Monday, December 22, 2008

My kid is so freaking cute!!

Will has been doing so well lately, adding new words here and there. I can't tell you how much I love the look on Kevin's face when Will says Daddy. He has been giving hugs and kisses to more than just Mommy as well. He also is enjoying looking at things upside down! I really have been trying to focus on what a joy that he is and not focus on his Autism.
Will is handling things so much better these days. He is still banging his head and going "boneless" but not quite as much. Maybe it is because he has given up his naps and is just exhausted?? But it has been nice.

He has added some words and now says: Chee Chee for Choo Choo, Bye, Hello, Down, Up, Daddy, Jump, Think, Go, and he will count numbers (they don't sound like the words exactly but we know what he is saying). He hasn't said Mom in a while but every once in a while he will and it always make me super happy!!

He is just such a great kid and makes us laugh and smile everyday!

Saturday, December 13, 2008

Promises, promises...

You know I haven't taken a real video of Will since the diagnosis. I also used to keep a weekly if not daily journal of things Will does, cute things, funny things, new things, etc. I haven't written in it one time since the diagnosis. Here are some exerts from my journal of Will:
3-10-07 You are so funny! You play peek a boo. We will be lying in bed in the morning and you will put the pillow over your face until I say "Where's Will?" and then you will pull it off and laugh!
4-25-07 You started clapping when I tell you to clap! It is so fun. We both laugh so loud when you do it.
5-14-07 Grandma tossed a tennis ball to you and you threw it back!! You picked up on this so fast and you cheer each time you toss the ball back to us.
7-10-07 You are playing a ham for the camera. You will give a big open mouth smile for us when we try to take a picture.
2/8/08 You hit everything with your head. When you are mad you hit the floor, the wall, or mama with your head. OUCH!
3/14/08 You still
aren’t talking except sometimes “mom”. You are not saying Baba (Bottle), Gom (grandma) or Dada anymore for some reason??

I'm not really sure when everything changed and when Will stopped looking into my eyes. I know it was after he turned 12 months and before 18 months.

I mentioned the holidays and how hard they are for me, Kevin and my friend Lynn have both said that it is important to focus on Will's improvement since we have started biomedical and not on how he is different from other children. Easier said than done, but I am trying.

It is not like I sit around all day crying about what my son can't do or what he does different. But knowing now what the "characteristics" of autism are I look at things differently. Last night we were decorating our Christmas tree and Will had made a line of Christmas items, big to little, and instead of being able to be excited that he can put things in order by size, I worry that he is regressing.

I am going to make a serious effort to enjoy every day with my son, to start using the video camera again, not to focus on what he can't do but what he can!

Wednesday, November 26, 2008

Update

I haven't posted in a while and it is because I have been pretty sad. I really would like to only put hopeful and successful posts on here to encourage the parents who read my blog, but the truth of it is there are sad times and there are times where you don't feel hopeful. We have seen improvement and I am very grateful for that. My son now will look in my eyes and not look away and that in itself is wonderful. I just more than anything want to know what Will is trying to say. He will look up at me and chat away and I have no idea. I just say stuff like "really" or " oh, I think so too", etc. but I really have no clue. It breaks my heart over and over.

He has started some stimming again and I can only attribute that to the fact that we are out of some of his supplements right now due to finances. (I have them on order right now, so we will be back on track soon!!) It has been six months since I applied for Will's Disability benefits from Social Security and we still don't have an answer, apparently they still aren't convinced that he has Autism. Maybe I should invite them over for an afternoon to babysit, ha!

Holidays are going to be difficult. Family is wonderful, but it is always hard for me to be around other kids. I see just how different Will is and that is hard. But Will has fun with his cousins and I love to see that.

I have Jenny McCarthys new book
Mother Warriors so hopefully that will give me some motivation. Now, I just have to find the time to read it : )

Sunday, November 9, 2008

Thank you Autism Society of America-Georgia Chapter



This last Saturday Kevin, Taylor, Will and I went to see Madagascar 2, a Sensory Friendly Film that was hosted by Autism Society of America- Georgia Chapter and AMC Theaters. They keep the sound lower, the lights aren't as dark, and the silence is golden policy isn't enforced (which is actually a good thing for our 8 year, old Taylor) ~
It was great! With a child with Autism we would never have gone to the movie theater to see a film, much less with an Autistic 2 year old! But this weekend Will saw his first real movie in a real movie theater. We didn't have to worry about anyone staring because his hands were on his ears or because he wanted to walk up and down the steps. It was a stress free outing and we don't have a lot of those. He actually watched most of the movie! There was probably about 70-80 people there and no one cared that some of the kids needed to play their Nintendo or some kids made noises. We all were connected by the same journey in life and I felt a sort of camaraderie between everyone. We had a wonderful time and will definitely make this a monthly outing!

