Friday, December 30, 2005

"Yeeeeaaaaah...MOMMY! Gooooo MOMMY!" "Hurray!!!!" (Crowd Cheering)

"M"..."O"..."M"..."M"..."Y"

That's exactly what I need -Cheerleaders. Not Cheerleaders in the typical Dallas Cowboy kinda way, but just a small group, say 2 -3 enthusiastic people, that would follow me around all day singing my praises. Some reinforcers tossed intermittently to me would be great too. You know, a new pair of cool pants, some stylish shoes or a quick back rub with a relaxing Green tea ----Oh hell....let's be honest...a Bass Ale. Make that a couple Bass Ale for those LONG days.

This has all surfaced due to an article I read on Http://www.tacanow.com/outsidetherapy.htm about "Dead Time". Dead Time is the time you spend not engaging, utilizing generalization opportunities from ABA therapy or time spent outside therapy. Basically the time your child is not engaged with someone. So, I added up the time outside of our scheduled therapy and generalization we do throughout the day. Wow. It feels like I am all over Gabe, but I am missing about 50% of his day. I don't think I could be anymore on top of him without losing my sanity. So, I spent today trying to fill those voids...The Dead Time. Oh My God! I'm exhausted and there's many more hours in the day.

THAT'S where my cheerleaders would come in. Chocolate in hand, they would toss a Godiva my way when the going got tough. While pulling out another puzzle, I would hear the faint sound of "Your the greatest mommy in the world.....yeah!...You're the greatest mommy in the world...yeah....." in the background. Or better yet, during dinner and Gabe is screaming and pushing away from the table, One would separate from the group and start massaging my shoulders saying...."You've got 2 more rounds....2 more rounds!!!!....He's weak. I can see it. You can do it... YOU CAN DO IT!!!! GO SUPER MOMMY!!!!!"

*Sigh* I'm a busy body by nature, but I also get burned out quick. Can't explain it very well. I guess I would be great at marathons, but useless the week after. Deadlines are invigorating, but constant Martha Stewart - I'm not. I see "Dead Time" as the one hour that I have without kids before I go to bed.

Wednesday, December 28, 2005

What's New for 2006














This is Gabe when he was 7 months old. He didn't mind sitting on Santa's lap, because his coat felt really neat. I don't think Gabe ever "looked" at Santa, maybe that's why he seemed OK with it. Our Santa looked like a 3 pack a day Santa. "Ho, Ho *cough* *wheeze* Ho!"



...Happy Holidays to Everyone! I appreciate how incredibly supportive of myself and Gabe you all have been. These past months I couldn't have gotten through without your encouragement. Best to all in the new year.


2006- What's in store...

We have managed to find outside funding for Gabe's schooling for only one semester, after that, we spend our retirement. He will continue through the same school, but a different program. Through this program, he will be working with two therapists for three hours a day for an entire semester. They will focus on his speech, life skills, generalization, motor, play and group activities such as games, crafts, circle time, using ABA. I will be implementing at home following the ABA therapy that I was trained in through their other program. I can not begin to explain the shear joy of having this opportunity. I am even more thankful after catching a glimpse of more things about about Gabe that have gone unnoticed until this holiday. The Big "A" was out and taking no survivors.

Sometimes it takes new places to really "see" Gabe. His eye contact with people outside our family, requesting things with other people and social abilities all come into perspective outside our realm as a family unit. We watched as we implemented opportunities for generalization and they failed over and over. Am I being too hard on him? Was it a crazy time? Yes and No. Did I give him slack? You bet. But all that we gained had seemed to be replaced with stimming, no eye contact, absent two word requests, gibberish, not eating food unless fed, Is this what it is going to be like outside of our "norm"? How do you generalize when you've "lost" the ability to reach the person? He was gone. Too much noise? Nope. Too many people? Maybe-8 people. It was a slap in the face of reality. I needed it. I had written about Gabe's diagnosis in our Christmas letter to all our family members (except mine, a whole another blog) and I think that helped. He no longer was aloof and ignoring people, he had a reason for his behavior. It eased the expectations.

This Program/School for Gabe is about $9,000 every 3 months (per semester). That's about $36,000 a year. I don't think my college tuition per year cost that much and I went to a state university. I can't go back to work to pay for it, because he has to be picked up around noon everyday and we live about an hour away. I did check back in on the Early On Program offered through the State and school district-No ABA, No RDI, No Floortime, No Kauffman Cards, NOTHING even remotely associated with Autism and its therapies and practices. He would have gone for 3 hours a week, with only a 1/2 hour speech per week for someone who has almost a two year deficit in language. Gabe would be going through the motions of what a preschool setting would entail. My son can barely speak, barely feed himself, and they want to socialize him. I am at a loss for words....

Ooops.....Gotta go....SD has 40 Year Old Virgin in Queue ...I need a good laugh. Take Care!

Sunday, December 18, 2005

One star review...

Restaurante Mommy Review by Gabe
Rating based on 5 stars
Ambiance ***--
(Christmas music, my favorite)

Decor ****-
(Snowman placemats add a nice touch)

Quality of Food ***--
(Mostly Heinz or Gerber stage 3 babyfood
I recommend the Banana Strawberry as an
appetizer, Entree- Green beans and rice)

Service *****
(Outstanding- Milk is always cold)

Authenticity *----
(Very poor-Sometimes food is not what it seems!)

Meet Our Critic - Gabe




We are having the hardest time moving onto table food. This look of pain and angst was created by putting the tiniest sliver of a cooked apple that Gerber has as finger foods on his dinner plate. We pulled out every reinforcer we had. ABA was on high alert and we were going to get him to try it...just lick it..put it to his mouth, ANYTHING. We promised suckers, candy, sugary cereal,whatever we could. He got as far as putting it on his spoon and then burst into tears. Screaming at the top of his lungs, pushing chair away from the table and refusing all food after that.

What's strange is he does like apples. Apples as babyfood only. What is going on here???? He has no problem eating chips, rice cakes, FRENCH FRIES, ice cream, cake, cookies, Licking rocks (See past post "You can take my floaty..") So, he does not have an eating issue, motor wise. I'm at a complete loss. Our old OT did get him to try some things, but we could never reproduce it at home. Or she had so many toys going that it seemed unnatural. We actually tried that route. The toys got expensive, because the stakes were always going up and he would let you feed him, but he was not going to put it in his own mouth-NO WAY! It looks almost painful. I imagine it to be like someone forcing me to eat the mush inside a lima bean or worse a garbonzo bean.YUCK! With a capital Y. I can totally understand not wanting to eat some things, but mostly everything?

To Gabe's credit, he did try by putting it on his spoon. He also has gone from eating only some stage 2 foods to quite a few stage 3 babyfoods the last 7 months. Maybe another year until table food? He still says "Fen Fie?" when we pass a McDonald's, Wendy's or Burger King. I always answer with " How about a burger to go with that?"

Friday, December 16, 2005

On a lighter, more kooky note...

