Matthew - The Cutest Boy on the Spectrum ;)

Summer Update

2010-07-26T11:42:00.049-04:00

Well, I finally have some time to update my blog! The last time I was here was in November...where does the time go??! Here is a brief update on what has happened since then:
* Matthew turned 5 years old
* he graduated from developmental delay pre-K
* he is being mainstreamed to typical (general ed) Kindergarten
* and is almost done with his 7 week ABA summer camp.

Matthew has continued his ABA, Occupational, Speech, and bio-medical therapies. He has come such a long way since he was diagnosed at age 2.5. He was dx'ed with "moderate" autism but I believe he is more "mild" now. His speech continues to progress, he movie scripts/hand flaps less often, and he has made three "best friends" at camp.

We have been reviewing his letters, numbers, shapes, colors, etc in preparation for kindergarten and he knows them all. He can also read some sight words and tries to sound out words in books. The area we need to work on most is social skills...communication & eye contact is very good with family members but he needs to improve on these skills with others. I am a little nervous about him going on to typical K b/c I am afraid some of the other kids might make fun of him, but he's a tough cookie and we will work through it....and his OT/ST/ABA therapists can help as well.

Here are some recent pictures of Matthew. He is getting really tall. We have been hitting all the local beaches, museums, and parks this summer. John will deploy soon so we are having as much fun as possible before he leaves for a few months. I hope that you are all enjoying your summer! :)

Matthew's first trip to Disney World!

2009-11-16T14:09:00.003-05:00

Make an on-line slide show at www.OneTrueMedia.com

Here's a montage I made of Matthew's first visit to the Magic Kingdom...he LOVED it and we'll be going back soon! :)

Matthew Update (finally!)

2009-09-21T16:41:00.007-04:00

Wow, I can't believe it's been FOUR months since my last post. The summer just flew by! John was deployed and Matthew was busy with summer school, OT, ST, ABA, and therapeutic horse riding lessons. We recently moved from Northern Virginia to Jacksonville, FL...it is HOT here! Matthew is in pre-K now (the varying exceptionalities class, not the autism one). He has 1 teacher, 1 assistant, and 12 students in his class. He seems to like his new school and home. He definitely misses the DC metro and train at Burke Lake park, but we took him to the Jax zoo and the beach yesterday (which I think are making up for it.) Ok, time to get back to unpacking!

FUN @ the Fun Fair!

2009-05-18T17:29:00.005-04:00

Matthew & I attended the "Chatterbox Fun Fair" on Saturday. It was sponsored by the FCPS' Assistive Technology Services and held at a local elementary school. They had crafts, games, and an appearance by Jimbo the Clown. Matthew had a great time. He LOVED the gigantic moon bounce. Here's a video with the pics.

Make photo slide shows at www.OneTrueMedia.com

Attended my 1st DAN conference & loved it!

2009-04-22T10:33:00.030-04:00

I was in Atlanta from Thursday til Sunday at the Autism Research Institute's (ARI) Defeat Autism Now (DAN) conference. I am not crazy about that title..I think Heal would be a better word than defeat...but that's another post!

I learned so much about neurotoxins, detoxification methods, diets, our kids' GI tracts and immune systems. I met some of my on-line friends (fellow warrior moms) and saw some of my scientific/medical idols like Dr. Bock, Kartzinel, Jepson, and Wakefield (who is HOT! :)

I want to list the lectures I attended to give you an idea of what ARI/DAN is about and what treatments I am researching/implementing for Matthew. [For those that don't know: we have been doing "bio-med" with the help of our DAN Dr. Megson for 1.5 years and have seen steady improvements. I am a firm believer in the protocol and while it may not recover/"cure" every child, it will certainly heal the yeast/bacteria in their guts (allowing them to focus/learn during school/therapy) and rid their bodies of the harmful neurotoxins they received from their environment (including mercury & aluminum from vaccines). We've been chelating Matthew (with transdermal DMSA) since last summer and the toxic heavy metals continue to excrete...it takes 2-3 years.]

Defending your child from a toxic world (Dr. Freedenfeld)

Intro to the DAN treatment approach (Dr. Mumper)

The child as a whole: why biomedical & behavioral interventions [ABA] are both critical to growth & recovery (Dr. Granpeesheh)

Nourishing our children, Evolving diets for autism (Julie Matthews)

Achieving a quality elimination diet & beneficial nutritional supplementation (Dana Laake)

The autism-digestion-brain connection (Dr. Lipski)

Tools & strategies to survive the diagnosis, & thrive through the recovery of an affected child (Dr. Levinson)

Biomedical interventions from A to Zinc (Dr. O'Hara)

Mind & Gut: the GI tract & autism (Dr. Hanaway)

The ABCs of immunology in ASDs: improving immunity & understanding inflammation (Dr. El-Dahr)

Metabolic system in autism (Dr. Jepson)

The brain concerns in ASD involve more than the gut-brain connection: neurotransmitters & neuroimmune issues in autism spectrum disorders (Dr. Bradstreet)

Chronic fatigue syndrome, autism, and introducing autism360.org (Dr. Baker)

Clinical approaches to detoxification in autism spectrum disorders (Dr. Bock)

The road to recovery: walking with patience, peace, & perseverance (Dr. Levinson)

T cell regulation, inflammation, & autoimmunity: resolving a chaotic paradox in autistic enterocolitis (Dr. Wakefield)

On Saturday night, I hit the town with Janine & Rebekah...2 moms that I met on-line shortly after Matthew's diagnosis and have kept in touch with on Facebook. It was great to finally meet them in person! :)

Happy Birthday Matthew!!!

2009-03-20T12:29:00.006-04:00

Today is Matthew's FOURTH birthday. We are having a party for him tomorrow..invited all his friends from preschool (both autism classes). Here is a video montage of my favorite Matthew pictures taken over the last year. I hope you enjoy it & Happy Spring! :)

Make an on-line slideshow at www.OneTrueMedia.com
'>http://

Make an on-line slideshow at www.OneTrueMedia.com

Trip to GA/John's Change of Command

2009-03-11T21:24:00.003-04:00

Matthew & I (along with my dad) flew down to Kings Bay, GA on Wednesday for John's Change of Command ceremony/reception. We were there until Saturday and it was a big break in routine for Matthew. Yes, he had some tantrums but had his good moments as well. It was his first time flying. He did better going than coming back...the flight attendant made him turn off his DVD player (he was watching Cars) and buckle up for landing & he didn't aprreciate that!

Here is a video montage I made from the pics we took...hope you enjoy it!

Photo and video editing at www.OneTrueMedia.com
'>http://

Photo and video editing at www.OneTrueMedia.com

Matthew's Heavy Metals & MTHFR Mutation

2009-02-20T11:00:00.008-05:00

Above is a picture of Matthew's Fecal Toxic Metals test results. As you can see he is high in Antimony, Nickel, and Tungsten...and pulling lots of other metals. (Mercury is always the last to come out so it is low here.) I've been getting some good advice from my autism mamas on FaceBook, but if you have any advice please comment! This test was done after his 10th round...a round is 3 days on, every 8 hours of transdermal DMSA (cream applied to his feet, back, shins, thighs, or forearms), then we take 11 days off. Most people say transdermal is ineffective and go for oral, suppository, or IV chelation. Well, in Matthew's case, the transdermal is effective and we are sticking with it. His DAN wrote "incredible pull of metals" on her note..which is great that they're coming out, but not good that they're in his little body to begin with!

His blood tests showed that Matthew has the "double defect in MTHFR" which is a genetic mutation. Per LabCorp: "two copies of the C677T mutation were identified. Results for the A1298C were negative." ...so he has 2 copies of the same mutation (C677T), which means he inherited them from both John & I. I will call my doctor next week to schedule a blood test. I read some of the risks associated with this mutation are: heart disease, blood clots, stroke, etc. Our DAN noted that Matthew will have to be on B6, B12, and folate for life (all of which he is already taking - but B6 in P5P form and follinic acid which is folate broken down). This is not good news, but at least we know he has this and can plan accordingly. (BTW, I specifically asked for this test b/c I had heard it was more common in kids with autism.)

Snow Day!

2009-01-28T18:20:00.020-05:00

We have SNOW!!! John is home visiting this week & Matthew hasn't been at school since last Friday. He had a 4 day weekend and then school was cancelled today due to snow/ice.

We took Matthew out to play in the snow and he rode on a sled for the first time.

He LOVED it!

Quick Update & A Few Pics

2009-01-06T10:41:00.013-05:00

Happy New Year everyone! Family update: John moved to Georgia on Sunday (he's attending school & then reporting to his new submarine); Matthew returned to autism preschool yesterday (his new line: "I can-ant go to school"); and I'm almost recovered from my hernia surgery/the holidays & have begun my [annual] new year's diet/exercise program (hopefully this year it will last!). Here are a few pics from Christmas...yes, Matthew is still cute and his blinking has stopped - yay! :)

Matthew Won A Contest!

2008-12-27T10:15:00.001-05:00

http://www.ageofautism.com/2008/12/holiday-autism-supplement-contest-from-lee-silsby.html

Happy Holidays Everyone!

2008-12-21T20:33:00.007-05:00

It's been almost 3 weeks since my last post. It's been hectic to say the least...John has been back & forth; Matthew has been sick, had ring worm (a yeast rash), and now has a very yeasty gut; and I had hernia repair surgery last Monday and spent most of the week in bed (mom came to care for us). I'm slowly getting better and get my stitches out tomorrow.

Good news: John will be home for Christmas and Matthew's blinking has diminished. It hurts to sit at the computer, so I'll make this short and sweet: we wish everyone a merry Christmas and a happy & healthy New Year! Hope you enjoy the video of Matthew singing Jingle Bells - he knows many of the words, and when he forgets he just improvises!