Thursday, October 30, 2008

Keep Moving Forward!


"Keep Moving Forward!" It is the theme to one of Will's Disney movies' Meet the Robinsons. It is what we try to do. Some days we mope or we cry. The worst times for me is when he is around other kids his age or younger and you can see the differences. It hits home that my child is going to have a harder time in life just living. But still we keep going, we know this is the most important time to see the biggest improvements and so you keep going even when you want to crawl in bed and pull the covers over your head (although Kevin lets me do that some days too).
Some people focus on the cause of their childs Autism and although we try not to do this, since we think it is more productive to focus on the development, it is easy to get frustrated.

It is so hard to stay focused and positive when you are constantly seeing some news show or read some magazine article where a Dr. is telling you that the fact that you think the environment(Vaccines, BPA, toxins, etc) had anything to do with your childs Autism is crazy. Autism used to be 1 in 10,000 kids and now is 1 in 150 kids. This shows you that it is environmental. Genetics don't cause epidemics!! The arrogance of the doctors, the AAP, the CDC, the NIH to think that just because their studies by doctors who are most likely funded by pharmacutical companies say that vaccines are not harmful to children that they are not. That the million of parents who are watching it change their child are wrong. They are so easy to dismiss the fact that so many children are effected by vaccines and so many are healed through biomedical treatments because they don't see their results as "evidence based". It is quite frustrating!! I mean how many times has 'Science' been wrong?? Many by my count.

I will tell you about us. When Kevin and I first started to accept that Will had Autism we were devastated (still some days just as much as the first). I was looking up anything and everything on the Internet and came across this video on youtube.com. Now everything was not exactly the same but we saw enough similarities between Will and her son that her children's success brought us hope. It is where we first heard of a DAN! Doctor and started to learn about the biomedical treatments. I then got Jenny McCarthy's book Louder Than Words and as I read I wept (I say wept instead of cried b/c it was some serious crying :) So many of the things she was writing about was what we were feeling at that time. - By the way, I recommend this book to anyone who knows anyone with Autism, it truly will help you understand their pain and their journey.

The point of this post is mostly because I have a lot of anger right now that I need to get out but it is also so if even one person reads this and is convinced to look into Biomedical for the treatment of their child it is worth it!

BIOMEDICAL is worth looking into! It does not work on every child, this is true, it is not fast and it is expensive but it is worth trying. We are seeing our child do things everyday that we never thought was possible with this diagnosis. I thank God for Dr. Sloan and for Jenny McCarthy, and for the people who even through ridicule have stayed the course on this treatment to heal our children.

Chelation officially started!!

Okay, Dr. Sloan has given us the go ahead!! We are ready to chelate. Will's heavy metal test showed that he has excessive amounts of the following heavy metals in his body: Antimony, Bismuth, Copper, Lead, Nickel, Thallium, and Tungsten. It is possible that he has other metals that are going to be harder to get out of his system so we will know that at a later date.
We are starting with Metal Free a product by Body Health and he will take that for a few weeks and then we will add DMSA- Dimercaptosuccinic Acid and he will take those pills 5 days on 5 days off.
Dr Sloan has chelated many children and has much success with the method that he uses. With IV chelation (Which many parents prefer), you sometimes see a regression before any improvement and honestly I don't think Kevin or I could handle that emotionally right now. You have to try remain hopeful to get through all the work it takes to heal your child, although we do have our days where we wonder 'Why Will?', Why did our sweet baby have to have this disorder. Truly tests your faith (that is an entire different post-not for right now). But we have much faith in Dr. Sloan and will try everything we can to help him improve. Dr. Sloan says we are way ahead of the curve right now and that is very reassuring!!
So, chelation is started as of today and I will keep you updated on the progress it brings!!

