Happy New Year!

We returned home today. I am exhausted so I will post later, but while I was on-line I wanted to say:

Happy New Year! * Bonne Année! * Feliz Año Nuevo!

Sticking to GF -- Foods to Avoid

We've been legally GF for one week now. So far so good, but we're leaving for TN on Wednesday afternoon and I am worried about "infractions" during our visit. The following info is for anyone interested in a gluten-free diet...it is also a reminder of the hidden foods we need to avoid during the trip:

Common foods containing gluten:
Wheat
Rye
Barley
Oats (sometimes contaminated with gluten)
Bulgur wheat
Tabooli
Couscous
Bread
Pasta/Noodles
Pancakes
Baked goods: cakes, muffins, cookies
Crackers
Flour

Hidden sources of gluten:
Baking powder
Barley malt
Bouillon cubes
Hydrolyzed plant or vegetable protein
Meats: lunch meats, hot dogs and sausages, self-basting turkeys
Miso
Monosodium glutamate (MSG)
Mustard powder
Packaged foods
Soy sauce
Soba noodles
Textured plant protein (TPP)
Textured vegetable protein (TVP)
Misc. Foods (some have gluten so check labels): curry powder, most white pepper, dry seasoning mixes, gravy mixes and extracts, meat condiments, catsup, chewing gum, snack bars, pie fillings, baked beans, salad dressings, sandwich spreads, muesli, instant coffee, breadcrumbs, vanilla and other flavorings made with alcohol, most dips.

2007 Christmas Card

I finally mailed the Christmas cards!!!

I created them on-line this year. I ordered 60 of them and used them all. If you do not receive one that means I don't have your home address...so email it to me if you want to be on the mailing list!

HAPPY HOLIDAYS EVERYONE!!! :)

P.S. Thanks for all the cards we received. I have them on display in our family room. I especially like the photo ones b/c after New Year's I post the pictures on our frig.

Abbreviations 101

We often use abbreviations when chatting on boards and posting on blogs. I thought the following list might be helpful for my readers. There are MANY terms and abbreviations that are used when discussing Autism...these are the ones I use daily:

ABA = Applied Behavioral Analysis (therapy method)
ASD = Autism Spectrum Disorder
DAN = Defeat Autism Now!
DX = Diagnosis
EI = Early Intervention
GFCF = Gluten Free/Casein Free diet

HFA = High Functioning Autism
IEP = Individual Education Plan
NT = Neurologically Typical ("normal" child)
OT = Occupational Therapy

PAC = Preschool Autism Class
PDD/NOS = Pervasive Developmental Disorder, Not Otherwise Specified
PT = Physical Therapy
SID = Sensory Integration Disorder
SPED = Special Education
ST = Speech Therapy

Matthew + Long Line = Meltdown

I took Matthew to the bank today because I had to cash two checks. The last time we went to NFCU he kept running away from me, so this time I put him in the stroller. Of course, it was crowded - it always is! We were only there about 5 minutes when he had his meltdown. There were at least 20 people in line ahead of us and I could see the line was not moving so we left. (I just couldn't take another public screaming session.) Going in, I had thought he would be ok because he had a paci, a cup of juice, and a small toy. I don't know what else I could have done to make him comfortable...at this point he just cannot tolerate waiting in line.

Crazy Old Man!

A crazy old man slammed into my car in the parking garage while we were leaving the hospital today. He must have been 90+ years old and was totally out of it. He hit my car while pulling into his spot, then backed out and went full speed ahead into the cement wall. He didn't even blink! I walked around to see if I had any damage and didn't see any so I got back in the car. I was trying pull out when the man opened his door (almost hitting me again) and then wobbled past me down to the elevator. Not once did he look at me, my car, his car, or try to apologize. He must have dementia or something. I just wanted to get away from him! Hopefully my car isn't messed up...I couldn't imagine trying to get this man's insurance info. He should not be allowed to drive!!!

Nutritionist Visit

I took Matthew to see a Nutritionist this morning. I had made the appointment months ago before we ever saw our DAN doctor or started the GFCF diet. She asked me why I was there and I told her I'm worried about Matthew not eating fresh fruits or any veggies, him not liking the milk replacements, and wanting to make sure I'm giving him a balanced diet. Well, she had never heard of a DAN and did not recommend GFCF (b/c there haven't been any official studies to prove it helps autism...even though thousands of moms swear by it). She simply advised me to give Matthew V8 juice, read the "Sneaky Chef", try Quinoa (another GF grain), and make fruit smoothies.

