My World of Autism and More

real play! (cont.)

2009-07-02T21:54:00.002-04:00

OHHHH, forgot to mention something in my last post. During bathtime, Jackson loves pouring water on Holden's head. Course, Holden doesn't necessary love when he does that, but anyway. The point. The last couple of nights I noticed Holden looking over at Jackson when he pours water on his head ... then taking the cup and doing the same thing to Jackson! So, I'm going to consider this "real play", too. He's interacting ... back and forth.

real play!

2009-07-02T21:34:00.002-04:00

And, I mean ... full-on giggling, laughing, hiding, more laughing ... PLAYING with Jackson this week. I was going to blog about it on Monday, but wondered if it were just a fluke. Sometimes you think they really get something and then the next day you wonder if you were in fact dreaming. Not this time! At least I don't think so anyway.

Holden started bringing a blanket out of the bedroom and hiding under it. He would take the cover off and say ... "there he is!". Jackson wanted in on the action so he started tackling Holden while he was under the blanket. I expected a scream from Holden, which is his normal reaction to Jackson messing with him. But, instead, he started laughing. Cutest thing. Then he would take the cover off and say ... "there he is!" and just laugh and laugh (while looking at Jackson the whole time). He's done this everyday since Monday. So, no fluke. He's playing, appropriately, with his brother.

Also, today in the car Jackson was crying. I noticed Holden look over at him with a look of curiosity. Once Jackson stopped crying, Holden started giggling. Then they were both giggling.

It's like they're FINALLY becoming "partners in crime".

I love it.

summertime

2009-06-28T08:29:00.003-04:00

I haven't had much time to blog since school let out for the summer. 3 kids keep you very busy, to say the least.

I don't really have a lot to report with Holden. He's doing well, although now it's very slow, steady gains. As compared to big "wows" we were seeing. I'm not sure which is better honestly. The big "wows" tend to take you aback a little more, just because maybe you aren't expecting it. But, the slow, steady gains make me believe that he's just continuing to learn and progress on more of a regular basis. Make sense? Well, if not, it is early this morning and I have had only 1 cup of coffee so far.

He has been attending the ESY summer program through the public school. He goes M-Th, from 8-noon. They aren't teaching any new skills. Only focusing on maintenence and making sure he's retaining all he learned and mastered throughout last school year. Well, I decided the last couple of days of school to call our insurance company to find out if it covered any ABA therapy at all because I wanted to supplement the summer school program with additional therapy. And let me tell you, it has turned into a major shocker! Seems that our insurance falls under "Texas mandates", instead of federal mandates. Which, apparently, is GREAT. Over the past few weeks, I've found out that Holden will be able to attend a wonderful ABA clinic FIVE days per week, from 9am - 4pm!! And, our cost? We pay a one-time $50.00 copay. Insurance picks up the remaining amount. Crazy, I know. I wasn't expecting it, at all. So, I'm going to remove him from the public school summer ESY and put him into the clinic fulltime. I'll re-evaluate in a month and a half to see how he's doing there before I decide if I'm going to keep him in the clinic or put him back in his classroom. I love his school and it's a great program, but, we only have 2 years until he HAS to be enrolled in school in the state of Texas and I'm very hopeful that if we're aggressive enough, he can enter in a regular/mainstream classroom with the help of an Aide. So, I will keep you posted on how he does at the clinic. His start date is July 8th.

We are still chelating. Once a week, using EDTA + DMSA. Last week, I only did the EDTA because he seemed restless and didn't want to push it. He ended up sick for 2 days after chelation night. Not sure if it was because of chelation or just a virus he picked up somewhere. I've heard of some kids getting sick after chelation because of the redistribution of the toxins. I gave him charcoal last week, twice, and it seemed to help a little.

Well, looks like the little chickens are up for the day, so more later!

Here's a few pictures of our summer "adventures" so far (in HOT AS HECK TEXAS)

fork

2009-06-10T11:58:00.002-04:00

Ok, so, for any parent of a typical 4 year old, this will no doubt ... NOT be exciting. But, for those of us dealing with a child with autism. VERY exciting.

This morning, Holden was eating his scrambled eggs. When he was done eating, he did his usual routine of putting his plate in the kitchen. (Learned that at school). He left his fork on the table. So when he came back into the room, I pointed to the fork and said to him "Holden, can you put your fork away, too?" and he looked at it, said "OH!", ran over to the table, grabbed his fork, and put it in the kitchen. He came back all "smiley" and sat next to me.

Why is this exciting? Well, 1. he actually looked at where I was pointing. 2. I only gave the direction ONE time. And, 3. He followed the direction!

End of School Update

2009-06-04T14:48:00.001-04:00

So, little Miss Zoe got ALL A's for her final grades. ALL A's. Very proud of her!!!

