Story Telling!!

Today Xan did something he has never done before. He, Tyce and myself were just hanging out in his room. He laid down under the covers and was like "Once upon a time, Clifford the Big Red Dog............Blues Clues, Good Night, The End." He made up a story!!!! Then he's like "Your turn." We continue to exchange bed time stories for like 3 or 4 times. He made up something about dolphins playing with friends, etc. It was amazing!!! We have recently increased CoQ10 and added Carnitine back in. Both for mito support.

Awww

Just wanted to post a sweet thing Xan said to Chris yesterday. He hugged him and said "I love you, my best friend, DaDa." It was SO sweet!

April 23rd

Just checking in. Xan is still doing well. He did GREAT at his birthday party! We had his party at an inflatable jumpy place. Four of his classmates came and so did some of my friends/kids and 2 friends from his bus stop. He was running with them the whole time and hardly noticed I was there :) His cake turned out fabulous thanks to my favorite gf cookbook in the world! (You Won't Believe It's Gluten Free).

Things have been pretty uneventful. His stimming is still WAY down and if he does it, it is much more functional...jumping or beating on the couch or something. This is such a huge thing for Xan. He has had so much stimming behavior for years.

I started Xan on a few days of Flagyl recently. I had over-treated for yeast and felt like he was slipping a bit. After a few days on Flagyl, I stopped it and his behavior was great. I remember thinking that day that he seemed pretty recovered. I don't think I saw any stimming. We went to Burger King and he and Tyce had a ball. BUT, on Saturday (I think it was the day after BK) we went to the new jumpy place in town for a playgroup. Xan kept banging his hands on the ground and was "dusting" his hands on his hair/head. Also, we went to Busch Gardens that night and his behavior was out of this world. He wasn't listening well, he kept dusting his hair, and he was crying, etc. I was so discouraged. I emailed Michelle (my only follower LOL) and she reminded me that it was probably die off. But what in the world could be dying off?? I did some research and found out that Flagyl is one of the most popular medicines prescribed to treat....parasites. I remember after giving Vermox several months ago, he had very similar behavior to this. Parasite die off is much worse than yeast die off here.

So, I started the Flagyl back up because I knew something needed to come out!! He only has a day or two left. This is a chelation weekend. I will report any changes I may see.

Supplement update/behavior change

Recently, Xan's stimming has been reduced a ton. He no longer is holding onto toys all the time either. I wanted to write down his supplement list and a few changes for tracking purposes.

FYI: I believe he is no longer holding things because of the chelation.

Supplements changes:

I removed SNT, stopped giving Vit. A drops and stopped Carnitine. I also have been watching his food/sugar intake since his last battle with yeast. It should be noted that his last yeast flare had lots of wiggling fingers associated with it, which was not normal for him, at least to that degree. So, I have been trying to keep his yeast under control. I also removed DMG/Folinic Acid. Here are his current supplements:

AM:

Carnosine
Taurine
CoQ10
Tri-Enza
B-6
P5P
NN Fish Oil Capsule
Milk Thistle (if on RX antifungal)
Vit. C
Calcium Powder
Magnesium Citrate powder
Cod Liver Oil
Brainchild Minerals
Colostrum
Yeast Control (from rotation)


LUNCH:

TriEnza
Yeast Control (one of the items from our rotation)

PM:

Carnosine
Taurine
CoQ10
Tri-Enza
B-6
P5P
NN Fish Oil Capsule
Milk Thistle (if on RX antifungal)
Vit. C
Calcium Powder
Magnesium Citrate Powder
Cod Liver Oil
Brainchild Minerals
Colotrum
Yeast Control (from rotation)

NIGHT TIME:

Zinc
Melatonin
Probiotic (from rotation)
Glutathione Cream
LDN Cream

*Yeast Rotation: Ketaconazole on Sat, Sun and Mon
The rest of the week, we rotate ThreeLac, YeastAid and GSE

*Parasite Protocol: We give parasite cleansing products 4 days before-4 days after the full moon each month.

*Chelation Protocol: DMSA/Glutathione suppositories 3 days on/11 days off. Currently 400 mg DMSA/250 mg Glutathione (was previously 250/250)

Xan's verbal stimming has been reduced a ton and so has his stimming. I think from treating yeast, watching food/sugar intake and cutting SNT and adding B-6 and P5P has helped this. B-6 is supposed to be great for stimming. And I strongly feel that chelation has helped alot.