Sunday, October 26, 2008

FAQ

Here are some of the questions we are most often asked, in no particular order:

Do you think vaccines caused Will's Autism? I don't know for sure, but I think so. I believe it was some kind of toxin that caused it. Will has Regressive Autism, which means he was hitting all of his milestones and had words in which he lost, all of this happening between 16-18 months. Kevin and I even had taken an 'autism questionnaire' in a parent magazine around when Will was a year old and he passed with flying colors. (Funny, I was relieved at the time, little did I know).

Why don't vaccines hurt all children? Because our children are pre-disposition ed not to be able to handle those toxins. They can not get rid of the heavy metals like other children can. So they stay in his body and ultimately injure his brain.

From Boyd Haley, Professor and Chair of the University of Kentucky Department of Chemistry: "The EPA safe level for mercury exposure from the diet is 0.1 micrograms/2.2 pounds body weight and the vaccines preserved with thimerosal has 12.5 micrograms of mercury or 125 times the EPA safe level. This makes the vaccine exposure safe if your baby weighs 275 pounds." Also, the thimerosal is injected, not ingested, which makes it more toxic, and it is delivered with aluminum that enhances the neurotoxicity...."

What is a DAN! doctor? DAN! stands for Defeat Autism Now! and these doctors follow the protocol that is taught by the Autism Research Institute. Our DAN! Dr. is Dr. Hank Sloan at The Genesis Center. We love him!! It is quite expensive (although Dr. Sloan does only what is necessary and cost effective) and insurance doesn't cover any of it but it is essential for treating Will, so thanks to the help of many of our family members we are pulling it off.

What is Chelation? It is the process of removing toxic heavy metals from the body. Will is going to start chelation next week!!

How did you first know? See post from August 3r.

Why is GF/CF diet help kids with Autism? The GFCF diet is recommended not because of allergy to the proteins in milk and most grains. The theory is that a large % of our kids do not fully break down the proteins casein and gluten into a single amino acid. They for whatever reason only half breakdown the peptides. These peptides have opiate effects in our kids brains. In other words ever time our kids eat casein or gluten it is like they are taking morphine. ( Got this off a board, was the easiest way that I had heard it explained).

Monday, October 13, 2008

We're in the fight!

Because we diagnosed Will at such an early age (Thank you Karen) we have a great opportunity to make great strides in development. They say that there is a window in which biomedical treatments are more beneficial and we are right in the middle of the fight!! See this blurb from http://www.autismtreatment.info/What+Is+Autism.aspx

'The window of opportunity for improvement, progress or "recovery" is most open for an autistic child in these early years between 18 months and 5 or 6 years of age. This does not mean that older children cannot improve. Just that, the younger your child is when you recognize their problem and begin treating it, the most progress is possible.
The
CHAT test (Checklist for Autism in Toddlers) is an excellent tool for both Parents and Health Professionals to use in diagnosing Autism in toddlers and has been found to be invaluable in doing so.'

Currently Will is Gluten, Casein, Soy, Egg, Tomato, and Peanut free since July 5, 2008. He is on multiple supplements that his
DAN! Dr. Sloan has prescribed (see earlier post for list). He is in Speech and Occupational therapy provided by Babies Can't Wait. The next two steps of this fight against Autism is Chelation and Floortime.

We have been giving Will a product by Body Health called
Metal Free and will send his 'sample' into the lab today to see what heavy metals he has in his body. Once these are identified Dr. Sloan will officially start us on Chelation! Kevin and I are really excited! Despite the fact that it is just one more thing that Will will have to endure each day, we are extremely hopeful that we will see benefits!

Also, Saturday we have an appointment with
Dr. Barbara Dunbar at Floortime Atlanta. She comes highly recommended by multiple people, one being our Neurologist Dr. Schub. She will give us a evaluation and send us with a plan on how to use Will's strengths to help him develop.

So, we are in the fight! While we have some days that we feel defeated, overall I think we are on the right track to make huge wins!!

A friend of the family who has an son with Aspergers gave us this bit of wisdom that I really appreciate...
"...we have been chosen to be their cheerleaders. And as "cheerleaders" you cheer if your team is wining or losing."

Sunday, October 5, 2008

Stop Staring People!!