THERE ARE SQUIRRELS IN MY HOUSE!!!































Well not exactly....

Both kids were home all day Thursday, thanks to alot of snow. You know what that means to us? Laundry Basket Day!!!!! My children are free to play in the laundry baskets. Silly as this may sound...even a bit Kooky, but this is like getting a new car to them. Glorious as it may sound, there is something special to these baskets. What makes them sooooo great is not the rock bottom price you can purchase them for, but ...this is the kicker....they have magical powers. How you may ask? Why these baskets??? Asked Boo one day. Because I said they did. And so created the magical laundry baskets.

In the pictures above, my kids are pretending to be squirrels in their "nests". We watched one outside our window for awhile, gathering nuts and climbing trees. Then, Boo wanted to BE a squirrel. How do you play squirrel? Ah HA! I made each one their own "nest", created by the magical laundry basket. They both had a blanket to cover themselves with when I made a winter storm come (I made loud wind noises and tickled them). I got wooden beads out and placed them around the room and they had to gather them and put them in their home. Gabe surprising watched Boo and imitated her. He was having fun, not sure he knew he was supposed to be a squirrel, but... it was too funny.





Thursday, December 15, 2005

Realizations for today

Some realizations that I made today-

1. After watching Gabe's 1st Speech Therapy session from 6 months ago, I realized that through the entire half hour his therapist worked with him he had not said a single word. Not because he chose not too, but because he couldn't. In fact, he had no means to communicate, no signs, no imitations, not even with prompting. I didn't even know my child was completely non-verbal 6 months ago.

2. I read about 30 blogs on Autism daily, some are of children in their teens with Autism, some high functioning, some not. Those blogs leave me wondering, how cute will some of the things Gabe does now like sucking his fingers and screaming in a high pitch be when he's 16+ years old?

3. What happens when the therapy fails?

4. If stimming and sucking on things is a means for my son to cope in our world, who the hell am I to take that away?

5. Is this a race I think we can win? I sometimes think with enough therapy and intervention, he could be mainstreamed, maybe even without an aide. I have days I truly believe that. I forget that Autism will still be at the finish line...waiting. Deep down, I secretly want to believe Gabe will be cured and the unknowing will be over.

6. Am I just teaching correct responses? Does it make any sense to Gabe? Why would he want to put the Fisher Price person in the bed, when it is so much more interesting to put them in and out of the door?

7. Am I trying to change someone I love into something their not? I want to believe that to function in society, you need certain tools. Tools that Gabe is lacking. How do you send your child to the wolves after years of telling him everything he thinks is right is all wrong? That in order to function he has to not be himself. What a lonely and confusing journey that would be.

8. I honestly believe that I have been on a quest to "cure" Gabe the last 6 months. Although genuine and sincere, I have to admit to myself, today, that Gabe will not be cured. He will not be like the boy next door. I saw the difference in that little boys eyes today when he looked at me. He saw me. I don't think Gabe has ever looked at me that way. I think a part of me died today outside in the snow.

Sunday, December 11, 2005

TaaaaaaaaaaaaaDaaaaaaaaaaaa!

The Ginger Bread Houses In all Their Glory.....

One piece of candy....
***Lick***
Two Pieces...
*Lick**Lick*





















Here's Gabe's house. Every piece of candy
was tasted before being displayed!
He had some help from SD (Super
Daddy), mostly just the path.

















Below is Boo's incredibly creative house.
She really wanted to eat the ginger
bread cookies that came with
it. I had to say no, because
she has a severe
peanut allergy.
I never knew I could hate
a little peanut so much.
We found out she was
anaphylatic to peanuts
one year before finding
out Gabe was Autistic.
Talk about a double whammy.















So, every year I buy the supplies to make ginger bread houses. I absolutely love doing this with my kids and highly recommend it to anyone who wants something to do that's festive on a cold Sunday. This year I chose Costco's kit and I must say it is so much better than the Target one I bought last year. It had more frosting and it came with a plastic bottom that had insets where the pieces for the house sat for extra support. Last year with the Target ginger bread house, I used toothpicks and crossed my fingers. It ended up looking like a slanted/shack house. It only lasted about 1 week until Gabe-zilla came. Boo made the only one last year. This year they both made wonderful houses. Gabe did great, although he licked almost every piece of candy he put on it . He also took his finger and wiped part of the "snow" off the roof. It's funny that he doesn't seem to have any sensory issues with candy. Hmmmmmm.

Just a quick note, I was wondering if anyone had any thoughts on this. Gabe has started to suck on his three right hand fingers. It started about 2 weeks ago. We thought it could be because he had a cold and his throat maybe hurting him. Now, we can't get him to stop and his cold is long gone. What's going on? He never was a thumb sucker or anything. Any ideas?

Tuesday, December 06, 2005

I cursed myself

Alright...I take it back. I still mean it, BUT I will only think it than write it. Now can we all just go back to our "normal" lives??? In my last blog I stated that I am thankful for my "fantastically unpredictable boy". I've change my mind. I really have about the unpredictable part. What was I thinking? Actually I do know now...

This is what I was thinking (He's doing awesome through ABA. He's not that different than other 2 1/2 year olds).....But this is what I know now. Since Gabe's diagnosis last March, our family has been living in the "Gabe" world. Everything revolves around him. It gets old after awhile for everyone and the "he needs us" quickly changes to "what about me?"Boo wants to go to a friends house to play, well, I have to bring Gabe. Sometimes I drop her off, but it has to be around "his schedule". If he does come....Is their house safe? Will they leave out snacks? Will he let her play with her friends? Can he unlock their front door? Will he have fun? I had stressed myself out so much about it, that I have left the NT world completely. I didn't even realize I was doing it until I called some of the moms who I used to hang out with a lot to make playdates. They had their kids signed up in activities at the library, swimming lessons, other playdates etc. Everything I used to do. I have been so wrapped up with the training at Gabe's school in ABA that I missed all those opportunities. And after today, I don't think I could do it anyway.

The first time I almost cried today......I was at the library getting ready to check out our stuff and get the kids' coats on, when a group of children Gabe's age start coming in with their mom's to go to their "storytime" at the library. I looked around and all the children were quietly taking off their coats, reading a book with mom or doing a puzzle. It looked like a Norman Rockwell painting....except for Gabe. Gabe had left the children's area and was B-lining to the front door. I caught up to him and he does the limp noodle. I start to lift him up and the screaming starts. I'm now dragging his body back to were his coat is, in the middle of "the painting", and he has his shirt almost up and over his head. He gets very slippery when he does the limp noodle. Finally...coats on....Off we go...Now where did I leave my dignity?????? The librarians at our library do not like to be librarians and snarl at you when you check out books. I took a survey of my friends and it is not just me. I can feel her growl at me while she sloooooowly checks out our books. She's also watching Gabe stand at the handicapped button to the door, continuously pushing it, watching the door open and close.......open and close. Whew....Brrrrrr...it was getting cold in there. Sad to say this, but I wanted the evil woman to feel my hell. I thought she was going to hit me with a book when Gabe just stood there, button pushed, door wide opened. What did I care, she would have her life back when I left.

