Tuesday, August 26, 2008

Progress

*Click on the title "Progress" and you can see a short (not very good) video clip of Will that I was trying to make for Grandma. (I will change it to a better one if I can get him to do it again. You know you pull out the video camera and they stop whatever they are doing! :)

Will has been doing really good lately. We are still having some behavior issues but not nearly as much as before. This last week he did some really cool things.


First of all, Kevin has been teaching him to make a surprise face and put his hand up to his mouth. He has done that on command or even initiated it.


When mommy says "Oh Toodles" from the Mickey Mouse Clubhouse he will say his version (which if I do say so myself is pretty darn close to the actual words).


Also, he will shush you with his finger to his mouth and say "shhh". It is the cutest thing ever!!

And finally, Mommy's phone has a ringtone by Gwen Stafani, so not your normal phone ringing. Well, the other night I was at the desk helping Taylor with his spelling words and Kevin called, as he always does on his way home from work. Will was laying on the floor watching some cartoon and my phone was on the sofa. Will got up, picked up the phone, walked over to me and put the phone to his ear said "Hello" (or his version of the word), then handed the phone to Mommy. We were so excited! It was so cool!
So big interacting this week. Eye contact is awesome! He will even look up when you call his name every once in a while!! So progress is being made, slowly but still progress!

Here are some more entries to Kevin's Journal about Will...
July 29, 2008 It has been awhile since I have sat down in front of this document. My absence should not be mistaken for a lack of the amazement, because that occurs every single day. The simple fact is that I tend to get to things in my own time.

Breakfast time, I get to enjoy this time only a few days a week, and normally it involves a shower afterwards. Not because Will throws his food, but if Almond butter is good for your hair, Will has the healthiest hair around.

Anyway, Mom had put Monsters Inc in for him to watch. I pressed play, and put him in his seat to enjoy a very healthy breakfast loaded with… Supplements! I left the room to get some coffee and when I returned Will was sitting there covering one eye. I asked him if he was alright, I know, but he was looking past me and at the screen. So, I watched. I noticed that when Sully came into frame he lowered his hand, but when Mike was in frame he covered one eye. To some of you that might be reading this and haven’t seen the movie, Sully has two eyes where Mike only has one. Good job buddy!

I often think how when Taylor was younger and going through his developmental stages, I took all of the little things for granted. Now please understand that they were noted and always found to be the cutest of behaviors, but nothing like this. These tiny little milestones of Will’s are far from tiny. They have become one of the biggest parts of my life.


August 10, 2008 My sister-in-law had called yesterday, nothing important, just a friendly call to see what was going and to say hello. She did ask a question that I do get often and even though there are a plethora of answers, I often respond quite vaguely.

“Have there been any improvements with Will?”

Yes there have been improvements. Some days they are great and some days not, but they are ever coming. I am beyond thankful that they are too. Now to us, these improvements are huge. Are they to our friends and family? I believe they are. Are they as monumental and healing to them as they are to us? I don’t know, and this is why I answer vaguely when asked.

I find it hard to believe that unless you have had your heart torn from deep inside you, stomped on, torn to shreds, and shoved back in… You have no idea what it is like. Now this is not to fault anyone, it is just so and there is nothing that can change it.

I love my family and friends and am very fortunate. Thank you all.

A smile cracks across my face as I proof this rant. I don’t even know what sense it makes upon delivery, but it does make at least one of my stitches heal.

What has brought my heart to this log today is a simple token, which is far from small and did its share of healing to a damaged heart this morning.

Will and I had the morning to ourselves today. He woke up crazy early this morning and shortly after, put himself back to sleep watching TV from the couch. Now all went pretty much to the normal tempo. He woke up, he had breakfast, and he took a bath.

The mood was awesome. He was talking in the gibberish that more times than not fills my ears, laughing in his in his sweet little voice, and playing with the greatest of intentions. I was at the computer doing something unimportant when it happened. Will had walked to the edge of the desk and paused. Looking straight at me he said “dad.” My attention immediately shifted to this little angel that stood besides me and I couldn’t help but smile at him, softly responding with a yes. I was frozen and nothing more was said at that moment, but he grinned and giggled at the reception of my attention.