We had kind of a crappy weekend. Daddy is out of town, at Cumberland Island camping with his friends and Grandma, me, and Will all go sick! Will never actually had a fever but you can tell when he doesn't feel good. Lots of banging his head and his chin on anything and everything. Took long naps both Sat/Sun and that is unheard of for him.
So Sun night I decide I am feeling better and I want to take the boys to the park to get some energy out. We play on the slide for a sec and run around the playground and then he was done with that! He saw someone had left their sippy cut out and of course ran straight to it.
Mommy~ "No Will, you have your own drink, this belongs to someone else.
Will ~ Bangs his head on the ground and goes limp so it is difficult for you to pick him up.
Everyone stares.
Then I follow him down the sidewalk and to the water fountain (which by the way was nasty! Had mold or mildew or something gross all over). So I let him turn it on/off for a while. Every time someone wanted a drink (gross!) I had to pull him back and he would bang his head and fall on the ground! People stare.
This is something I am used to and most days I don't even care when people stare but tonight it just bugged me! Poor Taylor only got to play on the playground for about half and hour and I had had it, we were going back home where we can bang our heads in the privacy of our own home!
So the moral of my little rant for the evening is this, when you see a kid that is throwing a fit and you think "what a little brat" or "that child needs a spanking" (all things I have thought of other kids before) just think that there might be something more to the story and have some compassion. Mom has a saying up in her room that she has always tried to teach us and I think it really applies to my rant, "Be kind, for everyone you meet is fighting a hard battle." ~Plato

Wednesday, September 17, 2008

What is a sensory diet??

When I first saw this I was like "OH NO!!" but then I thought 'There is no way this child is over sensitive to sound'. Especially if you hear how loud he wants to put the tv or how loud he is in the bathtub (loves the echo). Will is definitely under sensititve to sound. So, we figured out he does this when there is a scary part in the movie. I guess it is his way to feel safe. Actually now that I think about it, I do this too when I don't want to hear a scary part in Kevin's gross Zombie movies.... Hmmmm not far from the tree I guess.

I am currently trying to learn about the sensory integration issues. It is kind of confusing to understand why paint on Will's hands makes him so crazy, how sitting in a box of beans is helpful, or even what a sensory diet is... I'm pretty sure Will has vestibular, propreoceptive, and tactile issues. I know he is under sensitive to sound and pain. We have Occupational therapy on Wednesdays and she said he is doing better. She said that most of his 'behavior problems' are because he is reacting to his sensory issues. (Some of it is being a 2 yr old as well I'm sure! : ).

Here is a picture of big brother Taylor getting in on the Sensory diet fun!
Click for a website that I think is helpful for setting up a sensory diet. Or this one, really you can just google sensory diet and there is a million sites to help.

Sunday, September 14, 2008

All I want for xmas is my two front teeth....

(Picture is day of Pre-Op! Took it on my phone so it is not great quality... He fell asleep with Grandma pulling him in one of the hospitals wagons while Mommy was filling out paperwork)

So, Will has gotten through the dreaded "dental work" and we have all come out okay in the end. Dr. Michelle Harmon at the
The Athens Dentistry for Children did a wonderful job and did not have to pull any teeth!! She did some fillings and capped some teeth and although he looks a little different to Mommy, he looks great! I recommend her as a dentist and them as a practice to anyone who has a special needs child. Definitely worth the drive! I went to 2 other dentists before finding this practice. I wanted the best for my son and Dr. Harmon and her staff are the best!

*Note: If you have a child with who won't loose the bottle I suggest changing from juice to some kind of green tea with
Stevia or Xylotol. I prefer Stevia for Will because it helps prevent gum disease and some say reduces plaque. Xylotol is good but for some has a laxative effect and no thanks on that!! LOL.

So Grandma helped with
Pre-Op, Aunt Jodi got Taylor off the bus and we spent 2 days in Athens. On the day of the surgery we were a mess! Athens Regional Outpatient Center was fabulous! Everyone was so great with Will. It was not fun seeing him in recovery but once the narcotics kicked in and the IV was taken out he was set to go. The next couple of days he continued to get better (of course there was some crying) and I am happy to report that today we are pretty much off the Motrin and Tylenol.

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.

Thursday, July 31, 2008

It is what it is....Or is it?

I sit here typing and crying while my son screams. His occupational therapist is trying to hold him down since he was throwing a fit. I could no longer sit there and watch as my sweet baby looked into my eyes as to say "Why aren't you taking me from her?". Is it the right thing to do? I have no idea? There are so many things I don't know. I always try to distract when he is having a fit, upset by whatever, since he can't communicate his wants. This is killing me. He finally stopped, now interested in something she has. It is very hard to know if the different actions are "Autistic" or are just being a two year old. Kevin and I will discuss when he gets home if that is a practice we want continued or not.