3 Weeks Later - Video Update

2008-12-02T21:19:00.010-05:00

It's been 3 weeks since Matthew's blinking started. We've seen his pediatrician since my last post on this topic. He says it's a "tic" that *might* have been set off by the dilating eye drops and "may or may not go away". Unlike the eye doc's recommendation (to punish Matthew with saline drops), the ped said to ignore the blinking/don't bring any attention to it. So that's what I've been doing. Since Friday, it seems as if he's blinking harder with one eye than the other. I took this video tonight and emailed it to his neurologist to get her opinion...I'm sure she'll reply with "let's do an MRI!" but the answer is still "no more sedation!". I don't feel they are seizures b/c he repeats and answers questions while blinking. So tell me what you think...if you have seen a child do this who in fact has seizures, I'd like to know. I'm also looking for more info on tics and what can be done to decrease them. BTW, I received the results of his blood strep tests today and they are negative (= good, no PANDAS). We go to see the DAN doctor on the 12th.

Other news: John was home for Thanksgiving. It was just the three of us and Matthew was very happy to see his daddy again! John is in Norfolk this week but will be home next week. He'll be home every other week during December...which is good b/c I am having my hernia surgery on the 15th (mom is off for a month so she'll stay with me on the days he is away). It's a 2-4 week recovery period, and I'm not allowed to lift anything over 15 pounds for 6 weeks...that includes 40 pound Matthew!

10 Commandments for Parents w/ Special Needs Kids

2008-11-20T16:39:00.003-05:00

Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author Unknown

Update to: Horrible Reaction to Dilating Eye Drops

2008-11-14T17:02:00.010-05:00

I took Matthew to his pediatric eye doctor last Friday. On Monday (maybe Sunday?) I noticed he was blinking hard with both eyes..Matthew never blinks like that. The only thing "new" that we did was get the dilating drops in his eyes. Here we are one week later and Matthew is still blinking and doing it more often. It is very disturbing for me to watch. I called his eye doc and his advice was to put saline drops in Matthew's eyes whenever he blinked...that would teach him to stop blinking (aka punish him)..I don't think so! Matthew is NOT blinking on purpose...watch the video, it is completely involuntary (he is trying to watch a Veggie Tales movie).

I found out that Johns Hopkins Children's Hospital has an Eye Emergency Room so we are driving 1.5 hours tomorrow to find it! Hopefully someone there will tell us what we can do about this...I firmly believe it is a side effect of the drops which contain: cyclopentolate hydrochloride, benzalkonium chloride, boric acid, edetate disodium, potassium chloride, sodium carbonate, and hydrochloric acid. Please pray that the blinking stops.

********************************************

SATURDAY UPDATE: The trip to Hopkins was a total waste of time. There was a young Resident on duty there and he obviously had no experience with such blinking or kids for that matter. He actually wanted to put more dilating drops in Matthew's eyes to examine him. I said NO WAY and he said there was nothing else for him to do. I kept asking: "What is this?...Why did it start and how do I stop it?...Have you ever seen this before?" He had no answers and told me to see our pediatrician. Wow, I drove all the way to Baltimore for that?!

Halloween, Blog Anniversary, & My Birthday!

2008-11-02T12:58:00.017-05:00

It's been a festive weekend...today is my 38th birthday, Friday was Halloween (watch video) and also the one year anniversary of this blog. Don't ask WHY I started the blog on 10/31 last year...it just happened!

Matthew had a blast on Friday night. He was a Cowboy (b/c he loves horses) and enjoyed going door to door for candy (which I later switched out with GFCF versions). He said "hello...trick or treat...thank you" at every house. He received many compliments and one lady even said he was her favorite and gave him a special toy. Unfortunately, John wasn't here to participate but I have plenty of photos. (See Facebook :)

Weekend Update

2008-10-27T12:28:00.024-04:00

It's been a little over a week since my last post. Yes, I've been spending more time on FaceBook (renamed 'CrackBook' by my friend Nissa b/c it is so addicting) than on blogs lately. I will try to play catch-up this week.

Matthew is doing fine. We received the results of all his Doctor's Data lab tests and he "had some good heavy metals pulls" from the transdermal DMSA (according to his DAN) and a lot of yeast and bacteria in his gut. So I'm getting his rx antifungal filled (Ketoconazole) and added Candex and Grapefruit Seed Extract to his daily juice concoctions. I also added Selenium b/c his blood test showed he is low and he needs that to help move the mercury out of his body.

We had a good/busy weekend...John came home from CT for 36 hours to attend a wedding (at Woodlawn Plantation in Alexandria), to celebrate his 39th birthday, and spend a little time with Matthew.

I attended a 26 year reunion...a bunch of people I went to elementary school with reconnected on FaceBook and met up in Gaithersburg, MD for brunch. I hadn't seen most of them since I was 12 years old and it was fun!

Neurologist Visit

2008-10-18T16:51:00.009-04:00

I took Matthew to see his neurologist yesterday. His 24 hour EEG showed no seizures but did show some abnormal/slow brain waves which the doctor wasn't too concerned about..said it could be from a brain abnormality OR b/c he was tired that day.

She once again brought up the MRI..I told her we didn't want to do it b/c I've heard plenty of regression stories (due to sedation) on the various autism-related Yahoo groups I'm on. She said fine but if we notice any seizures, headaches/blurry vision, partial paralysis, etc I'm to call her ASAP. She told me she had another patient (a 5 year old boy with autism) whose parents didn't want to do an MRI but she finally talked them into it and found a brain tumor. I really don't think Matthew has that and he would tell me if his head hurt. Anyway, John & I agree that it's not worth the risk of losing all the skills Matthew has worked so hard for over the last year. Maybe when he gets older (and can lay still for 20 minutes) we will do one.

P.S. Matthew was on his best behavior at the hospital...very well-behaved, friendly, and cute!

Fun Weekend: Cox Farm & Old Mine Ranch

2008-10-13T14:35:00.008-04:00

Matthew and I went to two farms/fall festivals/pumpkin patches over the weekend. Above are 2 videos of him riding ponies...well, the first one was really a horse, it was huge! When I get a chance I'll create a slide show of our adventures b/c I took a lot of cute pictures.

On Saturday, we went to Cox Farm in Centreville, VA with Jenn, Carol and her baby girl. It was hot and the place was packed. On Sunday, we went to the Old Mine Ranch in Manassas, VA with the Mankin family. It was a lot smaller/low key and the kids enjoyed running in the corn maze and jumping in the moon bounce. Both places had pony rides, steep slides, petting zoos, hay rides, and lots of pumpkins/goodies. Matthew was so worn out that he came home and collapsed on the couch. I'm glad we went and will look for more horse riding opportunities next weekend.

Stressful Days * Plus Update *

2008-10-06T16:36:00.026-04:00

Cyndi Update: My internist called to tell me the lump is a benign breast tumor called a "fibroadenoma" and that I need to go back in 6 months for another sonogram. (The radiologist found another one by accident that day so I must have several of them.) Thanks for all your kind thoughts & prayers! :) 10/08/08
*****************************************

On Friday, I had a breast biopsy done b/c they found a solid mass on my mammogram & sonogram...I should know the results by Thursday. John is now attending a 2 month Navy course in CT but did come down for 2 days to celebrate our 15 year wedding anniversary and to take me to the procedure. My mom drove up from the VA Beach area to care for Matthew while I was recuperating...I was just really sore/swollen for 3 days afterwards and not allowed to pick Matthew up.

On Saturday, I noticed a brown spot on Matthew's tooth so I'm afraid he might have a cavity and he currently doesn't have any dental coverage. So John is working on that and I need to find a pediatric dentist who won't try to push fluoride (a neurotoxin) or nitrous oxide (a potential cause of regression) and has experience with ASD kids.

Today, I had to take Matthew to LabCorp to get his blood work done (4 vials full). This had to be done before breakfast and after obtaining a first morning urine sample (not easy for a boy who still wears diapers and refuses to wear a collection bag)...but Matthew did comply and peed in the little potty so I got the sample. Of course, the blood draw didn't go as easily, but there was less screaming/kicking this time. (I just hope they did the Doctor's Data kit correctly and remember to call DHL for pick-up!)

I forgot to mention we also did a stool sample on Sunday...that's always the easiest of the three tests...which are to check his metals excretion, kidney & liver functions, and red blood cell counts during chelation (and need to be repeated every 2 months - ouch!).

Now I'm waiting on a call from our DAN nurse b/c we agreed to change Matthew's DMSA formula due to a rash from the cream. We're supposed to change it to a emu oil base, but now the big-wig pharmacy is giving me a hard time about it...so the nurse is calling the owner to see what the problem is. I hope we don't have to go back to the other pharmacy b/c their shipping charges were 3x as high (overnight vs. 2 day air), they wouldn't bill our Tricare insurance directly, and the cost of the Glutathione cream wasn't being covered!

So now I wait... on many results.

P.S. Happy Birthday Dad/"Popeye" (Matthew's term for his Grandpa)...he turned 69 today, and mom (aka "Nini" = Granny) is probably stuck in traffic trying to get back home to him!

Dx - One Year Later & ABC Video

2008-09-27T16:42:00.016-04:00

Today marks one year since Matthew's Autism diagnosis. (And what a year it has been!) Matthew has progressed consistently and I am less fearful for his future than I was back then. Matthew still babbles sometimes but also had a large vocabulary and can put sentences together. He still stims but less so and doesn't act as spacey as he used to...he is more aware of his environment and has better eye contact. It's hard to attribute where his gains have come from...is it the GFCF diet, the preschool autism class, the in-home ABA, the private OT, the DAN supplements/anti-fungal meds/chelation, or maturity? We will continue his current treatments in the hope that one day he will get out of special ed and be "mainstreamed" in the school system. And if that doesn't happen, we'll accept that...all we REALLY want is for Matthew to be happy and healthy.