Searching for an Enclosure....and finding LUCK!

So, Xan's 5th birthday party is coming up!! I wanted to get him a trampoline for the yard. So, Tyce and I ran to Sam's the other day to get him a trampoline and enclosure, but they were all out of the enclosures...seems they are cancelling the item. So, I found it over in Chesapeake. It's across the ocean...about 30-40 min away. No biggie. I did the "click and pull" online so they would have it waiting.

So, off the Smith Family went last night. Our plans were to go to Sam's Club and pick up the enclosure, go to Burger King for dinner and then go to Kangaroo Jac's to jump in the inflatable jump houses. So, we got lost because a bridge was closed. After driving awhile, we decide to go ahead and stop to eat. The people took forever!!! Xan patiently waited with his dad at the counter while Tyce and I sat at the table waiting. We finally get our food and Xan eats casually. It's weird how "uneventful" stuff can be sometimes and how GREAT this is!! Xan was such a huge huge tantrum thrower before.

So, we finally find Sam's. The "boys" waited in the car while I went in search of our enclosure that was supposed to be waiting for me. No such luck. I waited in line for probably 30 min and THEN they couldn't even find it. There were none on the shelves either. They had since been replaced by a different brand..different than my trampoline I had waiting at home. While I am scanning the store, I hear "Mrs. Smith, please come back to the service desk..." over the intercom. I come back and there was the encosure I need, just sitting there on a flatbed. I look kinda confused...there is a woman standing next to it. They tell me that they are completely out of the enclosure I need, but the lady who had just walked in was actually returning the exact enclosure I needed!!! Can you believe that!!!! We had gotten lost, driven around forever, stopped and ate BEFORE going to Sam's rather than after. The timing had to be exact for me to arrive right around the time this woman was returning the exact thing I needed!!! Can we say LUCK!!!!!!

Wow, anyways, now off to the jumpy place. We find it and Xan is SO excited. We muster the rain and get inside. Xan is excitedly taking his shoes off and can't wait to jump...when....The employee tells us that unless we are there for a birthday party, they are CLOSED. OMG!!! How sad is that!!! We tell Xan and of course he gets so sad and starts to cry. But wait...it isn't an "autism" cry. It's a "normal" cry for a kid who can't jump like he had SO wanted to do. I guess it's the equivalent of driving to DisneyLand and then turning around and going home. We tell him we are going to Jumpin JellyBeans instead, which is in Norfolk and he quickly calms down. Mind you, he is talking this whole time, telling us he wants to go to Jumpin Jellybeans and understands that we are actually going there...or so we thought. We realize that JJ will be closed by the time we drive all the way over there. I tell him and he starts to cry...but not an "autism" cry. It's a normal cry...tell me he wants to go, etc. I tell him we are going to get a toy at Target and also tell him we can get an ice cream bar when we get home (coconut/chocolate ice cream bar (gfcf) ) and he is fine.

He had a great time in Target, looking around at toys, Wii games, DVD's, etc. I just love how "normal" our life is right now!!! A trip to the store is so much fun to me because I love to see him excited about stuff and not tantruming all the time. So, Xan made out with 3 animals, the new SpongeBob DVD and a yummy ice cream bar when he got home. Boy, he couldn't get in the door quick enough to eat it!! I love him :)

Speech Update

Oh yeah...I forgot to post our results from Xan's speech eval which was done a few wks. ago. In late February of last year, Xan was evaluated for speech. In regards to expressive/receptive speech, Xan was tested to be at the 1 yr/10 month old level and the 2 yr/1 month old level. He was re-evaulated almost exactly 1 year later (last month) and he was tested to be at the 3 yr/9 month old level and the 3 yr/8 month old level. That means that he has made between 1 1/2 yr-2 yrs. worth of speech progress in 1 year. I was/am extatic :)

What a great day!

So, today we had Xan's parent/teacher conference. He is enrolled in an all day Pre-K program. It took some adjusting at first, but he finally settled down and into his school routine. School assemblies were hard for him. Although he is not usually a sound sensitive kid, it is something about arena/theatre type places that Xan doesn't like. Also, the teaching style of his current teachers left alot to be desired. I was so used to daily planners, writing notes back and forth, steady contact, etc. with his PEEPS teacher, so when we basically got NONE-no contact most of the time, it was disheartening. Xan would cry daily, not wanting to get on the bus, and I was left to just using my imagination in regards to how the rest of his day was going. I had considered pulling him out, but decided to stick with it. After all, it is in a public school, a good school and he will be in kindergarten next school year. Might as well keep the ball rolling...