This week has been awful, since Monday, Will has been avoiding eye contact, his face has been broken out, he has NOT been sleeping well at all, (I think we went through 6 night time diapers last night). He has been having serious fits, pulling hair, head butting etc, etc. So either he is going through some kind of detox, his tooth hurts (still waiting for our appointment), or he is just being "autistic" (Is that bad to say?). I hate the not knowing. I wish he could just tell me.


He hasn't said mom in like a week, I find myself aching to hear it. I have been around other kids his age a lot lately and sometimes I cry when I hear them talking. Just makes me wonder if he will ever really talk or not? Fears that I hate that I let into my mind. Mostly I think of things like this when I wake up during the night.


"Autism is isolating", you hear that a lot at the beginning. People don't know how to act, what to say. Some of them just glad that its your kid and not theirs. I hate going anywhere. People stare and say stupid things. They look at you like your child is just a brat. (especially at the library, we won't do that again....Will likes the echo!: ) I want to scream 'He's has autism', but I don't feel like I should have to defend the behavior either. I wish there was a park, a pool, a play area where you could go and not feel like everyone was judging. (Mind you, I don't think I will always be this sensitive but getting used to thing are always hard for me).

As you can see this is a down week for me, I feel like Will in that I have big ups and big downs. Even with the great improvements we have seen so far (we are just a little over a month since diagnosis), things are still really hard. Kevin hides it better than me, he thinks he needs to stay strong for me. I cry at the drop of a hat. Tomorrow I will probably be fine, ready to take on the world, or at least this disability! Today, not so much...

Monday, July 28, 2008

The way Daddy sees it...


Here is a bit of Kevin's journal he keeps about Will's day to day improvements, much more eloquent than I could ever write. Makes me cry every time I read it as I picture the moment and feel the joy in my sweet husbands heart.

June 27, 2008
He was taking a nap, and after about an hour and a half he began to stir. Hearing the commotion, I came into the room to find him sleepy eyed and sitting up in the middle of the bed. I quickly and quietly lay down beside him and offered him his bottle. As he rushed the bottle to his mouth, he buried his head in the nook of my arm. As he lay there quenching his thirst he, as if it was as natural as to breathe, reached for his mother's hair to play with. After only a few moments of searching he handed me the bottle, and gave me the sweetest look of satisfaction, closing his eyes and drifting back to sleep in his daddy's arms.
July 3, 2008
I had just finished installing the coax in Grandma's new bedroom, and was enjoying the feeling of lying on the living room floor. Will was sitting on the floor just below the couch playing with his giraffe stuffed animal. I quietly watched him hold the giraffe, which stood eye to eye with him as he sat. He would bend its neck and making a calling sound as he moved the giraffe's mouth towards the ceiling. He did this three or four times but a sweet smile followed each one of the giraffe's happy cries.
July 4, 2008
Melissa and I had just gotten home from Publix and were busy unloading the groceries when Will bolted out the front door. Ignoring the distant explosions courtesy of the premature patriots and cheesing about the freedom, he ran straight to the kiddy pool in the side yard. Surprisingly he only stayed for a moment before running towards the street. Along the way he grabbed a small branch from the pear tree. As he grew closer to the street Melissa said "No sir, stay in your yard!" The pitter patter of his steps slowed as he settled on the sidewalk. Taking a long pause to look and the street and contemplate his mother's request, he turned towards us. Very seriously and slowly, he raised the branch, which could be best described as a Charlie Brown Christmas tree, to his face and disappeared from sight. Happy 4th of July!!!
July 6, 2008
Sunday morning… Still trying to wake up and working on my second cup of coffee, it's Will and I. Melissa is sleeping. Taking advantage of the small luxuries she is afforded every so often. Will is in a wonderful mood. Running and playing. One of his new friends is his giraffe. He woke this morning in his normal fashion. He is excited to see us as if having been away on vacation. I wonder where he goes in his dreams, but that is another entry at another time. He danced his giraffe around the bed, bending his neck to and fro. After leaving the bedroom, he seemed more interested in playing than he did in Mickey Mouse Clubhouse. I agree, not the norm.
Grandma came out of her bedroom and he immediately acknowledged her, running up and having the giraffe talk to her, as if to say "good morning Grandma." He then grabbed a ball and tossed it to her to initiate interactive play. Grandma, very excited because of this, came to me to tell me all about it. As I sat in front of the computer sharing my own observations with Grandma, we noticed something else. Will had placed his giraffe on top of his rocking horse and was rocking it back and forth.
I have noticed an improvement in his play over the past week alone. Now I don't know how much of these observation are amplified due to my desperation. Amplified or not, I like the way it makes me feel to see him coming back to us from this foggy place where he has lived for so long.
Note: Kevin is the photographer of the family so it is hard to find a good one of those two together. This was one day we took Will to the Yellow River Game Ranch and some ducks were just walking with the boys along the path!