Saturday, August 23, 2008 I was outside doing something, and both of the boys were in the house. Will had walked up to the window to see what I was doing. He stood there for a minute and then walked away. Moments later I heard a knocking on the front door which repeated only a few times. A short pause followed and then this little voice said “hello.”

Wednesday, August 13, 2008

We've been super busy

I haven't posted in a while. Partly because Taylor came home from Florida and we have been hanging out, school started, Dad started a new job, Will started Mothers Morning Out at Kidsplay Therapy Center, and we started going to church again (StoneMill). So you can see we have been really busy. Partly because of all that, but partly because I think I was expecting Will to just wake up and talk, to make these huge improvements overnight. We are moving forward, but I feel like it is one step forward and two steps back some days.


I think a lot of what is going on right now is the yeast die off but we will have to wait until our appointment with Dr. Sloan to find out. Most of the things that he was doing a few weeks ago have improved. He has been doing better with eye contact again, he has been saying Mom and Dad about every other day, but we have traded all that for some aggresive behavior. He is hitting, kicking, and pulling hair more than normal. He is doing it when he is mad and he wants to hurt you. Not sure yet on how to discipline him, we do a lot of putting him down and walking away, saying no, and trying to re-direct. I think I am going to skip to the chapter in my book about behavior problems.


He needs to be able to convey his wants/needs. We have just been waiting to see if coming out of the fog is going to help him find his words and it still might but we might need to move along to sign language or PECS. At this point I don't care how he tells me something as long as he can just tell me but at the same time I don't want to encourage not talking if it is going to be possible.


It is hard sometimes to be hopeful but realistic at the same time. But I guess we don't know what Wills reality is going to be.... so we can hope.

Sunday, August 3, 2008

How did you know?

That is the questions most asked about Will. What were his symptoms?, When did we figure it out?, etc. Here is the short of it, (or maybe the long....)

Will was typically developing, hitting his milestones, (crawling, walking, babbling, etc on time), even spoke a few words (mom, dada, baba, gom (for grandma). He laughed, hugged, cuddled, etc. I even remember showing Kevin that Will had none of the traits for Autism in a parent magazine once when Will was around 1. At his 18 month doctor well visit he hadn't gained any new words and the other ones were either gone or few and far between. Our wonderful pediatrician
Dr. Susan Smiley recommended a hearing and a speech test at Children's Healthcare.

I had no problem with the hearing test. I however, wasn't really interested in the speech test. I had read on tons of Internet sites that kids didn't talk until after 2 sometimes. No big deal, he is going to be a late talker. (Probably because I never make him ask for anything, right?) No reason to make him take any unnecessary tests...

My sister was bugging... 'When are you going to get that test?", "Why haven't you scheduled that test yet?", "You are stupid if you don't get that test done", etc. Finally I said to her "What do you think is wrong with my child??!"

"One of my friends is a teacher of Autistic children and she thinks some of his traits are Autistic" She said.

What? She is crazy.

So I googled "Autism". Took me straight to the
Wikipedia. I read. Kevin was in the next room. I said "Will does some of these things, these characteristics". Will can't be Autistic. Will can't be Autistic, I thought but I got a sick feeling in my belly and it stayed there for a while.

Over the next few days we read, I cried A LOT! I was constantly calling Kevin freaking out or Grandma. Didn't want to talk with Karen at this point. Not mad at her, but she just turned the world upside down.

(I later thank her, because although it was very difficult for her to say something, she did and we could get started with treatment earlier because of that)

Kevin and Grandma keep calling Karen telling her she better stop freaking me out that there is no way Will has Autism. (They did not want to believe her)

So I called our Pediatrician, crying to her as I said those words "I think there might be something wrong with my baby". She said she doesn't think he does have it, but if you have a bad feeling, you should check it out.

She recommended
Emory Autism Center and The Marcus Institute . We made an appointment for an Initial Information Meeting in the beginning of April.