Great Eye Doc Visit!

Matthew did surprisingly well at the eye doctor today. I kept waiting for him to freak out and he never did! Our appointment was for noon but we didn't get called until 1pm. In the meantime, Matthew played with the toys in the waiting room and ate snacks. He did not fuss or ask to go to the "ki" (car). Then they called us back and the doctor came in two minutes later. Matthew sat on my lap in the examining chair and let the doc shine lights in his eyes and I kept thinking "who is this kid...where is Matthew?!" I guess we've been there enough now that it's no longer stressful for him. The doc said to come back for a recheck in 4 months. I asked if Matthew will eventually need surgery for the cross-eye and he didn't think so. I also asked if Matthew would need glasses for the rest of his life and he said he would probably outgrow them by puberty. I really like Dr Parelhoff...he's been practicing for 25 years and is wonderful.

Matthew's Preschool Visit

Matthew and I went to visit his preschool class today. He will begin on January 2nd. When we entered the classroom he was fine. Then I had to change his diaper b/c his leaked and his pants were wet. I did it on the changing table there and he refused to lie down but we managed and I had spare shorts (need to add pants!) in his diaper bag.

Then he went over to play with some toys while all 5 kids were lining up by the door. The teacher said it was time to go to the gym. So I tried to get Matthew to follow and he didn't want to leave the FP school bus (his favorite) so he started crying. We had to drag him down the hallway (with the bus) to the gym and for the next half hour he screamed and cried and only wanted to be held by me (standing up). Everything was new to him (the lights, smells, sounds, other children in his face) so he was very overwhelmed and out of his comfort zone.

We finally made it back to the classroom and he was still crying. I told him we were going to the car and he stopped, caught his breath, and said goodbye. The teacher said it was normal for him to cry and be upset and this would happen for at least the first week of school but it will get better. It is heartbreaking to watch but I know it will make him stronger and by the time he gets to kindergarten he will be a pro.

Last ST Session With Kim

Photo Sharing - Video Sharing - Photo Printing - Photo Books

No More Kim :(

This is a sad week for us..we said goodbye to Valerie yesterday and had to do the same with Kim today. Kim was Matthew's private ST at the Chesapeake Clinic. She only sees clients there on Tuesdays (b/c she does EI home visits the rest of the week) and Matthew will be in school all day on Tuesdays. The only times Matthew could do private ST is on Monday and Wednesday afternoons and unfortunately Kim is not available.

I brought my camera and took a short video (see clip above) and some pics. Kim had some new toys today and one of them was a headband with ears attached. Matthew really enjoyed pretending to be a dog. She also gave him a gift (holiday play dough, birthday candles, and a little cowboy). Thanks Kim...we will definitely miss you (and the elevator)!!!

We Met Charlie!

Today was a busy day for Matthew. He had his last session with Valerie (see post below), had ABA therapy with Jenn, and met Charlie for the first time. Charlie is 28 months old and is in the preschool autism class (PAC) that Matthew will join in about 2 weeks. He came to the house with his very nice mommy and younger brother Alex. Matthew and Charlie shared GFCF snacks, played, and watched a Spectrum Connections music therapy video. Charlie and Alex could not be any cuter and I have a feeling that Matthew and Charlie will be good friends...and their mommies too!

No More Valerie :(

Today was Matthew's last ST session with Valerie. He is losing his at-home services through Early Intervention (Infant & Toddler Connection) due to the fact that he is transitioning to the public school system. This is an older picture of Valerie & Matthew...I forgot to take one today. We will both miss her very much. Hopefully she will come visit us sometime and bring her "hay-go" (= play dough).

Started GFCF Today!

Today is the first day of Matthew being 100% Gluten-free/Casein-free. (Wish us luck!!!) Here's what he ate today:

Breakfast: nitrate-free turkey bacon, 1/2 of a "Foods by George" (rice) English muffin (they're big like biscuits) with Smart Balance Light, 100% apple juice mixed with water and supplements, Gerber freeze-dried apples and 3 bites of the organic applesauce. (Matthew doesn't like fresh fruits or any kind of veggie so we have to be creative.)