Here is a video I made last night after Matthew's bath. It is him is singing the alphabet song. He still has some pronunciation issues but has come a long way and we are very proud of him. Remember, this is a boy who only had 3 words at age 2...he didn't point, had limited eye contact, only sometimes responded to his name, and was often in his own little world. But even then, he was very loving and quite the little ladies man! :)

Hide & Seek Video

2008-09-24T19:45:00.007-04:00

John will be leaving in a few days for 2 months (he's going to CT for a submarine course). Matthew's Occupational Therapist recommended that we make some videos of Daddy so I can play these for him when he asks "where daddy?" or "daddy home?". Here is the first one...Matthew LOVES to play hide and go seek with his dad. He requests it every night as soon as John walks thru the door!

P.S. Please cover your eyes when I show the dining room table!!! It is covered with Matthew's school art projects, his lab test boxes, etc. That room looks like a bomb went off in there...I will clean it one of these days!

TGIF! and New OCD Behavior

2008-09-19T18:00:00.010-04:00

I can't believe I haven't posted in 11 days...I think that's a record for me! It's been hectic, plus I discovered Facebook and now have a semi-addiction to it. If any of you are on there, let me know and we can be "friends". :)

So it's another chelation weekend and we're getting the hang of it now. The only bummer is having to stay up late OR go to bed and wake up at midnight to give him his 3rd dose of the day. (I apply the creams at 8am, 4pm, and midnight.)

New since the last post: Matthew's obsessive-compulsive behavior. This started about the same time school did. He has to walk in a certain way or else he goes back to where he started and does it all over again (and says "no go this way"). He does this when coming down the stairs, walking thru the hallway, and going to the car in the garage. And today his teacher told me he is doing this at school as well. It is very frustrating, especially when we're in a hurry. I'm not sure WHY he's doing it or what to do about it other than try to redirect, but then he starts to scream/cry and create lots of drama. So if you have any insights/advice, please comment!

Round 2 of TD Chelation

2008-09-08T15:18:00.008-04:00

We did transdermal DMSA again over the weekend (Fri/Sat/Sun - applied every 8 hours). I'm a bit tired from the midnight applications, but other than that nothing bad to report. Matthew is no longer afraid of the gloves and tolerates the creams. He does seem to be more verbal and is putting little sentences together. Now we have our 11 days "off".

Back to PAC!

2008-09-03T21:08:00.007-04:00

After a 2 week break, Matthew is back at PAC (= preschool autism class). In his class, there are 6 students ages 2-5, one teacher, and 2 aides. Matthew, Heather, and Simon are returning students and the other 3 are new to the class (although one was in PAC at another school last year). Matthew was supposed to change schools this Fall but they "redid the boundaries" so he is staying where he is...which is good b/c he avoids the transition. Here is a picture of Matthew with his teacher, Miss Heather and his only female classmate (little) Heather. They attend 27 hours per week.

Doors, Elevators & Merry-Go-Rounds

2008-09-02T21:48:00.013-04:00

Matthew has a door obsession. Over the last year it has changed from the electric garage door to the bi-fold pantry doors to the sliding screen door, and now it's automatic doors (especially glass ones that slide sideways) at public places. For the last week, we have been working on his sliding door fetish and it is getting better (at least when another person is around like John or his therapist) but still needs work. Matthew gets upset if he doesn't follow a certain order, must watch the doors close behind him, and likes to repeat the process. This can make Mommy a little nutty when she is trying to get into/out of the library or grocery store in a timely manner!

Matthew also loves elevators...hmm, maybe b/c they have sliding doors! He will go up & down 50 times if you let him. The funny thing is he used to be terrified of these as a baby...he would shake with fear and I'd have to hold his hand/tell him it was OK. Now, I have to pull him out!

He also used to be afraid of the merry-go-round at Burke Lake Park. I don't know when/how he got over this fear, but he really enjoys the one inside Springfield Mall. Here are 2 video clips...one of us in the elevator there and the other of Matthew with his daddy on the ride.

GFCF Noah's Pretzels & Trip Down Memory Lane

2008-08-30T18:16:00.025-04:00

Today we took an impromptu trip to Gaithersburg, MD which is about 45 minutes from our house and one of the towns I grew up in (I was an IBM kid). The main purpose was to go to Lake Forest Mall to visit Noah's Pretzels b/c they offer GFCF ones there. Here's the link/story behind the shop (whose co-owner has a son with autism): http://www.noahspretzels.com/

We hit the pretzel shop first and introduced Matthew to the employees and ordered his special pretzel. They asked if I wanted to put a picture of Matthew on the wall (along with the other ASD kids who have visited there) and I said "sure!" and just happened to have one handy. (I brought a pic b/c I heard thru the grapevine that they would post it.) The sweet young lady (who said her 8 year old brother has autism so I'm thinking she is the owner's daughter) taped it right above the Time Magazine cover so if you look over Matthew's head here you will see his placement on the "wall of fame". We then took the pretzel to our next stop Red Robin for lunch. Supposedly their fries are GFCF so I let Matthew have a few along with the pretzel (which he liked but wasn't really sure what it was) and the food I brought for him.

After lunch, we rode the glass elevator and played in the middle of the mall. Matthew loved watching the elevator from the play area and all was good until an older kid body-slammed Matthew into the glass retaining wall and Matthew hit his head/back. The boy's mom apologized and told her spun-up son to go sit on the sidelines. Matthew was fine but shaken up so we left and went across the street to Marshall's.

After shopping, we went down the road to my old elementary school where Matthew climbed the stairs twice and briefly played on the playground. I had to add this pic so you could see the stairs the crazy builder made when designing the school. I started there in the 3rd grade and remember having to go up and down those stairs in the rain, snow, heat...what a work-out (especially for the kindergartners)!

* You can click on the pics to make them larger.

After the school, we drove by my old house. It looks basically the same but the trees in the neighborhood have matured. I moved there when the neighborhood (and actually the whole area of Montgomery Village) was only a couple years old...I remember everything being so new and "modern" for the late 1970's. (Hard to believe that was 30 years ago!)

First Round of DMSA Chelation

2008-08-29T11:45:00.014-04:00

We started transdermal chelation last weekend. It wasn't as scary as I anticipated but it was exhausting. We began Friday morning and dosed every 8 hours around the clock until Sunday night (well, it was really Monday morning). I had to mix and apply the creams to various parts of Matthew's body (where the skin is thin)...1/4 ml of DMSA with IPM and 1/4 ml Glutathione with it's IPM. I must wear gloves which Matthew is afraid of b/c they remind him of blood draws, but he is getting better with them. The hardest part for me was having to wake in the middle of the night to mix/apply the cream.

The schedule we use is 3 days on, 11 days off and we'll always do it on weekends so I can monitor his reaction. I was expecting a rash (a somewhat common reaction) at the application sites but he didn't have any. (Thankfully, he is not allergic to sulphur.) The only difference I noticed was that he was more tired/crabby on the 2nd and third day and then for 2 days after that. On the 11 days "off" I'll continue to give him his daily Glutathione cream at a larger dose (1 ml)...this helps with detox.

From what I've read, it usually takes anywhere from 1 to 3 years to chelate a child with heavy metal poisoning...hopefully it won't take too long for Matthew. He is young (almost 3.5) and has less exposure than older kids (especially the children that were clobbered with thimerosal during the 1990's). We'll keep doing the DMSA cream until we don't see good "pulls" (of metals in the urine/stool tests) any longer and then I think we'll ask for DMSA and/or ALA in capsule form (which I could mix in his juice). I know suppositories and IV chelation would get bigger pulls/faster results but I'm just not interested in doing those right now...besides our DAN doesn't do IV's and Matthew wouldn't let anyone put one in him!

P.S. Here's the link to the pharmacy/product we are using: http://www.leesilsby.com/dmsa.php

24 Hour Video EEG

2008-08-28T21:51:00.010-04:00

Yes, I know the girl pictured right is not Matthew but I forgot to take my camera to the EEG last Tuesday and this is the closest/cutest pic I could find on-line! We checked into the children's hospital in DC around noon and left there 24 hours later. It was a stressful experience. I chose not to put Matthew under general anesthesia b/c I heard stories of children with autism regressing b/c of it (especially nitrous oxide) so instead they wrapped him like a mummy in a sheet to attach all the wires, etc.

They glued about 30 leads onto his head and then wrapped it in gauze. The process took what felt like forever b/c Matthew was screaming and crying the entire time. By the end of the application, he had broken blood vessels all around his eyes and looked like he had big red freckles on his face (he still has a few). Matthew has sensory issues so having a stranger touch his head, clean the spot, put on the cream, place the lead, apply the glue, blow the glue dry... was pure hell for him. I had to help hold him down with another technician b/c he kept rolling over and shaking his head. (Matthew only weighs 40 pounds but he is a fighter and very strong when he is under stress!) It's not something we will do again any time soon...if ever!

Matthew was better once he got out of the sheet "straight jacket" and moved to his private room - which was in the new neuro wing and was very nice...had a gorgeous view of a reservoir and an old fort. He had a pack hanging from his head down his back and that was plugged into the computer with a very long cord so he could walk the length of the room. He did get the cord caught on furniture twice and pulled off the gauze cap which caused all the wires to fall onto his face and I was freaking out b/c I thought he would try to rip them off this scalp. I opened the door and yelled for help and the nurse came in and put his "silly hat" back in place.

I brought GFCF food and we were provided with meals (for him only) so I ate those and Ni-Ni (his Granny) went to the cafeteria. John came to visit after work. We couldn't use the DVD player b/c it interfered with the equipment so we watched TV, read books, sang songs and just hung out. Matthew would not put his head down to sleep so I got in the hospital bed with him and had him lean up against my chest. Once he was asleep I moved his head to the pillow and I stayed in the bed with him. He woke a few times during the night and I was glad I was right there to comfort him back to sleep. My mom also spent the night in the room.

