around 10, prompted adds at least 10 more and echoic (repeating spoken words) too many to say.
(I think his unprompted is higher, so I'm going to create a notebook to keep track of everything he says that's unprompted).

4. he loves saying his words

5. He is noticing things more (pictures on the wall, people talking to him) and the stimmy walk has vanished.


The update couldn't get much better in my eyes.

4.22.2009

4.16.2009

YES!!

So, I sent this to a friend of mine as an update on our DAN! appointment today. I realized I needed to add it here, too.

The appointment went well. I realized a LOT today. Remember a few weeks back (3/26, to be exact), when I sent you that message and I was just so down about things? That Holden was stimming nonstop and staying up late and regressing and I just couldn't figure out what was going on with him? What I was doing wrong, etc? Well. I have a friend in Orlando who's son went to the same ABA clinic as Holden. We became friends and have kept in touch and she told me a while back that her son would have these episodes of "regression", and then once it was over, he would always make these huge leaps in progress. She realized they were "healing regressions". That during chelation, his body was dumping metals and toxins into his blood stream and causing him to feel horrible (thus, the stimmy, not sleeping, irritability, etc...). And once he was able to rid his body of those loose metals/toxins, he would come out of it and make those great leaps and bounds in development. I understood what she was saying ... but didn't really understand, ya know? So, it hit me today. This is what happened with Holden. It has to be. It was HORRIBLE this last time around (the week of 3/22-3/27). I felt hopeless, helpless. But, in the past 2 weeks or so, I've seen some major improvements. Major. And, in the last 3-4 days, I've just had this feeling. This "gut" feeling, if you want to call it that. The feeling is ... I just KNOW he's going to be okay. I know it. I feel it. I sense it. I see him, now. He looks at me and I can see him, and he smiles and I know that he's coming back. I told my husband 2 nights ago that I just know in my heart that he is going to be okay. That we are going to get him back and he's going to be OKAY.

So. We saw Dr. Rao today and he asked me how he was doing. I said "I'm cautiously optimistic because he's been doing great over the past few weeks." Holden was in the room, sitting on the floor, talking to himself. He looked up at Dr. Rao and Dr. Rao looked at him, and then Holden said "Hi". Then he started talking to himself. Dr. Rao pointed to him and said to me "THAT is an excellent sign." I said ... "what do you mean, what's an excellent sign?" And she said that the way he was talking to himself ... using consonant/vowel combinations, and singing to himself - that it was an excellent sign. He said that in the thousands of children he's seen, he's seen that many times in children who RECOVER. He said that the progress he's making and what I've described and what he sees himself ... that he feels he's beginning to finally heal the inflamation in his brain and beginning the healing/recovery process. He said that fortunately, there are those children who do begin to heal/recover and from his experience, they do not go backwards. They continue to progress over time. And, unfortunately, there are those kids who just never hit that point of beginning to heal/recover.

He said .... recovery. recover. heal.

I could've kissed the man!!!! And almost did.

We had a blood draw to check his liver function (because he's on daily anti-fungal medication, which can be unusually harsh on the liver), and we did an IV 'push' of glutathione - which is a natural anti-oxidant. Kids with autism have very low levels of glutathione.

Holden didn't cry once. Didn't scream, or fight me. He sat in my lap and said "no", but that was it. They sprayed him with a numbing spray and he just watched a movie and was the bravest little boy.

We're continuing the chelation every week. It's working. Something's working. Maybe it's the chelation. Maybe it's the ABA therapy at school. Maybe it's the many people praying for him. Maybe it's a combination of all of it? Either way, I'm not willing to stop any of it.

I know there will be days. I know he will regress. It happens. It needs to happen to heal his body further. And, I know there will be days when I'll send you "woe is me" messages and need a little extra support from anyone I can get it from. But, right now? Today? I'm going to just take it all in and I'm just soooo incredibly thankful that a doctor AGREES with me. He sees it, too. He's given me more hope and motivated me even more.

A doctor is giving me hope. Wow. What a great idea!!!

4.14.2009

playing

I've noticed over the past week that Holden's been playing more appropriately. He and Jackson have been running around the house, chasing each other. For ex, this morning while I'm running around like a crazy person, trying to get 3 kids dressed and 2 of them off to school...I look over and the boys are on the couch. Not sitting, but standing. So I tell Jackson to sit down and he does. Then Holden looks at him and smiles and sits. Then stands, looks at Jackson and Jackson grins and stands. Up and down and up and down. But, the point is that he was LOOKING at Jackson. Interacting with him. Yesterday after school, I noticed Holden chasing Bella (our dog) around and laughing. Then, Bella was on the couch next to me (wanting protection from me, obviously) and Holden grabbed her and tried to "hug" her. Course, Bella's afraid she'll get broken, so she got away from him. I think we need a dog that will play back! 2 nights ago, I put a blanket on the floor in our room, which is where Holden typically falls asleep at night, with one of the music channels on TV. Jackson was in there with him and the next thing I know, I hear Jackson crying. So, I go in to investigate and Holden's laying on top of him...smiling and laughing. Poor Jackson was crying! I realized that Holden was just playing with him. Dietrich lays across Holden sometimes because he loves deep pressure. I guess Holden thought Jackson should learn to love it too. Ha. I'm scared to be so optimistic, because I know there will be more regression. It comes with the journey. But right now, I'm just enjoying him being a little boy and playing with his brother! And laughing! Here's a video of some laughing and interacting:
video