Second time I almost cried.......Target. After the library incident, I just couldn't go home. It was not even noon yet and much of the day was still left. I thought I would go get the new Fisher Price Zoo that has the alphabet and an animal for each letter
http://www.fisher-price.com/us/littlepeople/products/default.asp?section=village&id=33051. That would surely make the afternoon much more fun! Not there, no zoo. Light Bright? Nope. New playdough stuff? Not much. Yikes. Now I was desperate. Off to the craft isle. Got that...Got that..No good...."Oh, Hi!...." I bump into a great mom that I knew from a mom's group that I used to really be part off. She also has a younger sister that grew up with Aspergers. Last time I saw her, we met at a water spray park and Gabe had tripped and hit his face on a bench. It was bloody and horrifying. That's another moment in my life that I wanted to cry, because I wanted to hold Gabe, but at the time, when he was hurt, that only made it worse. That's a whole other blog.....So, her cutie, who is younger, but somehow actually bigger than Gabe (Gabe is big for his age) is sitting as wonderfully as can be in his shopping cart. What is Gabe doing? Oh, he is trying to scale down out of the cart with wet fruit snacks stuck to his pants. They're wet, because he wouldn't eat them, just liked sucking on them.
"How is Gabe doing?" she asks.
I try to put Gabe back in the cart and the screaming and the stiffness in his legs begin. He will not sit down and his record for staying by me today has been terrible.
I say."Great! His school has really helped him."
I wanted to say..."Shitty! This sucks! Why ? Oh why God is he doing this to me?"
She senses my stress and says "she'll let me go and have a great Christmas!"
"You too.."
Goodbye NT world.

Monday, December 05, 2005

10 Random Things about myself:o)

Here goes... for Irish at Sometimes Holland Feels like Hell (http://2Irishboys.blogspot.com)
(P.S. You have to check out her blog. I read it almost everyday)

I have to post 10 random things about myself and then infect 10 others to do the same. (I'm not sure I can think of 10 more, I don't know many other bloggers. You chose some of the ones I would've chosen...Hmmmmm)

1. I secretly love doing these questionnaires, but can't ever figure out what to write when I get chosen.

2. I would love to wear a pair of those low, low cut jeans, if it wasn't for the "plumber" issue and forgetting where I left my six pack.

3. I used to be part of a group in high school that called themselves "The Squids" because we were so Goth. I think I wore nothing but black for 6 years.

4. I met my husband through Matchmaker.com 6 years ago, because a friend convinced me to fill out the incredibly long survey through that website. Little did I know, that "friend" really wanted to marry me.

5. I wish my husband liked to go out to cool bars and socialize, but then I like how he keeps me grounded.

6. I thought my husband drove a really fancy sports car when I met him, but it was just a 1990 Celica.

7. I miss having short spikey hair, but I'm growing it long again so I do not have to hear from my daughter that boys have short hair. I liked it when she told me my hair was sooooooooo pretty when it was long.

8. I wish I had money for lipo under my chin.

9. I get goosebumps when a room is laid out so that it is not only aesthetically pleasing, but functional. (I'm a geek for interior design)

10. Last one......I think Autism brought my son and I closer. Closer than I thought ever imaginable. Sometimes, in a twisted sorta way, I am grateful that God gave me such a unique and fantastically unpredictable little boy. I do love surprises.



The following have now been Infected- Have fun!
This Mom.com
Mom-Not otherwise specified
Rockstar Mommy
Bloggg
Gretchen's Blog
My Beautiful Child Griffin
Adventures in Autism

Dear Noah
Another Day, Another Diaper

Sunday, December 04, 2005

Hoooray for Fiber Optics!!!Hoooray!





















Both my children have their own tree to decorate. Here Gabe is this year.
He was having a blast putting the ornaments on. It's a fiber optic tree, rainbow lights and all.
Very tacky...we call it "Tack-a-licious!" It is so tacky it's fabulous.
The picture below was Gabe last year decorating his first tree.
We got them both larger trees
because the ornaments were getting bigger than the trees!


























Below is our big tree. All our "good" ornaments are on our mantel, nestled in garland. I just know they are going to touch the tree, so we put stuff on like toys and stuffed animals so that they can. That way everyone can enjoy the tree.














"Oooooohhhhhh....It's beginning to look... a lot ....like .....Christmas. Lalalalalalaaaaaaaaaaaaaa" That seems to be the theme around here. Ever since it snowed a beautiful ,powdery white, we have all been enjoying the initial love of winter. We will build towering snowpeople, sled as if we are in the Olympics, throw snowballs fast from "the pitcher's mound", and slide across the driveway gracefully in our boots, arms outstretched like ice skaters. Oh, the love of winter in December is wonderful. In march, however, the glory has long gone and Michiganders begin to curse at the once majestical snow.














Now, drum roll pleeeeeease........Taaaaaa....Daaaaaa! THE GINGERBREAD HOUSES!!!!!!!! OOOOOOOH and AAAAAAAAAAAAH!
Annnnnd....NOW!
Aaaaaaaaaaannnnd NOW!
NOW!
NOW?
now?
I guess blogger will not let me post more pictures.

Till next time.....
Will we ever see the elusive Gingerbread Houses? Will I ever stop swearing at the computer?
Will blogger see the light that I NEED lots and lots of pictures on my blog???
TO BE CONTINUED.........................................

Tuesday, November 29, 2005

Conversation with Gabe #1

It's breakfast time and Gabe enters room using the more sign.

"More". "More". "More?" he says.

"More what?" I answer trying to get him to ask for what he wants.

"More?" He replies.

"More cereal Gabe?" (Gotta get that two word request in.)

He pauses and looks like he is in deep thought.

Then replies, "More fen fie."

"French fry?" "No sweetie. No French Fries for breakfast."

"Fen Fie!" He looks amazed at himself for thinking of it.

(WOW! Did he just come up with an answer all on his own???? Now, I really wanted to give him some. He had come up with a new food to request for without prompting or labeling. I felt like doing 10 cartwheels, but I'm a little crickety. )

"How about cereal?" I say with a smile.

"Cereal!""Yeah, Yeah, Yeah!" He does a little dance and smiles back.

"What do we need?" I wait.

I wait some more.

"What do we put it in?" "Aaaaaaaaaaa.........?"

"Bowl!" Gabe points to cupboard.

We're getting there!

Wednesday, November 23, 2005

Graduation with Hope

Here are some of the wonderful people that we spent the last 12 weeks with. Gabe and I will really miss seeing them everyday.




Gabe with Jenni and Greta in the Trial Room





Here is my awesome teammate and her very smart and pretty daughter.











Gabe's friend at circle time. He had the cutest smile.











Snack Time










Gabe at Trials having a blast.
Who doesn't love reinforcers????