Morning Snack: 100% cranberry juice (mixed with water & supps) and 5 (tiny) EnviroKidz organic vanilla animal cookies.

Lunch: combined left over snack juice (he didn't the cran) with 100% grape juice (w/ water & supps), Wellshire Kids nitrate-free turkey-ham lunch meat, the other 1/2 of his muffin, 1 slice of Galaxy Vegan mozzarella flavor "cheese"...which he HATED so I gave him some left over organic turkey (from last night), and raisins.

Dinner: 100% grape juice (w/ water & supps), lean ground beef with Heinz ketchup, Tinkyada brown rice pasta shells with Smart Balance Light, Gerber apricots & mixed fruit (thankfully he loves this one), and he'll have "legal" rice crispie treats (I just made them) later for Dessert.

P.S. If you are wondering why he always drinks juice mixed with water, it is because he hates all the milk replacements. Someone recommended Pacific brand rice milk so I will try to find that one. We have tried several other brands and flavors but so far haven't had any luck. Will keep trying!

Going GF this Weekend

I had planned on Matthew going 100% Gluten-free starting tomorrow morning but things have been HECTIC and I haven't had time to go to Whole Foods (alone) to get all the "legal" foods. I tried to take Matthew there a few days ago but he had never been before and he went into sensory overload from all the smells (tons of fresh flowers), sounds (loud holiday music), & people (it was crowded and the aisles were packed). He had a complete meltdown so we went to Giant instead (and he was fine there b/c it wasn't stressful) but they don't carry most of what we need. So the GFCF diet will begin on Sunday morning!

IEP Meeting

John, Jenn (our BCBA) and I attended Matthew's IEP meeting today. The other members of the "team" included his teacher, an OT, a PT, and assistant principal. Everyone was nice, the meeting went well, and we got to tour the school.

We saw Matthew's classroom and met the two aides (one male, one female). The only thing I did not like was the hard plastic changing table. Matthew doesn't like to be flat on his back (due to sensory issues) and is used to his table being cushioned and having a pillow for his head.

I realize that school is going to be a difficult transition for Matthew (and me too) but he needs the 27 hours per week of ABA-based instruction and supposedly Fairfax county has one of the best autism programs in the nation. His first day of school will be January 2nd...luckily it is a Wednesday so he will only have 3 days until the weekend.

DAN! Test Results and Doctor Recommendations

I received a packet from Mathew’s DAN doctor today. It included three prescriptions and the following recommendations:

1) L-carnitine solution 100 mg per 1ml Give 2 tsp p.o. B.I.D. 600 cc
2) Diflucan susp. 50 mg / 5 ml 1 tsp p.o. B.I.D. 300 cc
3) Nystatin susp. 500,000 u per 5 ml. 2 tsp p.o. B.I.D. 600cc

Avoid daily use of highest oxalate foods (examples include peanut butter, soy protein, spinach, sweet potatoes, nuts & berries), but concentrate on GFCF foods.

Use activated charcoal 1 cap at bedtime the first week of yeast treatment (Diflucan) to decrease the “die off” reaction seen day 2 to 7 of treating for yeast. Ask for caps at the drug store.

Your child needs:
CoQ 10 – add 50 mg per day
Carnitine – Rx, add 1,000mg/day
Glutathione – apply to skin daily (Rx from Wellness)
Add P5P 50 mg/day (Kirkman Labs)

Call the office if you want to try nasal B12 or shots every 3 days. This is quite helpful and the labs indicated Matthew needs more B12.

Hair Test:
Your child shows a c shaped profile.
Your child shows displaced normal nutrients.
Your child shows Lithium depletion. Call the office and we will fax a prescription for lithium cream to Wellness to replace a normal nutrient.

We have a few ideas for you about metal avoidance: (these were marked for Matthew)
Antimony…in flame retardant – cover you child’s mattress in a hypoallergenic cover.
Arsenic…in chicken feed, so buy organic chicken. In treated lumber so wear shoes on decks and don’t allow your child to play under a deck. Avoid cigarette smoke.
Tin…in tin cans and in stannous fluoride.

**********
All this stuff is like Greek to me...I've never heard of most of it (but why would I?)! It is very overwhelming and we'll be adding this stuff to the supplements Matthew is already taking. I would appreciate any comments/advice/warnings from other autism mommies that currently use/have tried these regimens. Thanks!!!