Holden's update is as follows: (his is different than just grades, so I have to update all of his "objectives" individually)

GOAL: Holden will master the skills needed to effectively communicate.
Comments: Holden has mastered 18 motor imitative responses this 9 weeks. He has also mastered 5 new mands (signs with vocal approimations) and acquired at least 5 to learn. We will continue to target new mands next school year and he will work to maintain his mastered ones in ESY (summer school). We have tested 15 tacts (signs wtih vocal approximations) and will target new ones next school year. He can echo an approximation to at least 15 words and has mastered 3 this nine weeks. We will add new echoics next school year. Good job!

GOAL: Holden will improve fine and/or gross motor skills
Comments: Holden has mastered these objectives for this school year, we will target new objectives next school year. Great work, Holden!

GOAL: Holden will improve cognitive skills
Comments: Holden has mastered 11 visual performance skills this 9 weeks and has become a master at basic puzzles. He has also mastered 6 new receptive language skills this 9 weeks! Holden works very well at the table and is okay if reinforcement is delayed after completing a skill. Great job, Holden!

GOAL: Holden will improve personal-social skills
Comments: Holden attends the entire circle time, transitions well and participates in singing and doing the actions. He makes occasional eye contact and will attempt to copy new motions the teachers are doing. Holden will play nicely with the other students, occasionally taking something they have if he likes it. He takes turns nicely and is not disturbed by the other children. Great playing & singing, Holden!

GOAL: Holden will improve daily living skills
Comments: Holden is a pro at the backpack routine, we no longer prompt, as he seems to be prompt dependent when we do so. He occasionally needs physical guidance for reaching the basket to get his folder out, but can do the routine independently. Good job!

GOAL: Holden will increase positive behaviors and/or decrease negative behaviors
Comments: Holden's tantrums have decreased substantially this school year. He has also dropped his stimmy circles, only engaging in them on occasion. He will still get mad when told "no" to lining up toys, running off the playground, or sitting inappropriately. This is all age-appropriate and we expect to see continued progress next school year. Way to go, Holden!

Last day (almost) of school

2009-06-04T10:42:00.002-04:00

Just a few pictures from Holden's last day of school party yesterday. Today's actually the last day ... but the party was yesterday. He's done so good - I almost can't wait for school to start again so that he can continue to learn more!

enhansa update

2009-06-02T12:02:00.001-04:00

i hesitate to write this ... cause, i'm sure i'll jinx something. but, holden seems to be finally adjusting well to the enhansa. i still think he may have phenol issues; but so far, nightly epsom salt / baking soda baths seem to be helping (a lot). i was already doing epsom salt baths, but not religiously. now, i'm making sure that EVERY night, he has at least 2 cups of salts in his bath and that he sits and plays for at least 15 minutes. i haven't seen any red cheeks since last week, and he's definitely talking more. i have no idea if that has to do with the enhansa or not. he's doing a lot of scripting and singing songs from his movies/tv shows. which, hey, if it's language of any kind, i'll take it right now! we'll work out the details later! he's also showing that he understands (at least somewhat) certain emotions. jackson was crying this morning and i said "holden, tell jackson "don't cry"") and he said ... "jackson, don't cry" in a really sad voice. like he knew that crying was sad. he's also been pretending to talk on the phone. he'll walk in the other room and make the sound of a phone ringing and then put his hand up to his ear and say "hello"....then...."have a good day"....and then...."bye". i tried having a pretend phone conversation with him, but haven't gotten that far yet.

so who knows. i may increase his dose by 75mgs and see if i see anything different.

enhansa

2009-05-21T19:21:00.004-04:00

I decided to start the Enhansa last Saturday, even though we have family in from out of town. I started with a 150mg. dose...75mgs in the a.m. and 75mgs in the p.m. The stuff (powder) is yellow/orange and just smells nasty, so it took me some trials to find a way to get it into him. I put it in his juice for the first 2-3 days and that didn't work. He probably didn't even get 1/2 the dose on those days because I just couldn't get him to drink his juice. So, I decided to try it in some organic, all natural, maple syrup. I mix it in with about a teaspoon full and then give it to him. He seems to tolerate it much better that way. I tried it in apple sauce and he gagged every single time. So, instead of torturing the poor kid - I tried the maple syrup. For now, that seems to be the way to go.

Negatives - I'm pretty sure I've seen some die-off the past few days. His stimming has increased and his eye contact has decreased. I've been fighting the die-off with upping his dose of Biotin everyday, and even giving activated charcoal on the second day. It seemed to help.