So, back to my story, now that you have a little history. In prior parent/teacher conferences, Xan would get upset and not want to go to school, in fear of being left. Well, today, he was excited for some reason, kissing all over Tyce, etc. Upon walking in school to sign him in, I hear an energetic "Hi Xan!!" from the secretary. You could tell Xan thought he ran the show :) We walked out into the hall and started on our path to his room, when a lady blurted something and hurriedly jumped out of her chair and out to the hall. She was like "I LOVE your son!!" I had recognized her from the initial school evaluation, but had no idea that she worked with Xan. She is a reading expert/has a main office in the hall and works with the kids. She goes on to tell me that Xan has made tremendous progress...almost like it is unbelievable. I felt myself blushing at every remark :) She statess "Did YOU know he is a Stage II reader now??" She states that she and Xan's teacher were screaming with excitement one day in regards to his newly discovered reading skills. She stated that when he read the page and flipped, and read the other page, that he got a huge smile on his face and was so proud :) She told me that she could have handed over her pay check right then and there!! She told me that he is hugging her and other people now too. Then she told me something...and I felt like I was going to bust out crying...I couldn't even look at her because I was trying to hold back the tears. Her eyes got very big and she looked at me dead in the eye and said "EXPECT GREAT THINGS OUT OF HIM...." I wanted to bawl my eyes out. For the past year and a half or so, I didn't know what to really "expect" out of him. His whole future was a blur, a fear, a dream. I appreciate those words and will never ever forget what she said.

So, she kept on some more and I was loving every minute of it :) The principal was there, bragging right along with her. Next up...his conference. We got a few more greetings from people and then went in for our conference. Only one of the teachers and one assistant were present. They both bragged on my boy endlessly...not one bad thing was reported. Remember the assembly issue I told you about?? Well, over the past several months, they have gone from having to have him sit separately with the teachers and having to "walk the halls" to calm down several times, to finally being able to sit on the floor with his friends, but on the side with his teacher still next to him. Well, yesterday they had an assembly, and he finally was able to sit completely with his friends..no assistance at all. She says he was clapping like the other kids and that you would not have been able to pick him apart from anyone else. This was so nice to hear. The teacher told me that every time she thinks about how far he has come since last year, she gets tears in her eyes. This was heartwarming to say the least.

So we leave the room and the guidance counselor says "I know you got a good review!!" I agreed...that was such an understatement. What an unbelievable feeling I had as I left the school. I think my son is going to be okay!! He still has lots of issues to work through, but he is progressing and is loved and accepted at school. He is becoming more independent and takes pride in the people he knows and the work that he does at school. He was so proud as I kept going on and on about how well he was doing in school. He loved being the center of attention.

Tomorrow is a new day. You never know what fires you may have to put out. But for today.....Well, today was a fairytale.

It's the first week of March....

Just thought I would write a bit while I have a second. I have been doing some soul searching...trying to figure out how much/what progress has been made over the past year. It's with mixed feelings that I write that it has been just over a year that we have been treating Xan biomedically. On one hand, I realize that he's made lots of improvements. On the other hand, I realize that he is not fully recovered. Once you start treating, you get so anxious!! He is now able to look at the TV and tell me everything that is going on..what happened, etc. I remember back in Sept., I had asked him what happened and he said that the character on Wubzy was "so sad." When I asked him why, he said "He ate a bunch of cake." I remember I felt frozen. I could not believe that we just had some back and forth interactions and he was telling me WHY somebody felt that way. I was blown away. NOW, that stuff is common. He can tell you play by play what is happening. It has been about 5 mos. since that happened. Also, around the same time, he said "Awww..Tyce, don't cry. Awww...it's ok." And I thought I was going to pass out right then and there. Now, it is not uncommon for him to say these things.