Found a GFCF PIZZA!

I sent John to Whole Foods last night on a GFCF treasure hunt. Our hero came back with a $7 small box of Amy's frozen pizza. The crust is made of rice and the cheese is soy. There's very little sauce but it has finely chopped spinach on it and Matthew ate half the pizza for lunch! (Yes, Matthew ate spinach...he didn't realize it was a veggie!) I am so glad we found a GFCF replacement for his favorite food. :)

Snow Day & Trip to the Mall

It snowed last night so our tour of Matthew's preschool was cancelled. Instead we went to the mall (he enjoys shopping). This time I left the stroller in the car and let Matthew walk. We started by eating lunch at Arby's...not my food court restaurant of choice but I didn't think he would enjoy Taco Bell or Chinese. I've been in Arby's maybe 3 times in my life so I wasn't sure what to order, but I got Matthew a small plain JR roast beef meal and a chicken cordon bleu for myself. I had brought a juice box in my purse for Matthew so I drank his soda and we shared the fries. He actually ate about 1/3 of the plain roast beef slices...I was in shock! Now we have another protein alternative for when we're out and about. He also sat in the booth like a big boy and I had to laugh b/c the seats were so low and the table was so high I could barely see him!

After lunch we went in search of the glass elevator. Matthew LOVES elevators. He by-passed the glittery/light flashing merry-go-round to get to the elevator (he calls it an "ab-bie"). We went up and down about 10 times and he was in Heaven. After the ride we went into Macy's to find their elevator and the entrance to the parking lot. He enjoyed the ab-bie but it wasn't as exciting as the glass one. As we left he yelled "bye bye Target!" (that's where we usually shop) and said goodbye to the elevators.

On the way home I had to stop at Giant to pick up my Rx...Matthew has a word for this store but I can't figure it out. As we walked to the car he said "bye eat!" He associates the grocery store with eating so that's good...he knows there is food there and what do you do with food?...eat! Upon our arrival home we went out to the back yard to get some sun and play in the snow. We had fun and I attached a video to the post below (and yes, he still had a little ketchup on his face!).

Fun in the SNOW

Photo Sharing - Video Sharing - Photo Printing - Photo Books

Info on Casein -- Foods to Avoid if CF

I came cross these lists while surfing the web. For anyone interested in a CF (dairy-free) diet, the following info is good to know:

Common Foods Containing Casein:
Milk
Yogurt
Kefir
Cheese
Cottage cheese
Ice cream
Salad dressing: Ranch and others

Creamed soups

Hidden Sources of Casein:
Baked goods
Cookies
Hot dogs
Lactose free foods
Lunch meats
Milk chocolate
Most non-dairy creamers
Nutritional Bars
Multivitamins
Pancakes
Protein powder drinks with: casein, lactose, (sodium) caseinate, or whey.

Dairy-Free & Hating It!

We started Matthew on a casein-free diet on Saturday. I have replaced his 2% milk with rice milk and almond milk (and will eventually try soy but I have read this has lots of estrogen and is not good for the esophagus). Matthew has lost access to yogurt, cheese, butter, and ice cream - basically all the foods he loves and actually eats (he is a very picky eater)!

Matthew hates all the milk replacements (even the chocolate and vanilla flavored ones) so I am worried about him. We are giving him a calcium supplement but need to come up with other foods he can try. We will do this for 2 weeks and then begin gluten-free as well. I think he'll be able to stand that better b/c even though almost everything has some form of wheat, oats, or barley in it, there are more replacement foods for him (they are expensive and hard to find but they do exist).

Matthew's Preschool Teacher

Matthew's special needs preschool teacher (Ms. Heather) came to the house yesterday to meet us and explain the PAC (preschool autism class) program. She is young and tan (lol) and a little serious...not the chubby Mary Poppins I was expecting!

Matthew will be the 6th (and final) student in the class which is made up of one girl and the rest boys. The ages range from 2 to 5 years old and the kids are low to high functioning. The teacher said Matthew would probably be in the middle of the pack based on the short time she spent with him. This is the schedule: Monday 9:15 am - 1:15 pm, Tues, Thurs, Fri 9:15 am - 3:45 pm, and Wed 9:15 am -12:30 pm. Not sure how he will hold up on the 3 long days b/c he usually takes a nap by 3pm.