Here are two more good friends that we met.
This friend of Gabe's was so sweet. She was another "fan" of The Old Lady.
The support there was awesome, especially between the moms.
















I spent an hour and a half driving home today after graduation.(Terrible weather and accidents all over the place) I wondered what we would all be doing in 5, 10, 15 years? There is so much invested in doing this program financially, time wise and, especially, emotionally.I not only learned about ABA through the Hope program, but I met some inspiring moms, that through it all still push forward. They amazed me. Truly inspiring. I amazed myself. I DID IT!!!!!
I wish everyone the best of luck and you are in our prayers and thoughts. Happy Thanksgiving!

Wednesday, November 16, 2005

Me "What?" ...Gabe "What?"

So, this marks the last week for Gabe and I in our ABA therapy/education course. For the past 11 weeks Gabe and I have been going to a "school" for 5 days a week, 3 hours a day, learning how to use ABA through trials, motor, play, group, and generalization. It has been amazing! I have been also implementing at home 5 hours a week. He basically has been receiving 20 intensive hours of ABA a week for the past 3 months and my God has he grown leaps and bounds! I'm so glad that I found something that clicks with Gabe. There are so many wonderful and interesting programs out there. Where do you start? I'm glad we started with ABA for Gabe. I think I also would like to look into adding a floortime program. I met last March with a doctor that studied under Dr. Stanley Greenspan (developed Floortime model). Amazing. I just knew then that Gabe had so many basic skills that needed attending to first. I was thrilled when my ABA training included goals for Play. The whole program was incredible. I will post later more details about where we went.

Today was Gabe's day of testing using the Mullens Test (sp?) through the ABA program. It was great to see him succeed in areas of the test that I remembered him not doing well in 6 months ago. Some he still did not "get". One in particular was a 6x8 page that had a semi circle of 5 black and white line drawings of flowers. Another Flower picture was placed at the curve of the circle that "matched" with one of the flowers in the semi circle. Everything was laid out in close approximation. The question was something like..."Can you point to the flower that matches this?" Gabe gets lost in long sentences. He has a hard time with two words unless it is a familiar command. He could not figure out what she wanted and just started imitating her , first pointing to the flower that she presented, then as she pointed out the semi circle, he traced the path of flowers. He knew he didn't know and was just dragging his fingers over the flowers. Now, if she had said "point to same" or "match" he would've gotten it. He mastered point to picture through an ABA program. He loves to match and sort. I know that the test has to be given a certain way, generalization is so important, but where does compensation for language difficulties come in? He probably heard..."Blah,blah, blah........this." He was able to do all the imitations very well, because they have little if any instruction except "Do this". He tacted some familiar objects, but again he does know what an umbrella is, but can not verbally tact it. If you had a field of three common objects and one of them was an umbrella and you asked him to discriminate by pointing to it, he could. Oh well.

The hardest part of the ABBLS, I find, is the very clinical questions afterwards for me. Does he say 5, 10, or 20 words an hour? Does he count in a row or can he count objects? Can he do novel actions with objects that he can imitate with? How many objects? 5? 10? 20? How many things can he discriminate/tact...20?50?100? Would he know what to do if a child asked him over to play? Would he engage? Would he know what to do? Would he talk to them? What would he do if someone took something from him? Nothing? Want it back? I think I cried after answering the first ABBLS questions 6 months ago. I left the Center thinking I had no idea my son had Autism for almost 2 years and now I can't tell you if he runs smoothly, alternates feet on steps, or jumps? I thought "Where the hell have I been the last 2 years of Gabe's life?" I felt like a failure of a mother, especially to Gabe. It hurt so deeply. How could I have failed someone so bad that I loved so much? I went out the next day and started two of the many journals I now keep. One was about his eating (what he ate, how he ate it, symptoms, and strategies we are using to get him to try new foods and to feed himself), Social journal (Strengths and weaknesses, "Ahha! moments and "What was that about ?"moments) . I need to start a language journal, but between ABA data, this blog and the other journals, I'm a little journaled out.

As I mentioned earlier, Gabe loves to imitate now. Especially Boo, our 4 year old daughter, Maisey and spoken language. Here's something funny that happened recently. First, I have to tell you that Gabe is learning to say a two word request "Give______" or "Want_______". It is a labor of love....but we push on. We have to prompt him by saying the word "give" he responds with "Ga" then says what he wants. Sounds like this...
Gabe "Milk!"
Me "Give"
Gabe "Ga"
Me "Milk"
Gabe "Milk!"
Me "Say Give Milk"
Gabe "Milk!"
The other day it went like this...
Gabe "ZZIPS!" (chips)
Me "Give"
Gabe ?????
Me "What?"
Gabe "What?"
Me ..laugh"No"
Gabe "No"
We both laugh.

Monday, November 14, 2005

Barney is my new hero


This past weekend was our annual trip to the mall to get our family picture taken. After the haircuts, outfits and gas to get there, think we spent enough to remortgage our house again. Well, not exactly, but it sure feels like it! But, I just love the pictures. Not so much of me, I'm slouched over holding Gabe in the pictures so I look hunchback or I was put in back of the family like I was standing at the peak of the summit. I gotta laugh at myself. My hair looks good though. Anyway, they used Barney to get Gabe to laugh. He loves Barney (Bah-yee). He took the best pictures out of all of us. Boo is always a cutie, but I think she felt shafted when she did not sit on daddy's lap this year. She is getting so tall. She was trying out some new and creative ways to smile. Too funny she is.


Don't you just want to give Gabe a squeeze? We call it a squoosh and tickle. Helloooooo, Mr. Handsome. It looks like he his touching his "Beep Beep"(What we call his bellybutton sometimes) We had a good laugh when we noticed that.

Tuesday, November 08, 2005

Did I say that?

Ok....here goes......I called someone on the phone from the insurance company an asshole. I know...I know...I know. Should I get the noose for myself now? I'm sure that's a HUGE red mark on our file. It reads...Beware.... Irate and uneducated mother. Worse yet, it will be on my son's file. They can be so damn cold. I swear that they would claim no coverage if Santa got in a sleigh accident with one of his reindeer. Who the hell trains these people? Retired Nazi's?

Alright......Here's how it went in a nutshell. I have called numerous times with diagnosis codes, any code and all codes that I needed...I had codes for everything. (sounds like Dr. Suess) Blue codes, red codes, green codes, upside down codes, rightside up codes, nodes like codes. Anyhoo.... I do this, because many doctors that provide services for Autism in our area are highly qualified and degreed, however choose to be out of network. (Fun for us, but understandable) So I would give these codes and find out, yes it's only covered 50% of the ALLOWABLE amount. (Gotta love that) Most of the time, I was given the allowable amount, albeit miniscule.(Like $50 out of $175) It's very helpful in budgeting what we can plan for for Gabe. Today, I was given the 3rd degree about how I should not be receiving that information and who did I talk to. This is after 9 months of getting this info. Did they honestly believe I was going to rat out my source????? They probably figured it out now. So, on and on we go back and forth about this amount that they seem to determine after deciding if you deserve it. On top of that, they will not tell me how much I will be receiving through this mysterious "allowable amount", that's between the doctor and them. That says a lot right there. The conversation was mixed with tears and frustration, lying and deception on their part and an unbenounced asshole slipping out of my lips. It escaped when they wanted to put me on hold AGAIN and transfer me to the even colder auditor. Asshole I guess that was my way today of saying "No thank you".