Positives - The negatives have decreased as of today. We are now on day 6 (although, the first 2 days were probably useless because he wasn't taking the juice). The eye contact is back, and he's much easier distracted from the stimming. He's sleeping better, too. Yesterday when I picked him up from school, his teacher told me he had spontaneously labeled some cards they were cutting out. She said one of his teachers was sitting at a table and cutting out picture cards and he walked over and started labeling them (correctly). Now, he does that at home occassionally, but apparently hasn't done it yet at school. She said that typically means he won't have to stay in the communications class and will eventually move out and into the support center, before heading to a regular class. Of course she's only speculating, but, it's nice to hear the "hope".

I told her that we would work on things over the summer and she acted a little concerned about him progressing TOO much - she doesn't want him to not qualify for services next year. I tend to agree with her. Yes, I want him to progress - and quickly. I want him to be happier and able to communicate, of course! But, I know that we need intense therapies for the next 2 years, or he'll have less of a chance of fitting in with his peers at some point. So, I don't want them to pull him out of this classroom because he wouldn't get near the intense ABA that he's getting there. So, it's a catch 22, I suppose.

So, will report more next week (or sooner if needed) regarding the Enhansa and the results.

Oh, I almost forgot!! Today, he said "Hi Uncle D" when his Uncle walked in the door. Yes, it was prompted, but stringing 3 words together .... as far as I'm concerned, that's a sentence.

DAN! Update

2009-05-12T13:17:00.003-04:00

We had a DAN! appointment yesterday. Labs looked good, although Holden may be slightly anemic. Which isn't surprising, since his diet is pretty limited. We will keep a watch on that and see what his numbers are next time around.

Will continue to chelate using EDTA & DMSA combo 1x/week for now. If we think he's plateauing, we'll consider 1-2 IV's per month, and suppositories 1-2 times per month to see if we can kick things in gear! But, for now, sticking with suppositories.

I'm going to start him on Enhansa on Friday. We're to start out at 150mg per day for 2 weeks. If we see improvements, he wants us to stay at that dose. If no improvements, we can increase a little at a time until we do see 'good things'.

We are going to do a 1 month round of Diflucan to see if we can get the yeast markers down. Then, we'll return to Nizoral. Sometimes I think if we could just get the yeast under control - we'd see some major gains. But, chelation will always stir up yeast ... so as long as we're chelating, we have to deal with yeast issues as well, unfortunately!

So...we march on!

the normal ups and downs

2009-05-10T20:07:00.003-04:00

As it normally is with autism, just when you think things are worse than they've been in a long time - this kid comes out of it overnight. Literally, over night.

Yesterday, Holden was still having an increase in "autistic symptoms". Stimming, lack of eye contact, not interacting with us as much, etc. Today, he has been a different kid. The only thing I've done since yesterday? Chelation. Last night, we chelated with 1 DMSA suppository and 1 EDTA suppository. DMSA at around 8:30pm, and EDTA at 9:15pm. Typically, for Holden, the day after chelation is a challenge. Then he eases out of it by the 2nd day. It was different this time. Today, he woke up happy. He was playing with Jackson, and more importantly, he wanted Jackson to play with him. He wanted Jackson to chase him and they laughed and ran throughout the house. He was singing, playing, smiling, and loving. So different than how he was even just yesterday.

Who knows why. I don't know if it's possible for it to be caused by the chelation last night. I suppose it could be...maybe we just got a great pull with this round? Or, maybe he just felt better today, physically.

Whatever it was ... it made my Mother's Day the best ever.

downer

2009-05-07T10:21:00.003-04:00

I haven't felt much like posting lately, which is why there's no updates since 4/24. The past week - 2 weeks has been challenging. Holden's symptoms have gradually gotten worse over that period of time. As of yesterday afternoon, he's extremely defiant, angry, looks as though he hasn't slept in a week (even though he IS sleeping), quiet, unhappy, unable to focus, and has lost a lot of eye contact. I am praying this "regression" doesn't last too long. I have a couple of theories as to why this one's happening, but then again, I could be wrong. This may just be another "healing regression" that he will come out of on his own. It's just that this one's lasted longer than the one's previously. Yesterday afternoon, I "fought" with him for hours because he would climb up on the arm of the couch and jump off. Might not sound too bad, and kind of "typical" for his age ... but we have a tile floor. And he wasn't bending his knees to brace himself for the "fall" - he would stiffen up his legs and I was so scared he was going to break an ankle or something! I tried telling him "no!" numerous times (which normally works for him), I tried putting him in time out, I tried sitting in his way so he couldn't get to the arm of the couch. He would just try climbing over my head. No matter how many times I would take him down and tell him "NO!", he would wait unil I was 10 feet away and do it again. It was exhausting. When Dietrich came through the door, I went out of it. I went for a walk and stayed gone for an hour. I just needed to get away.