Saturday, July 26, 2008

More Supplements? Seriously?


Well, had a phone appointment with Dr. Sloan yesterday and things are going as planned. We got some test results back and are going to continue to work on his system (liver, belly, etc) for another month and then start
Chelation in another month.

So, 2 more supplements to add to his daily schedule! If it wasn't so obvious that all this was working I don't think I could stick with it. The diet you get used to but the supps are a pain in the butt! Just when you get all the a.m. ones into him then you have to start the p.m. ones!! But it is working and that is what is important!

Now to all those Moms (or Dads) who are trying to figure out a way to get these
supps into their little ones here are the ideas that I have either come up with or gotten from another Mom going through the same thing:

  • Applesauce
  • Almond or Cashew Butter - Usually on some Rice Almond Toast
  • Jelly or Honey on toast usually or w/ a spoon.
  • Fruit Smoothie (We will do these b/c they are nice to hide many supplements in and some of the other choices you can only put one or two.)
  • Refried beans -We use fritos to dip
  • Hummus
  • In juice, almond milk, etc, - I find that if you get the stronger juices they don't notice the supps. (We like the True Blue Blueberry Pomegranate or the V8 Fusion -Will can't have tomato so you have to check the label, the Acai Mixed Berry is good) We try not to give him anything with Hydrogenated oils or corn syrup.
  • Some people hide supps in baby food (but that sicks me out, I know I'm strange)
  • If they are not heat sensitive you can put one pancakes b4 flipping over, waffles, etc.
  • Make your own Popsicles.

There are more choices if you don't have such a strict diet like Will. Since he can't have Gluten, Casein, Egg, Tomato, Peanut, or Soy these don't work for us but are still good ideas.

  • Ketchup
  • Eggs
  • Spaghetti Sauce
  • Yogurt, pudding, jello (Once again Gross!! lol, my husband tells me just b/c I don't like something doesn't mean other people don't??)

Almost a month! Week 4

Day 22
Breakfast: Hashbrowns, Boars Head Bacon, oranges
Lunch: Squash, Zucchini, Snap Peas, Beans and fritos (didn't really eat the squash)
Dinner: hot dog, craisins, gorilla munch cereal (at a party, not interested in eating)

Day 23
Breakfast: Banana, Hashbrowns, Jello, craisins.
Lunch: Ian's fish sticks, oranges,
Dinner: Boars Head turkey, popcorn,

Day 24
Breakfast: Banana and fritos (I need to get the the store)
Lunch: Boars Head Roast beef and turkey, mixed fruit, olives
Dinner: Grilled Italian Garlic Chicken, Corn on the cob, green beans

Day 25
Breakfast: Cherries, Almond rice bread w/ almond butter/honey, chx apple sausage link
Lunch: Green beans, corn on the cob, mixed fruit
Dinner:

Day 26
Breakfast: Chicken apple sausage, rice almond toast w/ almond butter/honey
Lunch: green beans, peas, fritos, refried beans
Dinner: a couple of rice cakes, Popsicle.

Day 27
Breakfast: Cinnamon toast, watermelon, chx apple sausage
Lunch: Hot dog, cherries, green peas
Dinner: Fish sticks, spinach, watermelon

Day 28
Breakfast: Chicken apple sausage, rice almond toast w/ almond butter/honey
Lunch: Boars Head Roast Beef, Green peas, fritos
Dinner: banana, rice cakes

Thursday, July 24, 2008

He imitated!!

A very big deal for us. Will and I were playing and I was making a little action figure walk a certain way and he took the guy and did the same. Didn't make the sounds I was making but all the same it was AWESOME!!

If you have a
Neuro typical (NT) child this would be something that is no biggie, but for Will it was a definite improvement!

YEA WILL !!!