I was supposed to press a button when I suspected a seizure but they (=staring spells) happen so infrequently that I never pushed it. I also had to move the video camera around when Matthew moved out of position so that was kind of neat playing with the mouse and watching his brain activity. It will be several weeks before we get the results. We go to see his ped neurologist in October.

Beach Video 2 (of 2)

2008-08-25T17:42:00.006-04:00

Here's the second beach video. We had a stressful week so it was good to relax on the beach. I'll add some posts on his 24 hour EEG, first round of transdermal chelation, and aquarium "visit" (not!) soon.

Beach Video 1 (of 2)

2008-08-25T17:33:00.006-04:00

We took Matthew to the beach on Sunday. He hadn't been since last summer and really enjoyed it. He has no fear of the ocean...which is surprising b/c he is afraid of showers and doesn't like to get his hair washed in the tub. He got knocked over a few times by the waves and it didn't phase him at all.

New Pediatrician (Mr. Rogers wannabe)

2008-08-21T17:56:00.010-04:00

I took Matthew to his new pediatrician on Monday. We are changing practices b/c his other ped is retiring and I am not impressed with the remaining doctors in the group. This new ped used to work at the Kennedy Krieger Institute (John's Hopkins) so he has experience working with children with autism. Of course, he is anti- all the bio-med treatments we are doing (GFCF diet, vitamin/mineral supplements, anti-fungals, and now transdermal chelation), but we only need him in case Matthew gets sick between his annual "well-child" visits...and they have weekend office hours! I had to attach this pic of Mr Rogers (remember his TV show?) b/c the new ped looks a lot like him and was even wearing the red sweater (with a teddy bear tie)...and it was 90 degrees outside!

Last Day at Summer School...and my first "video remix" creation!

2008-08-17T22:48:00.001-04:00

Great DAN Visit!

2008-08-11T16:03:00.012-04:00

We went to Richmond to see our DAN (Defeat Autism Now) doctor on Friday (pictured right). She's a developmental pediatrician with 30 years experience, has been a part of the DAN movement since its beginning, and has testified before Congress regarding the link between vaccinations and developmental disabilities. This is the third time we've seen her and I like her more each visit. Matthew was an angel at the office and flirted with the staff...the nurse there calls Matthew "her little boyfriend". :) But things got ugly when we went to a nearby lab for the blood work. I'm hoping that will get easier for him with time/experience.

Matthew will continue the GFCF diet, his daily supplements, and will begin DMSA transdermal chelation this month. If I hadn't done so much research on this topic I would have been scared/said "no way", but I am confident in what we're doing and excited to start the heavy metal detox process. We will apply the cream to his arms (or feet, or back) over a 3-day weekend twice per month. That's it...pretty simple...no suppositories, no oral meds, no IV's. It is the least "invasive" way and I am very comfortable starting out with this low/slow method. Eventually we might switch over to the [Andy Cutler] oral method, but let's just try the cream for now and see what we can pull! We'll be checking his blood (for kidney/liver functions & mineral levels) every 2 months. We'll also keep an eye on his gut yeast issues b/c that tends to flare during chelation (but less so with the transdermal). I bought some Yeast Aid from Kirkman's and have a prescription for an anti-fungal in case we need it.

Special Olympics "Young Athletes" Program

2008-08-02T21:20:00.028-04:00

Matthew had his first session of the Young Athletes program today. This is a free program that meets for almost 3 hours every Saturday in August. (Today he only lasted 1.5 hours, but that's ok.) Matthew had a great start...he loved dancing to the warm up music and wasn't shy about going into the center of the circle.

Then the kids (who are aged 3 to 7 years) were broken into groups and sent to one of six stations: soccer, baseball, track, obstacle course, bowling, and basketball. Matthew refused to participate in the basketball corner and ran around the gymnasium instead (as did a few other "explorers"). He was a little more interested in bowling and absolutely LOVED the obstacle course.

A pretty volunteer tried to get him to play baseball, but it didn't last long b/c there are sliding glass doors outside the gym and those are Matthew's favorite thing to watch (open & close). He never made it to soccer (he was pretty overwhelmed by then).

We did stay for the parachute activity, and Matthew enjoyed running underneath it but got frustrated when it came down and the kids had to get out. So we waited for him to stop fussing, offered him juice, and said let's go home. We wanted to leave on a positive note so he'll be excited to go back next week. I think this 5 session "camp" will be really good for him b/c he's with a group of 20 kids (plus their parents/siblings & camp personnel) and is being introduced to sports/new physical activities. (P.S. You can click on the 3 pictures to make them bigger.)

Boo-boo & Band-Aid Song

2008-07-29T18:38:00.009-04:00

Matthew fell on the sidewalk and skinned his knee on Saturday. Since then we have been putting a band-aid on it every night after his bath. I tell him not to touch it and that the band-aid will make his boo-boo better. He's been singing the commercial jingle: "I am stuck on band-aid brand and band-aid's stuck on me". Here's a video of him singing part of it...he was sitting on my lap so I was holding the camera at a weird angle and then he jumped off/stopped singing, but at least you can hear some of it. I didn't realize until we started recording that he had just just taken the band-aid off...for the first time in 3 days!

My Obsession: Pear Juice

2008-07-28T21:56:00.010-04:00

Matthew has yeast in his gut and I've learned from other ASD mommies that pear juice is the least of the "yeast feeders" (as far as juice goes). I send Matthew to preschool with juice for lunch and snacks, so I usually try to send him with 1-2 boxes (depending if it's a long or short day) and a sippy cup of 1/2 juice, 1/2 water for lunch. Let me tell you that pear juice is not easy to come by (unless you buy the Gerber kind in the baby aisle...but I prefer the organic).

We have 3 Whole Foods stores nearby that I frequent for his GFCF foods. Today I hit the jackpot in Fairfax...pear juice boxes! As you can see in the pic, I now have 48 of them...woo-hoo! The last time I went there they didn't have any, and now they don't b/c I cleaned them out! And none of the grocery stores carry pear juice in bottles anymore...what's up with that?! So if you ever see pear juice (any brand), let me know b/c I'm always on the hunt!

"Secret Ingredients" that = Gluten & Casein

2008-07-26T15:23:00.014-04:00

A friend from the GFCFKids Yahoo Group emailed this list. It comes from The Kid-Friendly ADHD & Autism Cookbook (which I have, but am still reading!). Matthew has been on the Gluten-free/Casein-free diet since December. It is an on-going learning process and now with this new info, I need to check the labels on all his food (once again) to make sure we are still "legal"!

Gluten: wheat berry, couscous, flour, graham, semolina, durum, bran, bulgur, cracked wheat, rusk, oat bran, oat germ, oatmeal, oat flour, rolled oats, malt, starch, barley pearl, rye starch, hybrid of wheat and rye, species of wheat, ancient wheatlike grain, mixture or oat, malted drinks, ovaltine, postum, beer, ale, some grain alcohols, some artificial colorings & flavorings, caramel coloring & flavoring, confectioners sugar, syrup (unless 100% maple syrup), soy sauce, worcestershire sauce, ketchup (unless organic), dextrin, monosodium glutamate (MSG), citric acid, hydrolyzed plant protein (if wheat), modified food starch, malt (barley), canned soups, bouillon, powdered broth, imitation seafood & bacon, processed cheese spreads, pudding, mashmallow cream, stuffing mixes, breading, bread crumbs, gum, glues, binders & fillers, play-doh, school glue.

Casein: Mammal milk, buttermilk, evaporated milk, yogurt, kefir, cream cheese, sour cream, cream dressings, ice cream, sherbert, cheese, curds, cottage cheese, whey, butter, canned tuna, nondairy creamers, whipped toppings, salad dressing, bakery glazes, breath mints, fortified cereals, high-protein beverage powders, infant formula, nutrition bars, processed meats, some nutritional supplements, milk solids, lactose, galactose, lactalbumin, lactoglobulin, caseinate, lactobacillus (if not dairy free), calcium caseinate, galactose, hydrolyzed milk protein, hydrolyzed vegetable protein, lactalbumin, lactalbumin phosphate, lactate, lactic acid, lactoglobulin, lactose, magnesium caseinate, potassium caseinate.

First OT Session

2008-07-17T11:38:00.012-04:00

Matthew went to his first OT appointment yesterday. He will be going for 1 hour per week. The therapist is very nice and knowledgeable. She immediately noticed Matthew's toe walking and hypotonia. After playing with him and doing some tests she said he is "gravity challenged", has motor planning problems, and is tactile defensive. She will focus on gross motor activities and core/upper body strengthening during his sessions (and give me ideas for home).

Matthew's favorite part of the session was jumping on the mini-trampoline. His least favorite part was having her put a dollop of lotion in his hand and then rubbing it on his arms...he didn't like the feel of the lotion or her light touch, so to combat that we will do deep pressure. She said his fine motor skills are age appropriate and was impressed with his attention span. The session went well and it's at the same clinic Matthew used to visit for speech so he is familiar with it and was very excited to return.

Updates: Summer School, Lab Results, EEG, OT

2008-07-10T22:24:00.033-04:00

Matthew started summer school this week (they call it Extended School Year). He'll be going to his usual preschool autism class for 20 hours/week for five weeks. In addition, he is a student in the PAC Beginning Hands-on Training and for that he stays an additional 2.5 hours per day (for 5 days)...we volunteered to do this as it helps train teachers.

We received the results of his Urine Toxic Metals test (we sent a sample to Doctor's Data). The heavy metals Matthew scored higher in are Nickle, Lead, and [the dreaded] Mercury. (A hair test a few months ago showed that he also has high Arsenic, Antimony, & Tin.) We go to see his DAN doctor in August...I think it might be time to start detox/chelation.