Oh, by the way, those traits that Will has or had in the beginning were:

Difficulty understanding emotions of others*fleeting eye contact*difficulty making friendships*lack of emotional reciprocity*does not show/point out/bring objects*doesn't understand social cues*affection on his own terms*no pretend play*no imitation*pulling adults to items rather than pointing*verbal communication*spinning/flapping/tip toes/looking at fingers*doesn't respond when called*spins wheels* not interested in wide variety of toys*does not ask for help*under sensitive to pain*eating inedible objects*sleep problems* self-injurious behavior (head banging)*

We answered questions, Will played some, whined some, and really just wanted out of that room. It lasted a little less than an hour. Although he said that he couldn't tell us anything at that appointment (we would have to wait for a diagnosis to be scheduled for 8 months later), we should move forward. Along with giving me handouts for everything Autism, how to get services, funding, etc. I knew that he was really telling me that he suspected it to be true.

The rest is just a blur. Hours on the phone trying to set up appointments, dealing with insurance, reading everything we could find about Autism. We knew well before we got an official diagnosis at The Child Neurology Associates on June 25th. I'll never forget that date because I had called everyday since May to see if they had any cancellations so we could see the dr. earlier. "Early diagnosis is the key" or so I hear.

We are now getting one hour a week of Occupational therapy, one of special instruction, and soon one of speech therapy (Babies Can't wait has just hired someone). We are about to start a development growth therapy. We see a DAN! (defeat Autism now) Dr. and are working on the biomedical treatment. We have applied for services from the government (social security for Will, Medicaid, Deeming Waivers, etc) but have not heard back yet.

I feel like we have come to some version of acceptance. We know what we need to do for now. Even with that acceptance, some days you still mourn the normal life you had envisioned for your child.

Saturday, August 2, 2008

Month 2


Here we are at the start of month 2. Now that we have gotten the diet/supplements down we are going to start focusing on developmental growth. So many therapies to choose from....ABA, RDI, or DIR/Floortime. We have chosen (at least for now) to do Floortime created by Stanley Greenspan. In addition to Will's hour of OT and hour of special instruction each week (Babies Can't Wait doesn't have a speech therapist right now) we are going to work towards adding 2.5 hours a day of Floortime a day.

There are some evaluations and training we will be doing with the Floortime Atlanta group but for right now Kevin and I are just going to jump right in. There is enough information on the Internet and in the book we have been reading, The Child with Special Needs by Stanley Greenspan, to at least get us started.

(I've been slacking on keeping track of what he eats... Nothing really new, lots of fruit and veggies. He hasn't been that crazy about meat lately. )


Just a tidbit of information:
The word Autism actually means "alone" or "on their own". I didn't know that... makes sense but also makes me sad.


Food Diary
Wednesday
Breakfast: Banana, Gorilla Munch Cereal
Lunch: Blueberries, 1/2 hamburger, homemade french fries
Dinner: Pork Fried Rice w/o the soy sauce, oranges.

Thursday
Breakfast: Banana, hashbrowns, toast w/ almond butter/honey.
Lunch: left over pork fried rice.
Dinner: Ians fish sticks, pears, fritos

Friday
Breakfast: Banana, toast w/almond butter/ honey, craisins, some gorilla munch (he was hungry!)
Lunch: Ians Chicken nuggets, mashed potatoes, corn
Dinner: Corn on the cob, turkey, oranges
Saturday ? (lol)
Sunday
Breakfast: Banana, cherries, Almond rice bread w/ almond butter
Lunch: fritos, refried beans, blueberries
Dinner: Hot dog, oranges, gorilla munch cereal
Monday
Breakfast: Waffle, banana
Lunch: ? - If I don't write it down, I don't remember.
Dinner: smoked turkey, potatoes, mixed veggies
Tuesday
Breakfast: Waffle, banana
Lunch: popcorn, blueberries, turkey
Dinner: Cherries, bacon, turkey, GF pasta w/ a little EVOO.