His therapist asked me if I was
surprised today because he sat down with her and just did a puzzle perfectly. He looked where the piece should go and put it there. I told her I am not surprised because I am expecting great things from this little one!!

Sunday, July 20, 2008

Week 3- Really?

I read a lot of people saying, It is really hard but you will get used to it. It's true. Oh its not fun making two meals or using two toasters, constantly reading labels, etc. But it is truly not as hard as I thought it would be. Meat, veggie, fruit... and the convenience items that thank the Lord we have now! The Snicker doodles are a favorite.
The supplements are hard, I won't lie. There are days when I don't feel like making sure he gets his 6 pills, cod oil, and b12 lotion, melatonin (well, I don't mind the melatonin) But remembering how important they are (and Kevin's help) makes it worth it.


Day 15
Breakfast: 1/2 banana, craisins, and piece of cinnamon toast.
Lunch: Steak, green beans, strawberries
Dinner: Dijon Chicken (replace butter w/ gf marg or evoo, replace milk w/ milk sub), rice, strawberries

Day 16
Breakfast: Straw/Banana smoothie, cin toast, garbonzo beans (i know weird right? I need to go to the store)
Lunch: Left over dijon chicken and rice, apples
Dinner: Popcorn, refried beans and fritos (hamburger- wouldn't touch) peaches

Day 17
Breakfast: Banana
Lunch:
Dinner:

*** Had a couple of bad days/ didn't keep track, Will had dr. apts/therapy and I was in self pity mode. Happens.... Did meet a great friend with 2 ASD kids. I definitely think God sent her to me to help (and to make me laugh!)

Day 19
Breakfast: Craisins and Gorilla Munch Cereal
Lunch:
Dinner: Pork Fried Rice w/ soy sauce substitute (and of course no egg),
Dessert: Jello w/ fruit (I personally think this is gross but Daddy likes it! At least it wasn't pudding! lol)

Day 20
Breakfast: Mixed Fruit, Rice Almond toast, sausage
Lunch: we slept through lunch....
Dinner: Peas, watermelon, chicken (still no luck on the chicken)
Snack: popcorn and an olive (random, we were trying to see if he liked it)

Day 21
Breakfast: Hashbrowns, bacon, and oranges.
Lunch: Popcorn, banana
Dinner: Snap Peas, Ians Fish Sticks, Watermelon

Tuesday, July 15, 2008

Frustration

Just got back from taking Will to the dentist. Thank God Grandma went with us because I was a mess when we left. The dentist and the staff are great. We drove all the way to Athens because so many parents of kids with Autism raved about this dentist and their ability to make everything calm and to be understanding of tantrums, etc.

So Will has 4 cavaties. Two in the back molars, and they will have to pull two of his teeth because the cavaties go all the way around. We will have to take him to Athens Hospital to get this done and be put to sleep under general anestsia. I am heartbroken. He doesn't sleep very well. Gets up 10+ times a night and will pull my hair or hit me until he gets a bottle then right off to sleep. Many people have told me just to let him cry or that I am not teaching him to sleep correctly but I am seriously doing the best I can right now. So he has "bottle decay". I don't want him to have to go through this and I don't want the teeth pulled because I don't want him to be different from other kids any more than he has to.

It is going to cost over $2k if insurance doesn't pay. We are waiting to see what they will approve. Another 2k. Every evaluation seems to be over 2k, every training class. I wonder if that is our magic number? Maybe I will play it in the lottery.

So now we wait, not knowing if Will is in pain from this cavity because he can't tell me. It will take at least 2 weeks for the insurance approval to come back, then schedule with hospital, dentist, etc.

My frustration is high lately, so is Kevin's. So much to take on and it just keeps on coming. Still while typing this my sweet little boy comes up and hugs me 3 times and gives me high five, which makes me so happy.

Improvements

So far Will has been Casein free for almost 3 weeks and Gluten, egg, soy, peanut, and tomato free for a week and a half. He has been taking his supplements (we have a hard time with one of them) that Dr. Sloan has given us to help his little system. Here are the improvements we have seen so far:




  • Pointing to what he wants

  • When grandma comes in the room he runs up to her.

  • He has added the following words: Hello, Hot, bye, and has been saying mom and dad more often.

  • He is playing with toys more appropriately.

  • After he does something (stack blocks, something with a toy, etc) he will look at you for approval.

  • I think he finally realized we have pets (two large dogs, five kittens). He was feeding Trip the other day and actually tried to ride on Odin. He has never paid them any attention before.