Sunday, November 06, 2005

The beauty that is Fall


Gabe at Halloween. He LOVES Buzz Lightyear. He refused to wear a costume, so here he is in his cute PJs.





I swear he is getting more handsome as the days pass. Both Boo and Gabe have the most beautiful eyes. SD has long eyelashes, but those eyes! Where did they get those gorgeous eyes? Just incredible.

Anyway, there is cause for celebration, a pause to reflect and time to push forward. Gabe turned 2 1/2 years old on Saturday. We are amazed at how far he has come and saddened about how much further we have to go. SD (Super Daddy) and I promised ourselves that we would have Gabe off of baby food by the time he was 2 1/2. He has made progress since we made that promise, but it is yet another battle. I'm not sure we can do this one right now. It sometimes feels like the clock is ticking so loud in my ear that I feel dizzy and stressed to the max. I find myself clenching my teeth a lot. I didn't notice it until I was biting down so hard one day, that my teeth began to ach like I had been chewing gum for 15 hours. I can NOT go to a restaurant when he is 3 years old and start feeding him stage 3 from a spoon. I just can't. Believe it or not, I just can't do that. The grunting from excitement, still warms my heart, is it noticeable? You bet, but he's so squeezable, you overlook it. The temper tantrums, well, that can easily be tallied off on the "He's a boy" list. Thank God for that list! But, the eating is another whole dimension and it just outright sucks.

So, here's the deal. Gabe is capable of feeding himself from a spoon, fork and cup - Beautifully. We have started to have him pick what bowl and spoon he wants to eat his baby food with. He also gets to choose the baby food. ( Still Stage 3) Mind you, he has only chosen Banana strawberry( Nana- Ba...NANA!) But, it's a start. He is reinforced after EVERY bite with a reinforcer type food (Veggie Chips or cereal) along with loud praise and a little tickle. (We are huge supporters of ABA for OUR son- It may not work for everyone) Felt like I had to put a disclaimer there. Sometimes ABA supporters can be labeled as ABA militia, I am not one of those people. :o) Anyhooo...It seems to be going well, however, mealtimes are lasting FOREVER and he is not eating as much as he would if we were feeding him. I guess he will catch up when he is hungry enough. Right now we are only doing it during breakfast and dinner, because we are in transit during lunch. Gabe's ABA school is an hour away and BOO has to be picked up at preschool about an hour after he gets out of school. I can make a deal right now with him, that if the baby food is in a bowl and he feeds himself, we can all just take one deep breath for now.

On the flip side, Gabe's school is ending in 3 weeks and I must say I am quite comfortable with ABA and the way it was taught at the Center. The people were fabulous! I don't even want to think about what it is going to be like when Gabe and I do not go to "school" there anymore. Whelp.....Can't talk about that....I feel a lump in my throat and an ulcer in my stomach....Onward...

SD and I have hit some very rough patches through all this. I think Gabe's condition (?-that's sounds odd) really magnified all the crap that we had put on layaway, but never picked up. Kind've like that tote in the basement that has all your old bills and junk from college. You know you should go through it, throw it out, hell, your sick of moving it every time you need to get the Christmas stuff out. But, you just keep walking around it hoping it will go away. SD is my very best friend. I told myself that I would never marry unless I married my best friend. But, he sure can piss me off. I have moved the "tote" closer to the door and placed a pretty bow on it and with a note that reads.."For better or for worse...let's make it better."

Sunday, October 23, 2005

YEAH FOR THE GEEK SQUAD!!!


The Geek Squad at Best Buy was able to save our computer. HOORAY! The pictures are finally in...well some of them. I have hundreds that I have yet to actually put on paper. Enough of my gibberish....Here's to Halloween!



Gabe loves to paint. I started calling him Picasso. He said "paint" the other day when he saw the paint brushes on top of the fridge. It was more like "ain". We put glitter on the top to finish them off. They look awesome. He looks like he is having some serious thoughts on composition and the function that color is going to play in his "piece".











Here's Super Daddy carving his pumpkin using the Master Carver's template. I can't help but laugh at our own sensory issues. SD is about dying inside from having to touch the pumpkin "guts". Doesn't phase me though. Funny. It turned out really cool. We bought a light that changes colors to put inside. Spoooky!

Boo' s pumpkin is sooooooo cute! She had a couple of faces on it, but this is the only one she didn't paint over. She was in an extra silly mood, because the grandparents were over :o)

Wednesday, October 19, 2005

Is there a world outside the "Big A"? And can I get a drink there?

I feel a little out of sorts (as if you could'nt tell by my last blog.) It's hard to see the look of desperation in the eyes of the wonderful moms and children that are at Gabe's school. Every month a new group of two children leave (3 groups of two are rotated at a time), after 12 weeks of training in ABA, play, motor and group. The parent is trained and is given further support afterwards through two meetings a month. We are all wondering about what kind of "support" if any we will have after we "graduate" from this program. I know I am. Tuition was very, very expensive and for most of us, our only shot. I guess it kind've tipped me over the edge yesterday. Two moms graduated 2 weeks ago that I knew and 2 more are soon to go also. Tomorrow seems so scary to me now. I take nothing for granted anymore. I wish this intensive and whole child learning could continue at least until he is 5 years old. Most intensive the first 5 years of life they say. Gabe is now almost 2 1/2, I have 2 1/2 more years to go. That's good and bad. Maybe we'll luck out again and win the lotto or receive a scholarship. Who knows..... I'm rambling now...

I also am fraught with angst over not having any pictures to post, because they are all on the other computer that is on the cahoots. Thank god for the lap top, atleast I can blog. Nonetheless, being a visual person, I miss the way a picture pulls you into the lives of the people you are reading about. Oh well....hopefully the geek squad at Best Buy can retrieve everything off our hard drive.

Today seems like it was not very eventful. The only thing cool that happened, that isn't about the big "A" or my children, is XM radio's station, The Loft. Very cool this morning. Suzanne Vega (not her hits, but other great goodies), Fleetwood Mack, Hmmmmm, what else? I just know my toe was tapping and I wasn't listening to the Toy Story soundtrack. Gabe seemed Ok with it too. I need a stiff drink or a night on the town, I just read my entry........when was the last time I got out????????