I am in the process of getting Matthew signed up for a 24 hour video EEG at Children's in DC. We need to do this to hopefully rule out seizures. He has staring spells which are common in kids with autism, but sometimes absence seizures/petit mals grow up to be grand mals and we need to know in order to control that. The worst part will be attaching the many leads to his scalp...from what I hear they attach them with a stinky cement and they're hard to remove. Matthew has sensitivity issues so I dread having to hold him down for 10 minutes while they put them on. He hates people touching his head so this will not be a fun experience for him.

Lastly, we got word from the Chesapeake Center that they hired a new occupational therapist and b/c we were at the top of the waiting list (we've been on it since last August) Matthew will start OT next week, for 1 hour per week. We will finally get that sensory diet we were promised by Early Intervention 11 months ago! :)

New Train Table!

2008-07-06T18:56:00.009-04:00

I did it...finally bought Matthew a train table. Matthew received a GeoTrax train set for his birthday last March, and since then it has been sitting on the living room floor. Ever since the first time Matthew went to Peter's house, he has been talking about his train table...sooo, we are keeping up with the Mankins :) and now have a train table! John put it together like a champ and Matthew is using it. We can't wait to have Peter come check it out!

Fernandez Family Visit

2008-07-06T17:42:00.012-04:00

Long-time Navy buddy Ed Fernandez came to visit with his wife Karen and kids on Saturday. Matthew had fun playing with 4 year old Daisy and her 2 year old brother Alex. Daisy was quite a little charmer and complimented me on several things (such as the "lovely foot stool" in the bathroom)...did I mention she is only 4?! The kids had fun running around the backyard, playing on the swings, and watching a Care Bears movie. I never knew boys would be into Care Bears but Matthew LOVES them...especially Wish Bear. It was great seeing everyone.

Fun With Peter & Emma

2008-07-03T17:37:00.012-04:00

Today we had a play date with Peter and his sister Emma. Most of it was spent outside in the backyard playing on the swings and with bubbles (thanks Kathy!). We did go inside towards the end to have a quick snack and play with trains (you just can't have Peter and Matthew together without trains being involved!). I think I might have to break down this weekend and buy Matthew a train table...I saw one on sale at Toys R Us for $79.

Won A Contest!

2008-07-03T14:27:00.010-04:00

I am the proud winner of the GFCF Poop Blog contest. As a result, Matthew will be receiving a month's worth of free diapers/pull-ups and we are very grateful for these! Check out the website (warning: pictures of kiddie poop) and/or Tori's other blogs:

http://gfcfpoop.blogspot.com/

http://gfcfblog.blogspot.com/

http://lend4health.blogspot.com/

Matthew's Friend Camryn

2008-07-01T15:13:00.025-04:00

Matthew has a friend named Camryn (she has known Matthew since he was born!). We saw her last week during our very brief visit to Chesapeake. Camryn is 4 and as you can see in the pics, she is gorgeous! Matthew had fun playing "elevator" with her (one of his obsessions), playing with toys in her room, and watching Bambi (he loves this movie). Camryn was a great hostess...I wish our families lived closer so we could spend more time with them!

Matthew's Friend Peter

2008-07-01T10:40:00.022-04:00

Matthew has a few friends but the one he talks most about is Peter (he says "go to Peter's house"...see video below). Peter is in Matthew's class but will be heading off to kindergarten soon. He is 5 years old and has a super cool train table with LOTS of trains that Matthew loves to play with. We are looking forward to the next play date!

Pirate's Cove Water Park

2008-06-23T20:12:00.010-04:00

Yesterday we went to a pirate-themed water park. It has a 24-foot high play structure with a 300-gallon dumping bucket, water slides, and waterfalls. It's close to our home and a good introduction to water parks (geared towards kids 3-6). Matthew enjoyed it until he went down the slide and went under water. Due to his sensitivity issues, he has an aversion to getting his face & ears wet. After that he kept repeating "go home, got to go home" so we left. We will try again in a couple weeks.

Afternoon @ Pohick Bay Park

2008-06-19T17:50:00.080-04:00

Today we took our first trip to the Pohick Bay Regional Park which is off the Potomac River and only 8 miles from our house.

Matthew saw a deer ("Bambi's mommy") and some baby catfish (that a boy caught and put in a bucket).

He walked and sat on the dock and then played in the sand and threw rocks in the water.

I think if he had a bathing suit on he would have gone in the water! Since the park is so close and he enjoyed it so much we will be going there often.

Here's a short video...

End of School Year & New School News

2008-06-16T08:47:00.009-04:00

Matthew had his last day of preschool on Friday. He's off for 3 weeks and then returns for 5 weeks of summer school (4 hours per day). He will be attending a new school in the Fall. It is the same PAC program but in a different location. It will be a transition for him, but we hear the school has a good reputation and one of his classmates will also be transferring.

The teachers at his current school made this video to be shown at a potluck dinner for all the preschoolers and their families. We had terrible storms that night so the dinner was cancelled, but Matthew's teacher sent a copy of the video home and Matthew LOVES to watch his friends. It's a 6 minute video and most of Matthew's "close-ups" are during the first song. (He's the only blond boy with glasses so it's easy to pick him out!)

P.S. All of the children in the video either have the "developmental delay" or "autism" label. They are a great group and we will miss them!

Number Two Nursery Rhyme

2008-06-13T19:49:00.008-04:00

Here's a video of Matthew reciting a nursery rhyme. It's from the Baby Einstein Numbers Nursery video and the language cards that go with it. Matthew has it memorized...now we just need to work on pronunciation! Listen carefully!!!

"Call us a couple. Call us a pair. There are two of us, and so we share. Two apples and two lollipops, two pickles and two red gumdrops. We share two hugs b/c we're friends - on one the other can depend."

Green Our Vaccines Rally - "Too Many, Too Soon!"

2008-06-10T13:49:00.041-04:00

Last Wednesday (June 4th) was the Green our Vaccines Rally in Washington, DC. Speakers included: Jenny McCarthy, Jim Carrey, Robert F. Kennedy Jr., Dr. Jay Gordon, Dr. Jerry Kartzinel, and Dr. Boyd Hayley. More than 40 autism and environmental organizations supported their efforts and an estimated 8,500 participated. Every state was represented including supporters from Mexico, Canada, and the Philippines.

I was really looking forward to marching but became sick the night before and ended up staying home in bed...wishing that I was there in my green shirt holding up a picture of Matthew. I want to thank the 8,500+ people who rallied to demand that our government take the neuro-toxins out of our children's vaccines. Toxins such as mercury (thimerosal is still in 11 FDA-approved shots), aluminum, ether, antifreeze, formaldehyde...the list goes on & on.

For the record, I am not anti-vaccine, just anti-the poisons they have in them and -the schedule that is pushed on unknowing parents (children receive 36 shots by the time they are 3 years old). Before Matthew was diagnosed with autism, I had no idea these toxins were in his shots. IF I had known, I would have used an alternate (delayed) vax schedule with one shot at a time. I also would NOT have given him Tylenol before and after each vaccination (as our peds advised) b/c acetaminophen reduces glutathione which the body needs to detox.

Here are a few links with news coverage and a blog with some excellent pictures from the rally. Please take a moment to look at them...

http://abcnews.go.com/Video/playerIndex?id=4995883

http://www.myfoxdc.com/myfox/pages/Home/Detail;jsessionid=1E14C6AE3818087A676F99DCB6577784?contentId=6698310&version=2&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1

http://www.cnn.com/video/?/video/showbiz/2008/06/04/bts.carrey.mccarthy.vaccines.cnn

http://adventuresinautism.blogspot.com/2008/06/it-was-good-day-in-dc.html

New Sound Sensitivities

2008-05-28T15:30:00.016-04:00

Over the last few weeks, Matthew has developed sound sensitivities (which he's never had before). He screams/cries and shakes uncontrollably when he hears certain noises such as a neighbor using a saw, his ABA therapist deflating a balloon, and today her cell phone going off on vibrate mode. Usually he doesn't give an explanation, but today he told her it was a bumble bee going to bite him. After it went off he was petrified of her bag so she took everything out and put the bag on her head to show him it was safe but when we tried calling her cell later he freaked out again. He even got upset when the phone played a song. So now Matthew is scared of her cell and says "bye sound" to make it go away. Anyone out there have experience with this? (P.S. She didn't want her face in the pic.)

Memorial Day Weekend

2008-05-27T10:15:00.030-04:00

Matthew walked for the first time yesterday, six days after his fall. I sent him to preschool (with his stroller) today. It's one of the 3 "long" days (9:10-3:30) so it will be interesting to hear how he does.

Yesterday was Memorial Day, a day of remembrance for those who have died serving our country. Thank you to all our service members and their families! We spent a quiet day at home. We cooked on the grill and ate outside...the weather was perfect. We had intended to take Matthew to the pool but decided not to since he is still unstable on his foot and didn't want him to slip on a wet surface.

On Sunday, we took Matthew for a ride on the Metro (= his favorite thing to do). We were just going to ride the train and not get off but we needed to make a "pit stop" so we got off at the Smithsonian http://www.smithsonian.org/ and went to the Natural History museum. I have to laugh b/c some people travel from afar to visit these museums and we go simply to use the rest room! On the way out we saw thousands (not an exaggeration) of motorcycles. They were the Rolling Thunders..."an annual motorcycle rally that is held in DC to call for the govt's recognition and protection of POW's and MIA's. About 400,000 vets roar across the city as a tribute to American war heroes." Funny how when it comes to clowns and parades we always happen to be in the right place at the right time! The motorcycles were very loud and I was afraid Matthew might have another sensory overload attack, but he just sat quietly and watched them go by.

Matthew Fell & Injured Ankle

2008-05-22T09:54:00.011-04:00

Tuesday night Matthew fell down the stairs off the kitchen onto the hard wood floor in the family room and cannot bear weight on his right foot now. When he tries to stand up he falls and cries "boo-boo". I took him to the ER. He had x-rays which showed no fractures but they think it's a bad sprain (they're not exactly sure b/c he can't tell us where it hurts). I have to give him 250 mg of Motrin every 6 hours and it if doesn't get better in 2-3 days we'll need to see our pediatrician or an orthopedist. Since he can't walk I carry him everywhere...the stairs are the hardest b/c he weighs 40 pounds and my wrists are shot from a previous injury. He definitely won't be in school for the next few days. I really hope he gets better soon and that we won't have to see a specialist. Please keep you fingers crossed!