The program is ABA-based and is at a different elementary school than the one we thought he would attend so Matthew and I are going to visit his class (I requested this) for about a half hour on Thursday morning. We haven't been given a start date yet but I'm thinking it will probably be December 17th.

Because he is transitioning from the Early Intervention program (ITC) to the public school system we will lose his home-based speech and physical therapy sessions, but we will continue Matthew's private one-on-one ABA therapy at home. I will write more about that after Monday as that is the day Jenn (his BCBA) is bringing "his book" and will start the intensive verbal behavior therapy...up until now (the last 3 visits) she has been getting to know him and gaining his trust.

Let's Talk Stims

So today I figured out how to make a video on my digital camera, down load it to the computer, and then "drop it" onto the web to transfer to my blog. I still can't figure out how to attach text to the post with out losing the video so I'll just write here about the 2 videos below.

The first video is Matthew sitting in his high chair in the kitchen. He does have a booster chair but prefers the high chair and also has a little table and chairs next to ours but rarely sits still long enough to eat a meal so we just put him in the high chair. He weighs 36 pounds so not sure how much longer he will fit in there! He sang Twinkle Twinkle Little Star (in his own language) earlier so I was trying to get him to sing for the video but of course he blew me off!

The video directly below this post shows Matthew stimming. He has a few...occasional arm flapping (when really excited which we redirect to clapping), toe walking (which has greatly decreased lately), and fence walking (he sometimes does this on the back of furniture or the wall as we go up the stairs). He also likes deep pressure (like rubbing my face on his or piling the couch pillows on top of him). We are on a waiting list for an Occupational Therapist who will create a "sensory diet" for him...hopefully they can address some of these issues at his special preschool (he'll be starting soon).

Example of Matthew "Stimming" (Fence Walking)

Photo Sharing - Video Sharing - Share Photos - Free Video Hosting

First Video Attempt

Photo Sharing - Video Sharing - Share Photos - Free Video Hosting

Speech Therapy with Kim

Matthew loves Kim, his private Speech Therapist. (He also adores Valerie who comes to the house through Early Intervention.) Every Tuesday morning we drive into Springfield to spend an hour with Kim at the Chesapeake Clinic. He talks about Kim during the week and the elevator (his new obsession)...he calls it the "ab-bie" and has three (make-believe) in our house. He uses 3 closets with bi-fold doors that he opens, goes in, and then exits (sometimes stays in there!). He makes his special elevator sounds while going up & down on his toes to simulate the movement of the elevator. This was cute the first few times he did it but two nights ago we had to remove the downstairs kitchen pantry door b/c this activity was interfering with all others. He still has 2 "ab-bies" upstairs but it looks like the one in the master bedroom will soon lose it's door as well.

Anyway, the point of this post was to show you the pic of Matthew and Kim and tell you how GREAT she is. Unfortunately, we might lose her when he goes to the special preschool. I will ask the teacher (she's coming for a home visit on Thursday) if it is possible to let Matthew miss some preschool hours (go in late) so he can continue his visits with Kim and the 4 hours (weekly) of private ABA therapy he now receives at home.

Bye Bye Mailman!!! (& other new words)

After 2 hours of ABA therapy this morning (during which he said some new words: crayon, shake it, and open) I thought it would be nice to take Matthew out. We went to make a photocopy at the Parcel Post (it was the invoice for his hair sample - the last of the four tests I had to do at home and mail to various labs for the DAN doctor), had lunch, and then drove to the Post Office.

In the shopping plaza Matthew pointed to a stop sign and said "stop!". On the way to the PO he said road, tree, house, and shopping (sounds like sha-shing). Then we went in the post office. No one else was there so we brought our package directly to the counter. Matthew was moving around and playing with the floor mat below so the postal clerk said "Matthew, do you want to put this sticker on the package?" Matthew just looked at him like whatever buddy! so I asked the clerk to do it. Then I paid and told Matthew to say goodbye. Well, he screamed as loud as he could "BYE BYE MAILMAN!!!" and I heard lots of laughter behind us. I turned around and there were about 10 people waiting in line...I never noticed anyone come in. So we said goodbye to everyone and received lots of smiles and "isn't he cutes"...and ALL the way back to the car Matthew yelled "BYE BYE MAILMAN!!!"