Monday, October 17, 2005

Autism = $$$ = Michigan

So up here in the "great" (cynic chuckle) mitten it has been noted by many sources that Blue Cross Blue Shield (http://www.detnews.com/2005/health/0504/27/A01-163979.htm)
has one of the worst coverage for Autism in the country. Where insurance leaves off, the school districts turn their backs. You know what is the biggest kick to the throat? The fact that BCBS offers more to other subscribers in other states! I know that states can legislate coverage, but isn't that a little strange that one state stipulates coverage, but another is free to thumb their noses up at their struggling masses? Can I open my mouth and scream discrimination now? If it is proven relevant in other states why should I have to lobby for something that has already proved to be right? The whole system sucks. Here is a prime example, A school district that is a hop, skip and jump from mine was sued for not providing an "appropriate education" for a child that had autism. That family won and now ABA is offered in that district. An aide works exclusively with your child implementing ABA. Now here's the twist, as a parent YOU have to ask for it in you IEP and on top of that NO ONE mentions it as an option. My family does not have the money to hire a lawyer, so Gabe will go without ABA in his district. How can that be fair?

I am so envious of those of you that mention how your "Play Coordinator" comes to work with your child or how ABA is provided in your school district, or maybe that RDI may be implemented as a possible educational tool after meeting with a cool TEAM of professionals. I know in terms of therapy provided we have a long way to go, but count yourselves lucky that you have something to fall back on. After 5 more weeks, it's all me. All of Gabe's education falls on my shoulders.

Let me introduce myself again...My name is Kristin and I am a Play Coordinator, ABA Therapist, Floortime Expert, Motor Coordinator, Occupational Therapist and Speech Therapist. I'm from Michigan and it SUCKS!!!!!!

Saturday, October 15, 2005

Why the change...

I've decided to change the name of my Blog for three good reasons ...Here they are...

1) Although, initially, the poem I named my blog after seemed incredibly inspiring at the time, now seems passe and doesn't ring true to where I am currently at in terms of how I view Gabe as a PERSON who happens to also have Autism.

2) My trip with Gabe didn't go to Holland, I awoke from my wine stupor from the night before on a gondola floating through Venice with my beautiful son, who was ALWAYS my beautiful son.

3) Gabe said his first three words together today....Guess what they were....
READY, SET, GO!

and off we go!

Tuesday, October 11, 2005

I WOULD'VE NEVER GUESSED I COULD DO THIS

Six months ago I alone discovered that my son held a secret. A secret that would forever change my life. It's strange how it all came together and it still seems to linger and give face in new ways through testing and milestones that slip past our fingers. I lost a beat, a moment in my life when I heard that word, that little secret that tumbled from an acquaintances mouth out into the open air, just drifting. I didn't know at the time how often I would hear that word again and how many more times I would have to say it. I hate that word and it burns in my gut that I have to deal with it, along with the biases that accompany it. What's funny is there are old words that have become new,wonderfully beautiful words that I cherish when applied to my son like "typical", "normal","appropriate". These are words that are tossed and hit around a pediatrics office like Opening Day. To me they are the biggest gift under the Christmas tree, the brand new bike, a great sundae. Those words are the new secret that I share with myself when others say them in passing not knowing how they brightened my day. They are my new fireworks. That is what I heard while she was attaching electrodes to my son's head today for his EEG and I had to lay on him to restrain him. I asked is it always this bad with this age? She replied with,"That's typical." My son is typical.........(smile).

Sunday, October 09, 2005

The good things in life



Yesterday, while my daughter was being a beautiful ballerina at dance class, my son and I set off on a detoured ride to Costco. We took the long way on the dirt roads, dodging potholes and letting our voices bounce to the bumps. Half way there, I set my XM radio to Frank's Place, Gabe and I were off on a magnificant ride through the sugar maples. Life could'nt get any better. Or could it?

Well, it did in so many ways that day. Gabe ended up falling asleep. His hand was firmly holding onto his sandwhich bag of popcorn. He cracks me up. You'd think he was holding onto a bag of gold! Anyway, we landed in civilization, ie the "mall area". You can clearly notice this by the parting of the trees and the abundance of burning bushes.

Costco, God's gift to those of us who swear that we really could use a 3lbs bag of dinosaur chicken nuggets along with Tommy Hilfiger dress pants at half the price. But, the BEST thing about Costco is by all accounts their buttered pretzel. It comes dripping in butter, all doughy and larger than a man's hand. OOOHHHHH...it's SOOOO GOOD! All for a mere $1.01. So, a fountain diet soda is a must alond side it. Gabe had his almond crackers and watered down juice, and I had my cholesteral special. Life was great. We picked up a few small Christmas gifts (Cold weather =Christmas shopping) and back home through the trees with Frank we went. Glorious.

Did I mention that my son ran up to me saying "Mommy"? He did. He truly did. Will it be a one time deal? Who knows. But, I took it with a teary smile and deep warmness in my heart that only your children can give you. Yesterday was a beautiful day.

Monday, September 26, 2005

HE IS Not Fine Period


ARRRRGGGH! Now, I need to vent about somethings, but I am weary about how it could be taken. I really need to know that I am not the only person out there that is dealing with this. Here goes........ I am so @@###!!!! tired of hearing from family that Gabe is fine and he will grow out of this "Autism" stuff. They stare at me blankly when I talk about the wonderful strides that Gabe has made in the first month of ABA therapy. I have heard that he is just a "little behind" and that this ABB...or ABBA....YES! ABA therapy has been referred to as ABBA...like the group!!!!! That the "quack" stuff I am doing can NOT possibly be helpful and that my husband and I are wasting our money on "helping" Gabe, because they honestly believe that he will just "catch up". One person said,"I knew someone whose daughter didn't talk until she was 3 years old and just started talking in sentences one day." Are these the new Urban legends. *****POOF! ****Autistic children everywhere will turn around and and magically grow out of it . Gabe is on the mild side of Autism, in fact he is very smart and tested so. But, he screams Autistic when you say "Hello" and wave and he looks right through you or anywhere else around the room. He sometimes AVOIDS eye contact unless you get in his face. There are so many more signs that he is clearly PDD-NOS, but I digress. He is as Autistic as his hair is brown. Why can't they see that? Now, most of you may say in their defense that they are trying to be supportive. Maybe, but to turn and look the other way and hope when you turn around that the "BIG A" will be gone is like putting a carrot on Gabe's plate. It will never be eaten and it will never go away no matter how much you say "MMMMMMM...GOOOD..GABE....YUMMY CARROT."
*
*
Why is Autism such a dirty word? Don't tell your insurance company that your child has Autism because they will soon have to "evaluate" your claims. The school system will try anything not to provide a curriculum that is specific to Autistic students, because it is too expensive ( Want to add services to your IEP - cross your fingers or get a lawyer.) People do not know what to say when they find out your child has Autism, except "I'm sorry" and then followed by "What is Autism?" It is an epidemic, Autism, and people do not know the signs????? How many more people are being told what I was, that their children will just grow out of it. It scares me to think of the children not getting ANY therapy or services because of lack of support. Very scary indeed.
*
*
One last thing and I swear that I will get down off this pedestal. I am going to let the next person have it if I am asked whether Gabe was affected by thimerosal or if I believe he genetically developed Autism. Now, coming from other parents that have children out there that have children with Autism, I will happily share that information. I think it is important to share our experiences. However, a lot of people outside our realm, if you will, believe that thimerosal couldn't possibly be responsible for Autism. Hell, THEY don't have Autism and they had the same shots (We know that our children had more and in a shorter time span). Now, I have to add that Gabe is genetic, we have traced it to my brother and had A LOT of tests done, but it pisses me off to no end for people to make idiotic comments about something that they have not spent, weeks, months and years researching. Most of us know more than our doctors. We are continuing looking for answers while our pediatricians meet at a conference to discuss the most important topics that concern their practice and at the top of their list is not Autism. So, why the hell do they think they know more than us???????????
* BREATHE....
*BREATH.....
Just needed to vent....not offend...just where I am at. If you have an opinion, feel free to post. But, remember that my son is 2 years old and was only diagnosed 6 months ago. I am fragile to harsh criticism. I am wading through quicksand here and my head is barley above water.