Terrifying Train Tunnel

2008-05-17T17:01:00.012-04:00

We took Matthew to Burke Lake Park, a local park that has a train that runs through it. Matthew went on this ride several times last summer and while he didn't love every minute of it, he surely didn't do what he did today. There is a dark tunnel that the train goes through twice and Matthew totally freaked out both times. He shook uncontrollably (like a scared dog during a terrible thunder storm) and held his breath while going under the first time. The train looped around and we warned him we were going through again...he shook/bobbed and had a horrible expression on his face. It was very scary for us b/c Matthew has a hole in his heart (VSD) and has had absence seizures so we were afraid he might have a seizure or a even heart attack. The weird thing is, he's been through tunnels on the Metro and they don't phase him at all. John says maybe it's b/c we were in the open air, it was very dark, and the horn/whistle were blowing loudly. Needless to say, we won't be going back there. This is the pic I took before we reached the tunnel.

Got TINGS??!

2008-05-16T13:32:00.015-04:00

I went upstairs to get dressed (I had laid out my clothes ahead of time so all I had to do was throw them on) and left Matthew alone in the family room for 5 minutes and this is what I found: Matthew had opened the kitchen pantry door, climbed up to the 2nd to top shelf, grabbed the Tings bag, opened the zip lock bag they were in, removed the chip clip, dumped the contents onto his plate, and began eating. You cannot leave this child alone for one minute! I thought I was being "safe" by giving him juice, turning on PBS Kids (Clifford), and dead-bolting the doors. Matthew obviously has an addiction to Tings. They are similar to Cheetos but without the cheese (he's GFCF) and are "natural crunchy corn sticks" made by Robert's Gourmet. They are pretty good but I wouldn't eat them for breakfast!

Celebs with Kids on the Spectrum

2008-05-13T18:10:00.008-04:00

I read an article today about celebrities who have children with autism. The most famous appear to be: Sylvester Stallone, Doug Flutie, Dan Marino, Ernie Els, Jenny McCarthy, Holly Robinson Peete, and Toni Braxton. These celebs work hard to raise awareness and research funds for ASD. John Travolta also allegedly has a son with autism but he and his wife Kelly Preston will not admit it and may be denying him treatment because of their beliefs in Scientology. The funny thing is that John's brother (Joey Travolta) produced a documentary on autism...I wonder if that was his way to get his brother's attention. Whatever Jett Travolta’s diagnosis, I hope he is getting the services and education he needs. Having a child with autism is NOT a shame, but doing nothing to help him is.
P.S. Notice Jett toe walking in the picture?...he is also non-verbal.

Happy Mother's Day!

2008-05-11T17:10:00.005-04:00

John and Matthew took me to a special lunch at the Army-Navy Country Club in Arlington. It was a nice buffet and Matthew was on his best behavior and even wore a tie! Hope all the mommies had a wonderful day!

National Train Day @ Union Station

2008-05-10T15:24:00.010-04:00

Today we took Matthew to Union Station in D.C. for National Train Day. Amtrak provided magic shows, arts & crafts, and live music for the kids. Matthew had fun watching the model trains and received a goody bag with lots of neat stuff including a commemorative wooden train whistle.

Matthew Rode a Horse!!! :)

2008-05-04T16:20:00.022-04:00

Today we went to an open house at Simple Changes in Lorton, VA. (Here's a link to their website: http://www.simplechanges.org/index.htm) Matthew rode a horse named Kali and loved every minute of it. The riding center is 7 miles from our house and I learned about it via an email from our local ASA chapter. Matthew was not afraid to touch the horse on the nose and gladly let a stranger put a helmet on him and lift him up onto the horse...it was amazing! Here's a short video and some pics. The center offers therapeutic riding sessions for kids 4 and up and hippotherapy for kids 2 years & up. We're going to try to get him into the summer session but the website says they have a long waiting list. In any event, it was a great experience for him and on the way to the car we ran into some clowns...they seem to be everywhere these days! Then we drove a few miles down the road to the Mason Neck State Park where Matthew had fun at the playground and went down his tallest slide to date. It was an exciting afternoon!
ETA: we just got a call from the center, we entered a raffle and won a $85 massage!

Fun with Daddy at the Pentagon

2008-04-24T20:34:00.004-04:00

Today was "bring your child to work day" at the Pentagon. Matthew and I took the metro in and met John's co-workers (Matthew fell in love with Kate), ate lunch in the cafeteria, and participated in the craft activities in the center courtyard. Matthew made a very cool decoration for his room and even met some clowns!

First Class Picture!

2008-04-24T17:06:00.013-04:00

Here is Matthew's (first ever!) class photo. There are two preschool autism classes at his elementary school...6 students (ages 2-5), 1 teacher, and 2 aides per class. His male aide was absent on picture day so the regular female substitute sat in.

Other news: I received approval from the principal to work as a volunteer in the kindergarten autism class. I have been twice so far and really enjoy helping out and spending time with the kids...they are very sweet.

10 Things About Matthew

2008-04-13T09:54:00.020-04:00

I was asked by GFCF Mommy to play a game and come up with 10 great things about Matthew. Here's the link to her blog http://gfcfmommy.blogspot.com/ and here are my 10 things (which I did # but Blogger made them bullets!):

Matthew is incredibly loving and sensitive. He loves to be held and kissed, and says "I need a hug" when he's feeling down.

Matthew has a wonderful sense of humor and laughs when other people laugh.

He is a total "ladies man". Matthew loves looking and smiling at females (of all ages) and they often melt when they see his big blue eyes and dimples!

Matthew loves to sing and dance. His current favorites are Itsy Bitsy Spider & the Chicken Dance (learned at preschool).

Matthew still enjoys going for long walks in his stroller (especially with Ni-Ni). He likes to stop at every stop sign and never hesitates to say "hi" to strangers.

He loves to finish sentences such as I love ... "YOU!" and 1, 2, 3... "GO!"
Matthew reads signs while riding in the car (examples: McDonald's, Kohl's, Target, Wal-Mart)...his ped says he's recognizing the colorful logos, but we call it reading!

Matthew has a great memory. He recites numerous lines from books and videos using real words mixed with his jargon.

He is fascinated by elevators. Matthew has created his own at home using the bi-fold door on the linen closet...and makes appropriate sound effects to go with it!

Matthew enjoys going to restaurants like Chili's and Cracker Barrel...does anyone know if their french fries are GFCF???

Thomas & Friends Play Date

2008-04-12T17:57:00.007-04:00

Today we took Matthew to a Thomas & Friends "play date" at Toys R Us. Matthew spent time with about 15 other kids and listened to a story, played with a huge wooden train set, and colored pictures. At the end of the session, the children were given Thomas trading cards and several coupons. It was a good opportunity for Matthew to interact with some NT (neuro typical) peers and he had a great time!

Thought-provoking Shopping Experience

2008-04-08T11:59:00.025-04:00

I went to TJ Maxx in search of new puzzles for Matthew and clothes for me. While there, I noticed a teenage girl sitting on the floor in the shoe department playing with the laces and mumbling to herself. She was wearing a badge on a string around her neck so I thought she was an employee and that her behavior was a bit unusual but I moved on to the toy section. There I saw 2 other "odd" individuals - one was staring at the baby toys and the other was touching the board books...again, both had badges and I thought, "wow, TJ Maxx has several special employees working here...good for them, but I think there might be some productivity issues". Then, while I was looking at the shirts, a woman came up to me and asked if the shirt I found was on clearance...yada yada. She was very friendly and I stood behind her at check-out. I noticed she was wearing a badge which said Fairfax County Public Schools. On my way out of the store, I saw the 3 teenagers plus 3 others boarding a school bus with that lady. Then it all made sense...she was the guide and they were the special needs students out on a field trip. Maybe it had something to do with a "life skills" class but why was there only 1 adult and why was she shopping for herself while the rest of the kids (they looked like they were about 16 years old) were sitting on the floor or staring at the baby toys? What if one of the kids ran out the door into the street or broke something in the housewares department and hurt themselves? What exactly did they learn during this exercise...that you go to the store to play with shoe laces?

It made me wonder, is this the kind of field trip Matthew will go on in the future? Will someone look after him and teach him something that will be useful in the real world? I need to start teaching him "life skills" ASAP!

Two Wonderful Documentaries

2008-04-03T11:28:00.019-04:00

I love BOTH "Autism: The Musical" and "Beautiful Son"!!!

HBO has been showing the Musical often and I always stop to watch a few minutes of it (again) b/c I am fascinated with Lexi and adore Wyatt. In case you haven't heard, it is "the story of five autistic children, their families, and the dynamic woman who leads them to defy expectations by writing, rehearsing, and performing their own musical."

I heard about Beautiful Son ("a documentary about one family's struggle to heal their son from autism") a few months ago and had been eagerly waiting for PBS to air it. They showed it last night at 11pm (I was tired but stayed up) and it was excellent and the cinematography is breathtaking. I was quite happy to see our DAN doctor in it...she is also their DAN and yes, they actually travelled from Hawaii to Virgina to see her!

Here's the link: http://www.beautifulson.com/film.html

If you haven't seen these films, please look for them...both are available on DVD. Even if you don't have a loved one with autism, the documentaries are very well done, informative, and will touch your heart.

April 2nd is WORLD Autism Awareness Day

2008-03-31T10:24:00.004-04:00

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139 which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. The UN resolution is one of only three official 'disease-specific' United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The WAAD resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and intervention. It further expresses concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

Let's use this day not only to promote autism awareness, but to celebrate our children and their special talents.