Please Don't Call Matthew "Autistic"

This is a pet peeve of mine...and many other special moms I have come across. Holly Robinson Peete is very vocal on this subject and it is the first point in Ellen Notbohm's book (see post below). "Defining a child by one characteristic runs the danger of setting up an expectation that may be too low...and if the child gets a sense that you don't think he 'can do it', his natural response will be: why try?"

Yes, Matthew has autism but that is only one aspect of his total character...it does not define him as a person. (If you knew a person with glasses would you label him "myopic"?) Matthew is a child with many thoughts, deep feelings, and exceptional talents and I don't want any label to hold him back or give him doubts about his capabilities.

BTW, I borrowed the above picture/quote from the Mother of Shrek blog and I want to take this opportunity thank Casdok for reading my blog & leaving comments! :)

Ten Things Every Child With Autism Wishes You Knew

I received this summary at the ABA conference I recently attended (see Nov. 16th post). Ellen Notbohm is the award-winning author of the book. Here are the 10 things to remember:

1. I am first and foremost a child. I have autism. I am not primarily "autistic".


2. My sensory perceptions are disordered.


3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to).


4. I am a concrete thinker. This means I interpret language very literally.


5. Please be patient with my limited vocabulary.


6. Because language is so difficult for me, I am very visually oriented.


7. Please focus and build on what I can do rather than what I can't do.


8. Please help me with social interactions.


9. Try to identify what triggers my meltdowns.


10. If you are a family member, please love me unconditionally.

A Butterfly In The Wind (author unknown)

A child is...
A butterfly in the wind,
Some can fly higher than others;
but each one flies the best it can.
Why compare one against the other?
Each one is different!
Each one is special!
Each one is beautiful!

My "Tagged" Post

Guess what? I’ve been Tagged...who knew such a thing could happen?!

Here's the deal - I have to list 8 interesting/random things about myself, while also mentioning Julie at http://www.wardanderson.org, who is the person who tagged me. Then I have to tag 8 other blogs...which will be difficult for me since I don't even know that many bloggers! But I'm a good sport and will comply, however, I have decided that since this blog is about Matthew, I will provide some interesting tidbits about him instead of me! Here goes:

1. Matthew broke my water bag (he was finally ready to enter the world) while we were shopping at Babies R Us
2. Matthew's daddy was deployed for the first 6 months of his life but he bonded with him immediately upon his return
3. Matthew's first word (& people think I'm crazy but I heard it!) was Hali...the name of our beloved German Shepherd
4. Matthew has had three surgeries (@ 4 weeks, 4 months, and 21 months) which is more than some people have in their lifetime
5. Matthew will not eat any vegetables (except for french fries with ketchup...which really don't count)
6. Matthew loves anything Sesame Street (especially Elmo) and enjoys having his daddy sing "Rubber Ducky" in the bathtub
7. Every night Matthew says "nite-nite, time for bed, go to sleep" and then pretend snores (just like his daddy)
8. Matthew may have autism but he a is a total "ladies man"...all the women go wild for his dimples & big blue eyes :)

Matthew's New Glasses

We picked up Matthew's glasses yesterday. He has to wear them due to his right eye crossing in. The condition is called Strabismus and it is not related to his autism. Due to his sensory issues, Matthew does NOT like wearing them. The Optician (and a family with a 3 year old girl that was there) suggested we bribe him with favorite videos or food. We have informed Matthew that if he keeps the glasses on he can watch "Spectrum Connections" which is a wonderful music therapy video specifically for kids with ASD...I highly recommend it! Keeping the glasses on will be a challenge but hopefully they will strengthen the eye muscle. Surgery is another option but it could cause more problems so we'll hold off for now.

ABA-Verbal Behavior Conference

Today I attended an Applied Behavior Analysis conference sponsored by AOI and presented by Patrick McGreevy. Dr. McGreevy received his Ph.D. degree in Education from Kansas University, where he was a student of Ogden Lindsley, who was a student of B.F. Skinner. Now that's impressive! (Remember Psych 101 class?)

I'm so glad I attended the conference. I learned all about mands, operants, tacts and intraverbal responses...I now feel like I speak a fourth language! ABA is VERY interesting to me. Maybe one day (when Matthew is older) I can go back to school to get another degree and become a BCBA.

Great Quote

"Autism is not a tragedy. Ignorance is."

