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.