We love you Matthew! :)

Egg Roll at the White House

2008-03-25T11:46:00.011-04:00

John spent the night outside waiting in line to get us tickets to the annual Easter Egg Roll. We had extra tickets so we gave them to our neighbors, Wendy and James. We took the Metro into the city and Matthew loved the train (and the elevators too)! We were in the last group to enter..they closed the gates at 2pm. We had until 3:30 to explore the activities on the White House lawn and there were so many options! They had the traditional egg roll, an egg hunt, face painting, egg decorating, 12 different stage performances, about 50 strolling characters (i.e. Clifford, Snoopy), an animal stage, magicians, and reading nooks. It was a busy place and lots of lines. We saw many of the characters, attended a performance (Steve Songs), and participated in the egg roll. We also (by pure chance) saw the President, Condoleeza Rice, and Barney Bush (see post below). Matthew was very well behaved and enjoyed himself. We were given a PBS Sprout framed polaroid of our meeting with Curious George and a nice cardboard framed photo of our family standing (on a platform) in front of the White House...the line for this had actually closed but they let us in b/c John was in uniform. On the way out, they gave us a commemorative poster and a goody bag with a coloring book/crayons, postcards of the White House pets, a Maisy sticker book, "My American Journal", and a special wooden Easter egg. It was a very fun, exciting, and memorable event!

Celebrity Sightings!

2008-03-24T22:04:00.006-04:00

I will post several pics from the Egg Roll at the White House today, but first I wanted to post the pics I took of the President, Condoleeza, and Barney the dog! We noticed that Barney was playing on the lawn so we snuck over to see him and then the President walked by and we were like "OMG take a pic, take a pic!" So I grabbed my camera and zoomed in. (You can click on the pic to get a better view.)

Happy Easter!

2008-03-23T21:21:00.004-04:00

Happy Easter! John's mom is in town so we took her to brunch at the Army-Navy Club in Fairfax. They held an egg hunt for the kids and Matthew had lots of fun...but wasn't too fond of the big bunny! Then we came home and had our own egg hunt.

Tomorrow we are going to the Egg Roll at the White House so I'll post pics of that expedition as well. It should be exciting...the First Lady and Elmo will be there! :)

Peeps Show

2008-03-22T08:19:00.008-04:00

I saw this on The Washington Post (our local newspaper) and thought it was cute. Peeps are one of the few candies Matthew can eat due to his GFCF diet but he's not really into them...other "legal" candies include: Starbursts, Skittles, and Smarties. They held a peeps diorama contest and have the top 37 (out of 800 entries) on-line for you to view and vote on. Some are really funny...I like the plumber's crack, American Idol, and Sesame Street themes. Check it out: http://www.washingtonpost.com/wp-dyn/content/gallery/2008/03/21/GA2008032101983.html?hpid=artslot

"Autism: The Musical"

2008-03-21T13:58:00.013-04:00

I haven't see this yet but I watched an interview on The Early Show and it looks interesting. Follow the link below to watch the two video clips...the second is a continuation after the commercial and has comments from two of the cast members. (BTW, Henry is the son of Stephen Stills of Crosby, Stills & Nash.) I was impressed with their verbal skills, especially Wyatt when he was talking about bullies at school. I dread Matthew having to deal with bullies in the future...maybe we'll enroll him in Karate so he can "go Kung Fu" on them if necessary! :)

http://www.cbsnews.com/stories/2008/03/19/earlyshow/main3950206.shtml

ETA: you can watch the documentary on-line at: http://www.hbo.com/docs/programs/autism/video/

Preschool Welcome Song

2008-03-17T15:17:00.008-04:00

The last week or so Matthew has been singing a new song at the kitchen table. I emailed his teacher b/c I had never heard this one before and she sent me the lyrics. Here's a video of Matthew singing the Hello song and the lyrics so you can sing along!

1. Arms up
2. Hugs
3. Kisses
4. Count: 1,2,3
5. Sing:
“Our busy day has started. We must say hello. Hello, hello, and we must say hello.
Who came to school? Who came to school? With all the other boys and girls who came to school?”
6. “I did!"

"More cake"...

2008-03-16T10:12:00.010-04:00

Here's a close up of the GFCF Elmo birthday cake (made by mommy & daddy)...Matthew really likes it (you can tell by looking at his pants!) and keeps asking for "more cake"...and yes, he had leftover cake for breakfast!

Matthew's 3rd Birthday Party!

2008-03-16T08:56:00.004-04:00

We celebrated Matthew's 3rd birthday on Saturday. His b-day is actually on Thursday but we wanted to have the party before the school spring break as some of the families plan on going out of town. It was a beautiful day and we spent most of the time in the backyard. The party had an Elmo theme and Matthew looked very cute in his little red shirt. We made a GFCF cake which turned out pretty good. The kids and their parents were here for about 2 hours. We opened presents after Matthew's nap and he received some really COOL stuff...thanks everyone! Here's a video - I've been sick lately so that's my hoarse voice singing in the background...

Matthew's New Coloring Desk!

2008-03-03T16:36:00.013-05:00

Last night I was perusing the "free stuff" section of CraigsList and found an ad for a child's desk. It looked really cool (it has a place for crayons and a cup holder!) so I sent an email saying we were interested and could pick it up ASAP. The generous lady wrote back and said come & get it, so John jumped in the car and took off! The desk is in almost perfect condition and Matthew enjoys sitting in it to color. The pic shows his first official coloring book experience (Curious George theme) and he did really well. There were a few times when he actually stayed in the lines!

Autism on Larry King Live (CNN)

2008-02-28T10:04:00.010-05:00

Last night Larry King aired The Heartbreak and Hope of Autism. He was joined by Jason "J-Mac" McElwain, who inspired the world with his incredible shot-making at a high school basketball game (scored 20 points in the last 4 minutes!), and who recently published a memoir. Holly Robinson Peete, Doug Flutie, Toni Braxton, and DAN Dr. Jerry Kartzinel also joined the discussion. While I'm not a big LK fan, I thought he did a good job and salute him for continuing to air shows on ASD.

Mary Cassatt - La Toilette (1891)

2008-02-25T10:50:00.017-05:00

Mary Cassatt (1844-1926) was an American artist known as a "painter of mothers and children". Mary did most of her work in France where she met and painted with artists such as Monet, Pissarro, and Degas. She was the only American (and one of only three women) to exhibit with the Impressionists in Paris.

I love Impressionist art...especially Monet. I was looking at some prints on-line and came across this one. I remember studying Cassatt while doing my junior year abroad in France (1990-91). This one caught my eye b/c it reminds me of Matthew. I have to wash his feet every morning to remove the nightly Glutathione cream. I put him on my lap and wash them in a bucket with warm water. (It's a lot less time consuming than putting him in the tub while we are rushing to get ready for school!)

Hugh Who???

2008-02-20T19:38:00.014-05:00

These pics are cute...the next Hugh Hefner! (Watch out ladies!)

Matthew Dancing!

2008-02-20T10:26:00.007-05:00

Last night we were flipping thru the music TV channels and came across Party Favorites. Matthew immediately started "shaking his booty" so I grabbed the camera and here's the video clip...

"Whoops, I Sorry"

2008-02-19T10:44:00.011-05:00

Matthew has a new phrase: "whoops, I sorry". He says this when playing with Mr. Potato Head (which he loves) and accidentally knocks him over. It's very funny to hear...he must have learned it at preschool. He also likes to put both arms on one side of Mr. P and both ears on the other side!

Happy Valentine's Day!

2008-02-14T11:47:00.008-05:00

This is the "siggy" I created for my autism chat board...with 2 of my favorite pics of Matthew. Hope you like it & enjoy your day!

Pee-pee On The Potty!!!

2008-02-11T16:06:00.000-05:00

Matthew just made his FIRST pee-pee on the potty! It was while Jenn (his BCABA) was reading to him and a little trickle came out. We clapped and made a really big deal about it. I’m not sure if Matthew understood how momentous that was (he was more into the book) but he did it! Yay!!! :)

No More High Chair!

2008-02-07T12:32:00.000-05:00

Look at the BIG BOY sitting in his booster seat. Of course, he only stays there about 5 minutes before he starts yelling "git up!", but at least he's sitting at the table with us. Last night I made him organic sweet potato fries and chicken breast - thinking he would inhale the fries and leave the poultry - but he hated the fries and actually ate some of the chicken. Every meal is an "exciting event" at our house b/c you never know what Matthew will eat! (lol)

Super Giant!

2008-02-07T11:00:00.000-05:00

I just went to the new Super Giant near our house and I am very impressed. They actually had one side of an entire aisle dedicated to organic, gluten-free, and casein-free foods. If you had asked me a year ago if I would ever get excited about finding GF foods in a grocery store, I would have looked at you like you were on drugs, but it actually put a smile on my face. I saw a few brands there that I have only seen at Whole Foods.

The GFCF diet is still tricky for us (especially when trying to eat out), but we have found some staples that we know are "legal" and stick to those. I also started reading a new book that has lots of info on diet (and its effect on autism) and includes easy recipes so that will be helpful.

Daily Adventure

2008-02-07T10:34:00.001-05:00

Today I realized that five times a week Matthew and I go on a 10 minute adventure on the way to school. We drive by the Springfield mall, metro (see pic), hospital, a waterfall, and a lake with ducks before arriving at his school. He usually lists these as we pass and today he added a new phrase as we drove by the metro: "go pick-o daddy!" We had to pick up John there a few times last month when his car was in the shop and Matthew really enjoyed that, and now associates it with daddy being at work. I realized when you're not late and stressed (as we often are) you can take the time to appreciate the little things in life like our exciting 6 mile drive to school.

"Git Up"..."Outta Da Bed!"