Home Test Kits

Today was a big day for tests at our house...for those of you who have "been there, done that" with the DAN kits you know what I'm talking about!

I won't gross you newbies out with the details but a sample of Matthew's urine was sent to Paris, France and DHL is scheduled to come pick up the 2 stool samples that are going to IL tomorrow (they are chillin' in our freezer). Ah, the joys of parenthood.

Two more tests to go - one is hair and I have to cut 7+ inches from various sections from the back of Matthew's head. I'm sure he'll love that...ay yi yi!

What Autism is NOT!

Lissa (Matthew's Great Aunt) emailed me a link to the Vanderbilt Children's Hospital website and this was on it. Good info...

As important as it is to understand what autism IS, it is also important to know what autism is NOT:

• Autism is not a mental illness

• Autism is not the result of poor parenting

• Children with autism are not unruly or spoiled kids who just have a behavior problem

• The vast majority of persons with autism are not savants, like the character portrayed by Dustin Hoffman in the movie Rain Man

• Children with autism are not without feelings and emotions

• No known psychological factors in the development of the child have been shown to cause autism.

Red Flags of Autism

I am often asked: how did I know...what were the early warning signs? Well, I came across this list of social & communication red flags (source www.firstsigns.org) just before Matthew turned two and that's what tipped me off. One of these days (when I have time!) I will write a post detailing Matthew's history up the day he was diagnosed with ASD.

If your baby shows any of these signs, please ask your pediatrician for an immediate evaluation:

• No big smiles or other warm, joyful expressions by six months or thereafter
• No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
• No babbling by 12 months
• No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
• No words by 16 months
• No two-word meaningful phrases (without imitating or repeating) by 24 months
• Any loss of speech or babbling or social skills at any age

Matthew began to point and wave at 26 months and is now starting to put 2 words together. We are very proud of him!

Afternoon at the Kennedy Krieger Institute

We took Matthew to Kennedy Krieger (Johns Hopkins) in Baltimore, MD on Tuesday. It has a super reputation but I didn't think it was that fabulous. It was pretty...looked like a mini college campus with stone buildings and the staff was nice but I wasn't blown away by anything.

We spent 1.5 hours with a speech pathologist who administered the ADOS and then 1 hour with a developmental pediatrician to discuss Matthew's history, symptoms, and results of the test. Matthew had already taken the ADOS with his dev ped at CHKD so we knew what to expect (we were there for a second opinion and to get more ideas/resources for treatment). He had similar scores...did a little better b/c he had taken it once before and he was 3 months older. The SP was young but did a good job. The ped was originally from India and we had a difficult time understanding her.

The only exciting part about the experience was that we were in a room with a two-way mirror and we were being videotaped. We signed a release so they can use it for future research or training purposes...who knows, maybe one day Matthew's video will make a difference. I'm supposed to call back to make a follow-up visit in 6 months but since they didn't do anything different and we didn't learn anything new I will probably skip that!

Daily DAN! Supplements

For those of you that are interested in the DAN doctor's list of vitamins & minerals here it is! She told us to start a new one every 3-4 days and keep a journal/watch for reactions. BTW, all of these (except for the Rx cream) can be purchased on-line at Kirkman Labs...they are expensive and insurance doesn't cover them, but if they help your little one with autism they are well worth it!

Cod liver oil - 1 tsp/day
Multi-vitamin - spectrum complete 1 tsp/day
Calcium powder with vitamin D - 1/2 tsp/day
Magnesium hypoallergenic capsules - Epsom's salts 1/2 cup in tub at night
Zinc - 1 tsp/day
Probiotic - 1 capsule/day
Melatonin - 1 cap at night
Reduced glutathione cream - 1 cc to feet daily & wash off in AM
DMG, B12, folinic - 1 tsp/day (stop if makes him hyper)

Visit with the DAN! Doctor

We drove to Richmond, VA today to see a DAN! (Defeat Autism Now!) doctor. She is a developmental ped but has also been doing the DAN protocol for about 10 years. She was nice but very expensive...charges $600 (yes, that is six hundred) per hour.

She briefly examined Matthew and then spent the rest of the time talking to John & I (while my mom stayed with Matthew in the waiting room). We answered a lot of questions and then she went through her presentation (all complicated scientific research). We were sent home with tons of supplements ($200 worth), a small book that explains the GFCF diet, and several test kits (stool, urine, hair) to collect at home and send away for results (one of them is going to France...wish I could go too!). We have a follow-up visit in 3 months.