4.10.2009

Four

Holden turned 4 today. Wow, I still can't believe it. 2 years ago, this week, we received the diagnosis of PDD-NOS (autism). I remember it like yesterday. I wrote a whole post about remembering that week, and the weeks prior - when we realized what was going on with him. But, I decided to delete it. I won't focus on the past anymore, but rather look forward to the future. So, this is going to be a post about positive things! About how far he's come and how far he WILL go.

I was thinking this morning, after I gave Holden a cupcake (GFCF, of course) for breakfast that I honestly could not remember his 3rd birthday. I know, I know, it's horrible. But, it's true. I remember thinking when he turned 3 that I had no idea who my son was. I didn't know his likes, or dislikes. I don't know if I even bought him a gift - although, I suspect I did. I just can't remember what it was, or if he liked it. He was so incredibly lost just 1 year ago. I think I spent most of his 3rd birthday crying, to be honest.

About a week leading up to this birthday, I started having a bit of panic. I didn't want another birthday to go by and him not understand. Or, for me not to know what to do to make his day "special". I decided to just go with it and I planned a little birthday celebration with his class at school and his teacher was all for it. So, yesterday I took in cupcakes and a few goodies for his classmates (who are also all autistic) and Jackson and I went in to celebrate with him at school. His teachers were there and also his speech therapist. I remember she said to me "everyone loves Holden here - he's such a special little boy!" And I honestly felt like she meant it. Holden LOVED everyone singing Happy Birthday to him. He even tried to sing along, and got the biggest smile when we all clapped afterwards. It was almost as if he realized ... HEY, this is for me!! Afterwards, they had planned an egg hunt and I thought to myself ... this should be fun. I'm sure he won't "get it". I know, optimistic of me, huh?! But, we went outside and I showed him an egg on the ground and told him to pick it up and put it in his bag. He did! And then, he looked around and saw more. He picked up the rest all on his own and had so much fun doing it. I was so proud of him.

This morning, he had cupcakes for breakfast. He got a tricycle-type bike to ride and loved it. I think he really loved the noises, lights, and all the buttons, but still - he liked it! He and Jackson PLAYED this morning, too. They were chasing each other and although it only lasted for about 5 minutes ... they played. Together. And they were both laughing. Together. We then took him to lunch at a Gluten-free restaurant. He actually ate the food, which surprised me. He's a bit picky, or so I thought. But, apparently I was wrong, he tried a few things and seemed to not have any trouble with it! Then, we all had yet another cupcake to celebrate his day.

Then, off to the Wiggly Play Center. I was a little concerned about taking him there, too. Would the other kids freak him out? Would the noise bother him? Would he just do "stimmy walks" around the place and touch the walls? The last time we took him to a place like this, he had absolutely NO interest. That was about 8 months ago. Well, I'm happy to report he loved it! He had a blast (and so did Jackson). He didn't play with other kids, but then again, none of the other kids were playing with other kids either! He went through all the tunnels, bouncy houses, and slides. We bought him a Wiggles hat and shirt and left for home.

He was beat after today. He's now in bed, sleeping like a baby...but, a baby who just turned 4. Some words and phrases I heard from him today:

"Jackson, NO!"
"Happy birthday"
"Wiggles"
"Cake!"
"More cards" (for his language builder cards)
"pee pee in the potty"
"I love you"

There were probably more, and I just realized while typing this that I don't know if I can even keep count of his words and phrases anymore! Which is soooo exciting. This time last year, I didn't know if he would ever say a word, to be honest. Although, most people can't understand what he's saying ... I can. And I know he's talking and I know he's trying to say more. I also know what he likes. He loves the Wiggles, Little Einsteins, his language builder cards, balls, slides, his new trike, beads, puzzles, being outside, hugs, kisses, tickles...and the list goes on. I know my kid. I know who he is now, and although it's taken 2 long years to get to this point, it's so worth it now.

He has come so far in the past year and I am so very proud of him. I know he works incredibly hard, for such simple things that come easily to other 4 year olds. I also know that the next year will bring many more UPs...and also a few downs. But, I am committed to his recovery and I will not let him down. We're healing his body, one day at at time.

So, happy birthday beautiful boy! We love you more than words can say. A few pictures from his special (2) days!











4.08.2009

huh.