2008-02-05T14:29:00.000-05:00

Matthew has recently begun saying a few 2 and 3 word sentences and that one has become his favorite. I hear it at 6am, in the late afternoon when I am trying to convince him to take a nap, and when I attempt to relax on the couch after dinner. Yes, it doesn't have the "cute factor" it did the first few times...but he is working to get his needs met so that is great progress. Some other good ones: "I want Elmo", "more cookies", and "daddy at work".

Yes, I'm a "Bio-Med Mom"

2008-01-31T14:48:00.000-05:00

Today it occured to me that I am in a new club...I'm one of the "bio-med mommies". What does that mean? Well, it's kind of hard to explain in one sentence but I'll try...I took Matthew to a DAN (Defeat Autism Now) doctor (who is a developmental pediatrican) and she ordered lots of tests (blood, urine, stool, hair) to look for underlying health issues, and based on the results of those tests prescribed meds (antifungals for yeast), vitamin/mineral supplements, and suggested the GFCF diet. Some people do not agree with this protocol and think we are needlessly "subjecting" our children to tests and treatments. That seems like a harsh judgment to me. The only tests that are painful for Matthew are the blood draws and we consolidate these to minimize stress. And the treatments are working...I have seen marked improvement since November.

Now, let me take a minute to discuss the controversial DAN docs. There are only about 600 of these physicians in the U.S. and their practices are considered alternative medicine b/c they do treatments that a typical MD does not. And yes, some of them are "quacks" and take advantage of parents desperate to help their children, but I have done my research and have confidence in ours and know of several others that are well-respected.

So, WHY am I a bio-med mom? Beacuse I am willing to try anything (as long as it is not dangerous) to help Matthew...to alleviate his symptoms and give him a better quality of life. There are some bio-med treatments like IV chelation and HBOT that sound scary to me and we will probably not do those. But I can't sit back and NOT try "alternative" treatments (like the diet and supps) b/c I feel that I owe that to Matthew. At the same time we are doing "traditional" therapies such as ABA - both at home and school.

What You Can Do Right Now...

2008-01-29T12:53:00.000-05:00

I just finished reading What You Can Do Right Now to Help Your Child with Autism by Jonathan Levy. I agreed with most of what he advised in the book, and while at times it seemed like a big advertisement for the Son-Rise Program, the true stories were inspirational. If I had unlimited funds I would take Matthew to the Autism Treatment Center of America in MA.

Here are the 10 techniques Mr. Levy suggests parents do right now to work with the child and draw them back into our interactive world:

"Don't React: How you respond to your child's behaviors can make all the difference. Learn why most people are ineffective in discouraging their child's problem behaviors and how you can do it differently.

Make Eye Contact a Priority: Understand why eye contact is vital to your child's development and easy steps you can take to help your child to look more.

Join with the Stims: A different and powerful approach to your child's self stimulating and repetitious behaviors.

Respond Differently to Crying: Most of us give children great reasons to cry and act unhappy. Learn to teach your child a more effective way to communicate with you and the rest of the world.

Give Your Child as much Control as Possible: Most children with autism are told "No" much of the time by their parents, teachers, and family members. Make interacting with people more attractive to your child by allowing him to do more of what he wants and moving against him less.

Focus on Your Attitude: A hidden factor in your child's development is how you feel as you work with him. Learn why this is the case and how to feel better, more of the time.

Work One-On-One in a Non-Distracting Room: Why school isn't the best place for your child to develop and grow. Understand the three main factors in a successful educational environment.

Be Dynamic with Your Child: Enthusiasm matters to your child's growth. Learn the three tools you can use to demonstrate energy, excitement, and enthusiasm.

Get More Language: There are three categories of language ability, which does your child fit into? Master techniques that will enable your child to improve her speech, whatever her current level.

Make Sure Food Isn't Part of the Problem: An explanation of dairy and wheat intolerances, and why sugar isn't helping your child. Also, how to introduce new foods so he actually eats them." (source: Amazon.com)

Autism Statistics

2008-01-23T17:01:00.001-05:00

I've been meaning to do a post on statistics for a while now, but today I saw a video clip that motivated me. The following info is to promote awareness, and if you ever get the chance, please push for legislation that requires insurance companies to cover the costs of therapy.

* Autism (considered rare before the 1990s) now affects 1 in 150 children.
* Boys are 4 times more likely to be diagnosed than girls.
* 67 children will be diagnosed today (a new case nearly every 20 minutes).
* More children will be diagnosed with autism this year than AIDS, Diabetes, and Cancer combined.

There is no "cure" for autism, but with early intervention and therapy our children can lead fuller lives. However, most insurance policies will not cover the costs. We are fortunate that Tricare (military health insurance) assists us with up to $2400 per month for ABA therapy (that's about 4 hours per week) and that our public school system offers a PAC (preschool autism class) program. Many states have programs that assist with costs, but children are placed on LONG waiting lists. We were told "at least a one year wait" for ST at the local children's hospital (so we went elsewhere) and have been on a waiting list for private OT since August. The therapists cannot keep up with the rising demand!

Pick A Potty!

2008-01-19T21:16:00.000-05:00

The time has come to begin potty training and we are trying to figure out which one to use. As you can see, we have 4 options (I inherited these from friends/found at consignment sales). From left to right: contestant #1 is the widest but the handles are low; #2 seems fine; #3 lights up, plays music, and flushes; and #4 is the insert option on the real potty (with a step stool...but Matthew has prob turning around on to sit down). So what do you think...what has worked for your little boy?

Artwork Extravaganza

2008-01-15T18:40:00.000-05:00

Matthew came home from preschool with 4 new masterpieces...hope you enjoy the pics! (We think the 2nd one is a rabbit.)

Fuzzy Bunny

2008-01-14T21:58:00.000-05:00

I found this masterpiece in Matthew's back-pack. It must have been today's craft at preschool. As you can see, he glued the cotton balls onto a picture of a bunny. Very cute...I taped it to the wall in the kitchen.

Whole Foods ~ Whole People ~ Whole Planet

2008-01-14T16:11:00.001-05:00

Today I went to check out the larger Whole Foods market in our area. That store is awesome...three times bigger than the one near our house. They have everything you can imagine (and free samples) and several places to sit down to eat...like a mini food court. I was in a hurry b/c I had to pick up Matthew from preschool so I was racing up and down the aisles looking for GFCF foods. I wish I had more time to explore their sushi and bakery departments. It's about a 30 minute drive so I probably won't go back for another 2 weeks, but next time I will plan on arriving early and eating lunch there. BTW, Matthew did not cry when I dropped him off this morning so I think those days are behind us. I believe he is enjoying preschool!

Umm, Eggs!

2008-01-13T10:32:00.001-05:00

Today Matthew did something he has never done before...he answered a question (unscripted). I asked him what he wanted to eat for breakfast and instead of ignoring me or babbling he said "umm, eggs!" I said OK and took him downstairs to make scrambled eggs. Of course he barely touched them but the fact that he asked for them is amazing. I also gave him banana, bacon, GFCF cereal (Puffins) and his juice concoction. He ate all the Puffins which I am happy about b/c the last time I offered them he wouldn't take one bite. (He is very picky.)

No Tears & A Drawing!

2008-01-11T17:58:00.000-05:00

Matthew completed his first full week of preschool today and for the first time did NOT cry when I dropped him off. I picked him up early, as I do 2x/week so he can come home for ABA with Jenn, and he was in a really good mood.

While Matthew was "playing" with Jenn, he drew me a picture (he's never used markers before) and after he made it he said "boat in the waddie" (he actually described what he drew) so Jenn wrote the title on the paper. I'm going to hang the masterpiece on the frig.

New Meds/Supplements

2008-01-10T21:12:00.000-05:00

Matthew finished his one month course of Diflucan (to kill the yeast in his gut) and began Nystatin today (another anti-fungal but not as strong). This is the first liquid medicine that he refuses to drink from the syringe so I mix it in his juice. We have also started him on DMG with folic acid/B-12 and will begin the L-carnitine, P5P, CoQ 10, and lithium cream soon...we add a new supplement every 4 or 5 days so if he has an adverse reaction we'll know which one is the culprit.

Future Rock Star

2008-01-10T14:25:00.000-05:00

Matthew received an electric guitar from Dorothy, his step-great-grandmother. He has always loved music and for a while he played his toy drums but now it is all about the guitar. (I think he was inspired by Elizabeth on Spectrum Connections.) He was so desperate to play a guitar he was using the fake one attached to a stuffed animal so we knew we had to find him one. Word got out and now he has a guitar! It even lights up and plays a few tunes. It's a cool toy and John has been playing it after Matthew goes to bed!

Kohl's -- "That's More Like It!"

2008-01-08T16:36:00.000-05:00

Today I learned the danger of sending Matthew to school...shopping! Yes, retail therapy. I dropped $100 at Kohl's without even trying and everything I bought was on clearance...60-80% off (that's almost free, right?!).

Seriously, now that Matthew is away from me 27 hours per week I have so much more free time. I plan to use it wisely and read books on autism, join a support group, continue to chat on-line with my autism board, read autism blogs (do you notice a theme?), and oh yes, diet and exercise to lose lots of weight (fun!). I have also signed up to be a volunteer at his school, not in his class but in the main office and as an instructional assistant. Maybe I can sneak a peak through his classroom window while I am there!

Diaper Issue

2008-01-08T14:49:00.001-05:00

Matthew started preschool last Wednesday and the teacher/aide there change his diaper standing up b/c he refuses to lie down for them. Up until Friday he has always laid still on the table for me but now he only wants to be changed standing up. I have a difficult time doing that (the diaper goes on crooked and often ends up leaking) and due to rash issues/previous surgeries for abscesses, I really have to inspect his privates and slather them with A&D ointment.

So now that he has learned the "new way" at school, how am I supposed to get him back to doing it "our way" at home without a major tantrum and tears? Any advice and/or mommy tricks would be appreciated.
* Update: I am now changing him standing up! (I'm getting better at it.)