On the way out we stopped by Lab Corp to get Matthew's blood drawn for a bunch of other tests. Of course he screamed bloody murder (thankfully John was there to help hold him down) as they filled about 10 vials of blood. I think the entire building could hear his screams. He is so loud and so strong (kicked the whole time) but he has been that way since he was a baby...my little fighter!

"Don't Quit" (Inspirational Poem)

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low, and the debts are high,
And you want to smile, but you frown a bit,
Rest if you must, but don't you quit.

Life is strange with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow,
You may succeed with another blow.

Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you can never tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit,
It's when things seem worst
That you must not quit.

ChildFind Meeting (Parent Conference)

I met with a School Psychologist on Friday for about an hour. She was one of the testers present during Matthew's evaluation. (The other two were a Speech Pathologist and a Social Worker.) She basically walked me through the Team Evaluation Report and told me what would happen next (Eligibility Meeting, then IEP and services within 30 days). There were 2 items on the report that John and I strongly disagreed with so we typed our rebuttal and I will drop it off tomorrow.

The Eligibility Meeting is set for this Thursday and will be short (5-10 minutes). The three people who evaluated Matthew will decide if he will get services through the Fairfax County public school system (I have no doubt he will) and whether he qualifies for a "developmental delay" or "autism" label (I know he will get the autism label based on the contents of the report).

Lots of New Words!

It seems like ever since Matthew turned 31 months old (October 20th) his language skills have kicked in. He seems to say a new word every day or so. Recent words include tunnel, moon, cut, apple, purse, ice cream cake (from John's b-day), and candy (learned that one on Halloween). I'm so used to hearing him babble it's funny to hear him say everyday words!

Other Therapies for Matthew (PT, OT, ABA)

Peggy is Matthew's physical therapist (PT). She comes for 1 hour two times per month (every other week). She has recommended a weighted vest and custom shoe inserts for his flat feet and sensory issues.

Tracy will eventually be Matthew's occupational therapist (OT). She will also come 2 hours per month but is backed-up and we are on a waiting list. Both the PT and OT are sponsored through the EI program...in Fairfax county it is called the "Infant & Toddler Connection".

I met with an ABA consultant yesterday. She charges a whopping $150 per hour but Tricare's ECHO program (we're a military family) will give us $2500/month towards that...still waiting to be processed into ECHO. I will write more on the Applied Behavior Analysis once we get into it but it's based on the Skinner model and can be very intensive.

Speech Therapy with Valerie

Every Thursday at noon Valerie (Matthew's speech therapist) comes to the house. This is sponsored through our county's Early Intervention (0-3 years) program. He gets 4 hours per month with Valerie. I also recently signed him up with a private ST for an additional 4 hours per month, so he gets 2 hours per week...one at home and one at the clinic. Matthew really likes Valerie so it will be sad to say goodbye to her when he transitions to the special needs preschool. I will have more info on this after tomorrow's meeting at ChildFind.

Trick or Treat!

Matthew was a FROG for Halloween this year. Ribbit! The treating started out a little rough as he wanted to be carried from house to house. Lately when we take our afternoon walks he wants to be picked up...don't know why b/c he used to walk just fine. John went back to the house to get Matthew's wagon and everything was fine after that.

Early Birthday Treat!

My friend Lena came over today with her son Max. I have known Lena since our undergrad days at Hood College. Max is 2 days older than Matthew and is VERY verbal and engaging. We try to get them together as often as possible so Matthew can have a role model his age.

My 37th b-day is on Friday and Lena showed up with a yummy lunch from TGIF. After playing in the yard we came inside and little Max sang me "happy birthday" while we ate cake. It was a nice treat to take some time out to just talk and play with the kids. Thanks Lena...you're the greatest! :)

My First Blog!

This is my first post on my first blog. Yes, there is a lot of BLUE but this is a favorite color and Matthew looks great in blue (b/c of his big blue eyes) so I just tend to pick blue for anything that involves him. It is also a very calming color for me.

I've been meaning to start a blog for a while. Julie and Valerie were my first inspirations but I have recently met many moms of children with autism and learned that it's a great way to share info. Life is very hectic but I will try to post as often as possible so family & friends can keep up with Matthew's progress.