My ideas:

- Yeast. We've been chelating now for 2 months using EDTA + DMSA on a weekly basis, using suppositories. Before we began this round, his OATS showed extremely high levels of yeast, so we treated with Nizoral for a month before starting chelation (and we're still using Nizoral).

-He's been off the NuThera for 2 days now because I haven't been able to order it yet. But, NuThera is just a multi - so, would it cause this much of a reaction to not be taking it??

-I've given him OoO twice since Saturday - just a few drops at a time. ?????

-Sensory input? That has nothing to do with the being tired, etc. But, the jumpping off of the couch and landing like that - kind of 'shocks' the legs and joints. I thought about this this morning, so I'm going to check into our OT benefits.

????????

daily data sheet from school today

2009-04-24T17:26:00.001-04:00

"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

2009-04-24T12:33:00.004-04:00

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.

Jim Carrey's Article re: Vaccines

2009-04-22T17:54:00.001-04:00

Click on the title of the post to read the article. It's worth the time!

YES!!

2009-04-16T21:22:00.002-04:00

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!!!

playing

2009-04-14T10:13:00.004-04:00

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:

Four

2009-04-10T20:51:00.005-04:00

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!

huh.

2009-04-08T13:54:00.003-04:00

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.

waiting for the other shoe to drop

2009-04-07T11:17:00.005-04:00

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

2009-04-07T11:12:00.003-04:00

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.

World Autism Awareness Day (WAAD)

2009-04-02T10:44:00.002-04:00

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.

I AM SPEECHLESS

2009-04-01T13:04:00.001-04:00

click on the title of the post.

spontaneous language!

2009-03-30T16:33:00.002-04:00

so, as i'm throwing myself a pity party last week - here's how quick things turn around. autism = roller coaster.

today, i picked up holden early from school and his teacher told me that he said "bye-bye" to his classmates WITHOUT prompting. then, we got home and he climbed up on the couch and said "too off". too = shoe. took his shoes off. got up and ran to the bathroom saying "pee pee in the potty!".

since he will be 4 on april 10th, i've been hoping and praying for his speech to take a huge leap. most of his language is either prompted, or echolalia. so, any spontaneous language is great for us!!!

my kid is a rockstar.

monday

2009-03-30T11:48:00.002-04:00

so i was able to spend a little time away this weekend. i went to see a movie and "chill" by myself. it was nice. i needed it. i feel better than i did when i posted the last post. we chelated on friday night. a combination of EDTA & DMSA (2 suppositories). he was able to tolerate the DMSA this time, so that's great. i know we get better pulls when we do the combo. i worried a little that we'd have to go back to only EDTA after the first 2 tries, but this time, it was fine. so, next weekend, we'll do the same. saturday was rough, as it always is the day after chelation. thankfully, that's the day i had some time for myself. it's hard to watch him when he's having a tough time. yesterday (sunday) was better. he was more aware, and more verbal - whereas on saturday, it was tough to get him to say the things he always says ... without prompting. and yesterday evening, we were back to the 6:30, 7pm bedtime, so that was nice.

we'll see what this week holds, but i'm optimistic once more.

one of those days. the ones i hate having.

2009-03-26T14:05:00.002-04:00

So, I just sent this to a friend of mine. I'm posting it here, too, because I know there are other moms out there feeling the exact same thing. And somehow that makes me feel a teeny tiny bit better. Lucky friend, huh?!

I'm afraid I'm not much (good) company today. Today's one of "those" days. I'm questioning everything about Holden and his hopeful recovery. Are we doing enough? Should we have stayed with our doctor in Tampa? Even if we wanted to, we couldn't, because he doesn't file insurance so we couldn't afford $300 visits each month. They see patients all over the world, so being here isn't a problem. We could have phone appts. But, like I said - we can't afford them. Is there something I'm missing? A therapy? Supplement? Treatment? Did we make the right decision to leave Dr. Berger's practice? I mean, isn't it worth living out of a paperbag if we have to, to get him the best treatment possible? I feel like we're dragging along now...not making much progress at all. What am I doing wrong? Why isn't he making more progress with speech? Why is he up everynight this week til 9pm, stimming away in the bedroom until his little body gives up and finally goes to sleep because it has no choice?

I guess it's just been a tough week, transitioning back to school. I keep telling myself that it's because he just needs to get back into the "groove" and that he'll be fine and we'll continue on the road to recovery and making progress.

But he will be 4 in exactly 15 days and that scares me. I had hoped we would be so much further along when he turned 4. Two years ago, I looked at "4" and thought that he would definitely be able to understand it was his birthday by then, surely, right? And, he would be talking in sentences, and telling me he loves me, right? And he would be playing with his little brother by then, and enjoying others, right? At least a little. Those are the thoughts I had and none of them are coming true and it just really really sucks.