I also want to post some things he is and is not doing right now so I can track progress in the future. He is bossing Tyce around sometimes "No crawling Tyce!" "Get my hand,Tyce!" He likes to pick him up and wrap his arms around him and Tyce gets so mad! He will tell me "Mama, Tyce is crying!" When I ask him why, he will say he wants some milk, wants a carrot (if he recently saw him eating carrots) or things like that. He LOVES playing the Wii with Chris. He automatically knows what buttons to push for certain things and will push several in a row. He now wants daddy to lay down with him at night instead of me!

He still does have meltdowns from time to time...tends to be when it is "his turn" to do something. He loves to run and laugh/chase with kids, but has issues with normal conversation. Might say something like "Come back!" or "Don't worry! I'll save you!" or things like that. Nothing too deep though. He has issues with eye contact with other children and still has auditory processing issues and doesn't understand some concepts after being told.

More later....

Just checkin in...

Just taking a sec to jot down a few things. I am still trying to get to the bottom of Xan's stutter/stammer. It comes and goes in severity. This past summer it started and was really bad, then completely went away. This happened several times..it was all or nothing. Now it ranges in severity, but is always there. I hate it. He still continues to progress in other areas. I know when or if it gets really bad again, to hit the gut hard with anti-bacterial stuff, yeast stuff, parasite stuff and lots of probiotics.

Other than that, Xan has been doing some great stuff lately. I was trying to help him with the Wii last night when he and Chris were playing. He told me to stop it and that he was "trying to play the game!!" Just like I was annoying him or something :) It was great :)

Last night, he and I went to dinner at Red Robin (since he can eat gfcf there). Afterwards just the two of us went to Walmart. He found a toy AND a DVD he wanted. I told him he could only get one thing and he kept saying he wanted both of them. Then he tries to be sneaky and starts casually walking while holding onto both toys and starts "sucking up" to me. He keeps smiling and grabs my arm and kisses it and was like "Mama, I love you"...trying to be sneaky. It was hilarious. Needless to say, we left with BOTH toys. I had to reward that.

I am noticing more sentences and comprehension. Also, he is buttoning at OT now and did the whole block almost completely by himself for the first time at our last session. His fine motor improved after the parasite cleanse and chelation.

Our Introduction

Hello. I am the mom of 2 boys, one of whom has autism. He was only diagnosed with a "speech and language disorder", but I have no doubt at all that he is on the autism spectrum. After months of crying, grieving and researching like a mad woman, I experimented with the gluten free/casein free diet twice before going full time in Jan/2008. The results have been miraculous. He is also on a host of supplements and we are also chelating him right now. His symptoms before biomedical intervention were:

Multiple tantrums per day
Vomitting for no reason
Extremely picky eater
High anxiety
Made noises all day longWiggling fingers/hands in air running
Speech delay
Social delays
No play skills
Lots of sensory issues
Holding onto toys
Lack of toilet training
Didn't enjoy normal things
Overly attached to me
Etc.

Since treating him, he potty trained himself with no assistance, 2 days after starting "the diet." His noises he made have been reduced by over 75%, his tantrums are GONE, increase in play skills, social skills, speech and comprehension, etc. Other therapies we are doing include:

3 hrs. per week of in-home ABA
1 hr. per week of Speech Therapy
1 hr. every other week of Occupational Therapy
Enrolled in full day Pre-K Program

To take a look at Xan now:
He speaks in sentences, has some conversational speech now and has a large vocabulary. Spontaneous speech has improved tremendously. He is finally adding in extra things like how he feels, specific things he wants to eat, places he wants to go, just out of the blue stuff. He has an opinion now! He wants to wear his "crocodile pants" all the time :) He loves to play with other children and responds to simple questions. Still no full conversations with kids, but we have come a long way! He still has some tactile issues and can cry easily when he gets his feelings hurt. He seems to have some issues with controlling emotions. He has no aggression issues though. His stimming has been reduced dramatically, but he does still have some, at home mainly. It is much more functional than it used to be though and much less frequent. He appears to just be shy to alot of people. He can have issues with eye contact if he doesn't know you. He is very affectionate with his baby brother and with us. He is just a joy to our lives and he is finally happy! I am excited about creating this blog because I want to keep track of all of his progress. Other than healing Xan, my other interests are collecting cookbooks, candles, trying new recipes, loving on my baby boy Tyce, trying to squeeze in some time with my hubby Chris, and soaking up all the fun stuff to do in this area. We are always on the go...shopping, beach bumming, water parking, amusement park going, zoo exploring, traveling...you name it, we do it. Ok, let's get started :)