Wednesday, September 21, 2005

30 HOUR DAYS


Oh, if I only had more hours. Just a quick note. I promise to write more in a few days. The schooling with Gabe is amazing, but it is kicking my butt in regards to the time and effort. I LOVE ABA THERAPY!!!!!!! I do not think I can say it loud enough or spread the word fast enough. Gabe has bloomed into a little boy that can UNDERSTAND what he wants, what we want and what the world is just beginning to offer him. I am totally amazed and am throwing myself full mind and body into this. I do not think I have ever worked so hard for something in my whole life. But, I can't wait to see where we will be in 8 weeks. I am so ecstatic about where he is now! Cross your fingers for us and send some little prayers our way. Thanks!

Sunday, September 04, 2005

Gabe and "The Finger"







Gabe? Look Here! Say cheese!

Gabe ? Gabe! Over Here! Over here Gabe.

Smile. Look here. Gabe. Gabe. Gabe?

AHHHHHH! I need a faster camera!

That's when we got "The Finger".

It is almost virtually impossible to get a head on shot of Gabe. I could be doing cartwheels while holding my camera and he may look at me and laugh, but by the time my camera clicked, he would have already turned away. It's like he knows. The camera and him have an understanding. It can take as many pictures as it wants, but Gabe absolutley does NOT have to look. I'm wondering if "The Finger" is Gabe's way of telling the camera "I'm WATCHING you". Does anyone else seem to have this dilema? My daughter LOVES the camera. Can you tell?

I am planning on writing more about Gabe's progress a little later. I hear Gabe crying upstairs and SD (Super Daddy) trying to console him. Gabe's crying is a wonderful thing right now. He is crying because he misses me :o)

Katrina





*********I'm not quite sure what to say about the situation down south after Katrina hit, except, that I know I should say something. Actually I have a lot to say, but am refraining due to the focus that I aim to keep on my blog. I tend to zip my lip when it comes to politics. There's a raging fire ready to burn when the mention of politics seems to seep through even the most neutral statements. So, in light of that, here are the two charity websites that our family donated to. We pray every night for the saftey and welfare of those affected by this tragedy.


www.UnlockingAutism.Org
and click on Gulf Disaster Relief

http://www.redcross.org/

Thursday, August 25, 2005

Wiping the sweat from my brow

I wanted to post a picture for this, but just could'nt think of one that could portray the angst I dealt with today. Yesterday was Boo's first day at preschool/daycare. I had to enroll her in a different program, starting this year, due to Gabe going to a program for ABA (5 days a week, 3 hours a day, 12 weeks)and my training to continue it after it has finished. All her friends, and mine, remain in the previous preschool. What's funny, is that I am having a harder time with the transition than she is. I do not know the kids or any of parents. I wonder what she is "learning" and how she is truly managing. She does'nt seem to be playing with anyone when I pick her up. If she is by some kids, that's just it, she's just sitting BY them. Boo is very outgoing and extremely likeable. My heart sinks and my throat begins to hurt. I am trying so hard not to cry. I stayed at home and gave up my career to be with BOTH of my kids and now here is one in a preschool/daycare. I think daycare can lend ityself to being very benificial in the development of a child, but I really miss being part of her preschool years. My husband will be going on all of her field trips with her until December. Those are my favorite times, the apple orchard, Fire station, all those cool experiences.

To top things off, Gabe has really made the dropping off and picking up of Boo almost unbearable. It is so difficult, because of four major factors. #1-We have to walk past the playground to get to her room. #2 Her room has a door that goes directly to the playground #3 We pick Siena up when she is outside on recess #4 Gabe is REALLY ready for a nap when we pick her up. I can't change times due to his nap and when we would be returning from his program. If I did, she would have to be picked up after his nap, which adds an additional 3 hours onto Siena's time in daycare/preschool,more $$$ and less time with Boo.

So, this is what we tried today (We have 5 days until we start the ABA school). I let Gabe play a lot oustide on the swing set and he played for about 10 minutes at the playground when we picked her up. Most of the four year olds are great with letting Gabe play along, but he is two and a bit clueless when it comes to play etiquette, so the welcomed invitation quickly expires. That's when I give the last bit of countdown and try to herd him inside. I end up throwing him over my shoulder kicking and screaming, while my daughter is complaining about how tired and thirsty she is. She is also filthy and has rocks stored any place in her clothes that she can manage. (Those are always fun to pick up around the house.) Boo has spent the last two days playing in the dirt on recess. I should not have gotten those cute outfits at Gymboree. If I knew it would've been jeans and vacation tees!
So, I get him inside and he starts walking on all of the sleeping cots that the kids are about to sleep on. Boo can not seem to muster the strength to get her backpack (on wheels!!!) and I feel like ending it all in the play kitchen area with a plastic knife.

I grab Gabe, screaming again, and hand the rolling backpack to my weary daughter and practically run to the car. Gabe is stretching out his arms against my chest and kicking my pants down my waist. (He weighs a solid 36 lbs.) (God help me...God help me...) Now, if that all sounds rough......This is the kicker. Gabe no longer wants to peacefully get in his car seat and he has the power to stop me. I did get "The Look" from a passing parent today. "No I am not hurting my child...Thanks for your concern," look back from me. I can not get him to fold in the middle! He will not put his butt down! It is as if he has become some piece of treated lumber from Home Depot! How am I going to get home??? Bend Gabe bend! Sweet Jesus!!! BEND!!!!!!!!!!!!That's when I took a deep breath and started to laugh. I thought if this is what I am going to have to deal with, I will have to really find that hidden strength in me. I know deep down that this maybe just a glimpse of what is soon to come. We all know that our children on the spectrum change and grow just like other children, but ours have many more obstacles to overcome in areas of behavior and understanding themselves and the world around them.

