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)

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First Video Attempt

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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.