  • He led me to his high chair the other day to tell me he was hungry. Never has showed me any needs before except his need to go outside. : )

  • Yesterday he tried throwing a ball to a little girl over and over (She was shy and didn't play but that is what he was wanting)

  • He is just more attentive and interactive overall.

We are just thrilled that he is improving and can't wait to see what he does next.

Saturday, July 5, 2008

Supps (Suppplements)

We are having a time trying to figure out how to get these supplements down. Dr. Sloan gave us:

Multi-vitamin
B-12 lotion (my favorite-so easy)
Melatonin
Probiotic
Cod Liver Oil
Dexoification vitamin


The cod liver oil is lemon flavored and goes in a drink, the b-12 is easy, melatonin- no problem....the others not so much.

Today I made him a smoothie- banana, strawberry, and OJ. Threw in some ice, blend, and add his supps. He liked it! I did make too much and he only drank about 2 ounces and then was full. Next time I will know...

Friday, July 4, 2008

He can't eat anything!! -1st week on diet

Well not anything but that is how it feels as I am making out this grocery list. No Gluten/No Casein/No Egg/No Tomato/No Peanuts/No Soy....Good thing my child likes fruits and vegetables : ) - If you live in Atlanta and would like a spreadsheet of what cost what at the different stores just email me.

Day 1

Breakfast: Sliced Boars Head Turkey, a few Craisins, banana, and some fritos. (I know it sounds awful doesn't it... but the VANs waffles I had bought had Soy and I had forgotten to look for that until this morning so without my coffee it was the best I could do.
Lunch: Rotisserie Chicken (plain), peas, and grapes.
Dinner: Lots of green beans cooked in olive oil, some oranges, (I also made him a sweet potato and cut up some avocado but he wasn't interested)
Snacks: A few fritos and a couple of pieces of watermelon.
Drinks: Straw/Banana Smoothie, Tea, Juice,


Day 2

Breakfast: Some turkey and a banana
Lunch: Hamburger with onion (Bubba Burger), sweet potato, green beans

Dinner: Ians Fish Sticks/grapes/peas
Snacks:
Gorilla Munch cereal
Drinks: Smoothie (blueberry, mango, OJ, banana)


Day 3 (Is it day 3 already?)
I went to Whole Foods last night so I have a few more options today. Got some convenience foods. Not as expensive as I would have thought.

Breakfast: Some Gorilla Munch Cereal and a chicken sausage patty
Lunch: Ian's turkey corndogs, fritos, peaches
Dinner: watermelon, rice and beef (just a little)
Snacks:
bit of refried beans, few fritos (I put in his yucky pill)
Drinks: tea, juice, vanilla almond milk

Day 4 (Will's birthday- turned 2)
Breakfast: Buttered (Fleishmans lite) (Food For Life Rice Almond Rice bread) toast, Boars Head Turkey, Banana
Lunch: Ians fish sticks, grapes
Dinner: Corn, watermelon,
Snacks: bit of refried beans, few fritos (once again for the yucky pill)
Drinks: Vanilla Almond Breeze milk, V8 fruit juice
Dessert : I made him a strawberry shake with Rice Dream Vanilla ice cream and his vanilla milk (snuck some supps in there too!)

Day 5 (He had a bite or two of a Pringles chip b4 I could get it from him - has gluten)
Breakfast: Chicken sausage
Lunch: Ians corn dogs, watermelon, gorilla munch cereal
Dinner: Almond butter and honey on some FFL bread, blueberries,
Snacks: Banana Strawberry smoothie (2 ounces w/ supps)

Day 6

Breakfast: Piece of toasted Almond Rice bread, apple chicken sausage.

Lunch: Banana, Some peas, Boars Head turkey, a few craisins.

Dinner: Ian's corn dogs, watermelon, smoothie

Day 7- One week!

Breakfast: Apple chicken sausage patty, gorilla munch cereal

Lunch: Green beans, corn on the cobb, some BH turkey

Dinner: Hot dog, cherries, fritos and refried beans.

Not such a bad week. We have already seen some improvements. (We took away Casein the week before) He is pointing, playing with toys more appropriately and has been running up to Grandma and giving her a hug when she comes in the room. I am very hopeful!!! The diet is not so hard. I will need to start cooking more meals, just a little overwhelmed this week. The supplements are the hard part for us.