It took an obscene amount of strenth and determination to get him buckled in that car seat. The shrill screaming that prompted Boo to say over and over, "It hurts my ears!", the smacks at my hands and kicks to my arm, we left that parking lot. Gabe finally succumbed to defeat and the shrill screaming stopped about a block away. What am I going to do tomorrow????

Monday, August 22, 2005

Fashion Victim


I can't seem to get enough of pictures. Thank God for digital cameras!!! Here my son is being the victim, yet again, of a mother and daughter fashion attack one rainy day. Isn't he cute? He is wearing a Pill Box hat I used to wear in my teens when I went through my Gothic/Retro period. I think he was almost one here. I looked everywhere for the picture of Gabe wearing a very flowery and full tutu. I could've just squeezed him he was so cute. I asked SD where the pic went and he swears that he doesn't know. Sounds suspicious to me.This is what happens when you are surrounded by two girls that have a bunch of cool clothes, but don't want to dress up themselves.

Anyway, I wanted to talk about how great Gabe is coming along in his speech. He is adding words like crazy and seems to be mimicking/repeating two word phrases that we say. Now, I know that can be good and bad, but when your son hasn't ever talked, we'll take what we can get. He uses these phrases without prompting too and in appropriate situations. Don't I sound like I've read just about enough on language development. (lol) Those phrases are "All Done", "Good Job", and "More Eat". These phrases sound more like "AAAAA..Done", "Goooo...Job" and "MO..EEEE". He also is adding beginning sounds to some new words and is learning quickly sounds that animals make. We went to a dairy farm today with some friends and he kept saying moo to all the cows. He even fed one!

Well, my husband and I are about to watch another episode of season two of Survivor. So, I wanted to leave you with these pictures. If you have read my blog post "Gabe's Quest For The Four Seasons," This is yet another spot in his room that he finds very comfortable.

Thursday, August 18, 2005

I'm Going Cross-Eyed


The results are in! We are relieved and overwhelmed at the results, but nonetheless, we now know. The allergist did a pretty comprehensive allergy screening. I must say that I was extremely impressed with the elaborate questionnaire we filled out before we met with the doctor. They also performed the test very quickly. Gabe was such a trooper. We thought ahead and brought the DVD player so he could watch Toy story 1 and 2. That really helped. His whole back was marked with pen and red marks everywhere. They did a few under the skin to confirm some of the more borderline results.

Gabe is allergic to wheat, soy, egg, sweet potatoes, tomatoes, garlic (scored a 4),peanuts , chicken, cats, dogs, potatoes, and some type of mold. He was not allergic to milk, but we think he may be lactose intolerant. At home we found so much in our cupboard had to go. Even quite a few baby food jars will have to be donated. My daughter cried when we threw out the Golden Grahams cereal.Gabe saw them when she was eating them and was not happy when he could not have any. We initially bought them to use as reinforcers when Gabe ate.

Today, I went to a store in town that has a gluten/casein/wheat free section and found some things. I found that some of the foods would work great, then read on and they would be processed on the same equipment with peanuts, or trace amounts of peanuts or egg, soy or milk. So, I'm trying to keep tabs on what is acceptable and what is not and whether it has peanuts or trace amounts or a peanut skipped threw it or would Gabe actually eat it and OH MY GOD! OH MY GOD! OH MY GOD!(Mind you)I had to take my daughter to the bathroom 3 times during all this. I did go cross-eyed at one point. Maybe it happened right before I felt my daughter tapping on my forehead, while I was muttering "No wheat, no wheat", yelling "I HAVE TO GO POO POO!"

This really is not all that new to me (I've been a lacto-ovo-vegetarian for 16 years). However, I'm reading labels now for three separate people with various dietary needs. After awhile I was just reading and would look back at what I read with no clue if he could eat it or not. My head was spinning. My daughter kept asking "Can I get my special school treats?" "Now?" "Now?""Now?"

I made a deal with her that if she was a good helper, she could pick one kind of special lunch box treat for school. She got to pick from three prechosen, mother approved snacks. It made the whole experience go smoother.

My sleeping lately has been horrible. I think I get a few hours in each night, but toss and turn the remaining. SD (Super Daddy) told me I had dark circles under my eyes and prescribed a nap today. I actually took him up on it, guilt free. I let the kitchen floor be dirty, toys stayed scattered all over the house and I even slept with all my makeup on. I just was too tired to care.

What's on my plate now? Here's what I got so far; starting an incredibly intensive ABA school with my son in two weeks, my daughter (we call her Boo) goes all week to school with all new kids in 4 days (Hoping the teacher takes us seriously on the "Peanut Free" with her), getting Gabe to eat using ABA, figuring out what to feed Gabe, another test for Gabe that will measure how fast his stomach empties (still has GERD), Preparing for the battle in October with my school district on what I believe is a "Good Education" for Gabe with statistics, PT,OT and Speech reports and 5 intensive reports from highly qualified doctors that label him as being Autistic ( The school district refused to change Developmentally Delayed to Autism last year even with 2 qualified reports from doctors) and my husband goes back to work for the new school year in 5 days. Maybe I'm being a bit Global in my thinking, but I am very overwhelmed. I know all will work itself out and I will make it through, but I feel really spent.



Tuesday, August 16, 2005

Saturday, August 13, 2005

$$$$$$$$$$





I think I am at my wits end. I went to my ABA conference today (Day 1 of 2). Gabe will be attending a "therapy/school" for ABA starting in September. He will be going for 12 straight weeks, 5 days a week for 3 hours each day. I will be implementing at least one hour at home each day also. This program is centered around training the parents for using ABA at home. So I will be attending with Gabe. It has been very exciting and very stressful. If you had read the Newsweek about Autism or watch any of the NBC affiliates' reports on the Autism Epidemic, you would have seen or read about the families going in debt to pay for special therapies. Well, that would be us.
I sat in class trying to calculate the payments each month for three months, then the consultations that are required after finishing the program that happen up to 4 times a month at $150 a pop. That's you guessed it...$600 per month. My husband is a teacher and I was also for about 7 years. We are not, by any means, wealthy people. We decided to use the equity in our home to pay for this program and also to provide a good preschool/daycare program for my daughter through our school system. (I had to find somewhere for her to go while I was at school with Gabe) You know what really sucks( I can't think of a better word right now) is that this is our only chance. We will have used all our resources. Can't the insurance companies see how helpless we are in providing this type of care???? My husband actually has the best health insurance in our state for teachers. His school district is one of maybe three in the state that has not had their's taken away. How sick is that? An insurance for teachers that turns it's back on children???
I'm at a complete loss. What's funny is that this program raised their tuition $3,ooo after we signed up. Thank god we signed up before that, because we wouldn't be able to afford it. They try to emphasize that they want it to be affordable for everyone. Who's their everyone??? Birmingham? West Bloomfield? Grosse Pointe? (These are very elite areas in MI) I know some programs cost $30,000-$80,000, but these programs are doing a real disservice when ANY child with Autism is excluded. Programs don't run on IOUS either. Bummer, because I made a really pretty one out of construction paper today. I even used some glitter.