When I picked up Holden from school yesterday, I assumed I was right. The other shoe DID drop. They said he had a few tantrums, which isn't typical of him. He screamed when redirected and not allowed to line up a few toys. So, I was prepared when I got home, and sure enough...when I took away his language builder cards (because he wasn't looking at the pictures or labeling them, they were all over the floor) and offered him a book/magazine instead, he freaked. Screamed and started scooting around on the floor - which is what he does when he's mad, apparently. It lasted for a good 10 minutes or so, then he calmed down and ate dinner. He was in bed at the regular time, for him, around 7pm.

The one thing though that hasn't stopped is his spontaneous language. He had a few behavior issues yesterday - which like I said - is not normal for him. But, he maintained the "more verbal" part. When Jackson does something he's not supposed to do...Holden will now say "Jackson, No!". It's appropriate, and really is when Jackson's doing something he shouldn't be doing.

One thing I did notice yesterday. (Those of you who wish to NOT discuss poop should log off now). I could tell yesterday that he had to go poop. He will do a "poo dance", as I call it. I could tell he needed to go and he went to the bathroom a few times, but didn't go. This morning, he FINALLY went. And seemed a lot happier afterwards (aren't we all?!). So, makes me wonder if yesterday, he was in pain and just frustrated easily because of the discomfort? I've decided to monitor his progress a little more closely to see if after a few days of not going - what his behavior is like. Could be something. Could be nothing. As usual, you never know.

4.07.2009

waiting for the other shoe to drop

We typically chelate on Friday nights. We're supposed to be using a combo of DMSA and EDTA (2 suppositories - 20-30 minutes apart), but lately, I've only been able to get 1 in and disolved well enough that I know his body has absorbed it. We're going to look into changing his chelation schedule when I see his doctor on the 16th. I'd like to begin chelating twice a week, instead of just once.

I've noticed the past 2 weeks (we've been chelating going on 4 weeks now), that when we do it on Friday ... his Saturday's aren't so great. He acts as though he doesn't feel well all day Saturday and is somewhat "out of it". I'm assuming his little body is just not feeling well, seeing as it's detoxing. BUT, then, by Sunday - the change is really just short of amazing. Sunday's he's happy, smiling, enteracting, great eye contact, etc. etc. etc. He tries to verbalize more, too. Sunday, we went kite flying and he absolutely loved it. There was a ravine close by in the field and he would go to the edge of it and when I called him, he would stop dead in his tracks - look at me - and come back. He never once tried to run away from me, and listened when I told him to "come here" every.single.time.

so happy!


he LOVED the ladybug we found.




When we got home, I told him, completely out of habit, to "take off your jacket". I turned and he immediately started to unzip his jacket and take it off. He typically doesn't follow simple commands like this, but Sunday - it was as if he understood everything I said and followed the directions I gave him. This week, the "good" has lasted up to now. Yesterday (Monday) morning, he went into the other room where Zoe was talking to me and said ... "Hi Wo-wie!", he can't quite say "Zoe" yet. Needless to say, Zoe was as surprised as I was. He's said that before, but only after prompting. This was full-on-spontaneous-language. Then this morning, while I was getting him dressed, he kept hugging me and laughing and playing and looking RIGHT at me for more than the typical 1.5 seconds or so. He was just so happy and animated. ANIMATED. My kid. The one with autism.

So, now, I'm just waiting for the other shoe to drop. I know that he will level off today or tomorrow, if history is a predictor of the future. Then we start all over on Friday with chelation and hopefully see the gains again by Sunday. I can't help but feel that if we could keep his body detoxing and get him "cleaned out" more than just once a week, we may be able to keep the "good" for longer than Mon-Tues or Wed. That's the goal of our doctor's appointment on the 16th - to figure out how to keep him on a high, most of the time.

Note: So far, yeast seems to be under control.

oprah

I was watching yesterday's Oprah last night (thank god for DVR) and it was a show on motherhood and how difficult it is. Mother's were discussing all of the things no one ever told them about being a mom. How they are always exhausted, have no time for themselves, and just how hard the "job" of motherhood really is.

I listened to the moms on the show, and I couldn't agree with them more. I think being a mom is the hardest thing I do and have ever done. I also think that having a child with autism increases that by 100%. Not only am I a mom, but I'm also my son's advocate, therapist, teacher, and nurse.

It made me wonder. If Oprah had a studio full of mom's with children on the spectrum, what would that have been like?! Because, although motherhood is incredibly tough, it's also the most rewarding experience of my life.

4.02.2009

World Autism Awareness Day (WAAD)

Today is World Autism Awareness Day. It's really unlike every other day for our family, as we're reminded of Autism...every. single. day. But today, I don't feel as alone because I know there are so many families uniting together to bring more awareness to Autism. I have made a choice to devote myself to the cause, to raising awareness, to helping people understand the disorder, to finding a cure. I pray that my son will be one of the lucky ones who recover from Autism. If he does, I know that I will never give up fighting for other children and families who suffer. If he doesn't ... Well, I won't say "if he doesn't", because I will never give up on his recovery.

Support WAAD. If you know someone who has a child with Autism, or is affected themselves - show compassion today.