Fresh produce is best

Off Gabe and I went to do our weekly grocery shopping. He did great, but was a little antsy towards the end. I think it was due to him laughing and talking up a storm at 2:00 AM. Sleepiness was rearing its ugly head around the lettuce heads. I always let Gabe out of the cart to say "Hello" to the lobsters in the tank and sometimes it can be difficult getting him back in (The cart is overflowing and heavy by now). Today I had a difficult time getting him back in at the lettuce heads.

He towers over me as he stands up in the seat, refusing to slide his feet into the holes in the cart. BUT, what was really cool ,was amongst all the shrill screaming (it was loud) I calmly and patiently waited and guided Gabe through the ordeal of sitting down in the seat of the cart. I also realized that I no longer felt "the stares". The "stares" and the "Tsks" no longer were heard or even mattered to me anymore. I have graduated to the "I am OK and satisfied with my parenting!" Wow. I never thought I would get to this level. I have always been insecure, who hasn't, but nothing makes you check yourself twice than parenting.

So, after getting Gabe situated in the cart, we continue shopping. He admits defeat and we start getting some fruit. First to the bananas. Gabe has started an eating program at his school. He still eats only stage 3 foods, but feeds himself and we are able to provide him a well rounded diet of fruits, meats and vegetables. The problem exists where the food leaves the puree Heinz or Gerber Baby food consistency and meets table food. So, our first food to "transition" is his stage 3 Gerber strawberry Banana mixed with mashed real banana. Oh the day when he will eat real food! Our next milestone that we will be working very hard on, taking data and everything. I can't wait. This will be a big one :o)

Anyway, I'm getting off track. Off to the bananas. Hmmmm, have to be somewhat ripe to mash. I wonder, while I pick them out, if he knows what we are using them for. As I am pondering that thought, Gabe reaches over, grabs a banana and takes a bite.

WHAT?!!

Then he bites again.
Not once, but twice with the peel still on!
What's with this produce section?
So, quickly I peel the top part of the banana open and hand it over.
Here, eat it like this...... (Big mommy smile)
Could there BE anymore anticipation....(use Chandler's inflection from Friends)
Then....He looks at me, shocked that I defaced a perfectly good banana and says with vigor......

"ABSOLUTELY NOT MOTHER!!!"




No, sorry, that's not true.
But, his "No" sure sounded that way to me.

Not a typical day for me

A couple things that happened yesterday that I now can laugh at:

9:00 AM -My day started out with Gabe hanging on a door knob for 4 minutes crying and screaming, because he wanted to go back to a room he was not supposed to be in.

10:00 AM Sitting in my OBGYN's room #2 wearing a napkin for a top and a paper towel for a mock "skirt?" for an entire HOUR only to have to leave without my yearly check up.

11:15 AM -Possible accident #1 -Almost getting backed into in the OBGYN's parking lot.

12: 23 PM -Possible Accident #2 -Almost getting hit by someone who was speeding past a cop at an accident.

12: 30 PM-Possible Accident #3 -Passing on the right, because I thought someone was having car trouble in my lane, only to wonder why everyone in that lane was giving me dirty looks. Where was all this traffic coming from? Why does everyone have a flag on their car?.....OMG! I cut off a huge funeral procession right by a cemetery. I couldn't lean down far enough in the driver's seat.

2:30 PM- Nerves frayed, I went to Dairy Queen for a refreshing Blizzard. I was almost home. I made it! So, I ordered a small vanilla soft serve blizzard with Heath and pie crust crumbles, top with whipped cream.YUMMY! The vanilla soft serve was not working and Chocolate gives me reflux.

3:00 PM -indigestion from chocolate blizzard

The promise to myself

The goal I set for myself today was not to be intimidated by Gabe's Gastrointestinal Doctor. I call him Dr. Sarcasmo. In order to be able to follow through on my promise, I made a mental agreement to myself before the appointment to do the following things:


1. Keep eye contact -Don't shy away you deserve to be heard
2. Have a prepared question list -Sometimes you forget because you get flustered
3. Do not leave until you are satisfied with ALL the answers to your questions. Who cares if there is a waiting room of people and Gabe just pooped, you need the answers NOW.
4. Demand answers to your questions. If he doesn't know, make him say it in one way or another. It's not up to you to know everything about this doctor's specialty. Make HIM accountable.
5. Hold my end of the conversation- take turns at "the podium"
6. Get "The bottom Line" -Circle talk is unacceptable. What is the next course of action?
7. Tell him to fix his room if he shows/says that he is uncomfortable with how Gabe is touching things in his room. He did this last time and I actually apologized for my son touching things in his child unfriendly room. Not this time.
8. Emphasize that you are not a "testing maniac". All you want to know is if HE thinks HE has done all he can for Gabe.
9. Dish back some sarcasm with a smile. If he can give it, he better be able to take it and believe me, he's FULL of "it".
10. Demand a copy of all tests administered to Gabe and not just the cover letter explaining the outcome/results, get the actual reports. We will not be returning.
11. Start a binder with all his medical tests and paperwork. You need to start being the liaison between these doctors, because they can't seem to step up to the plate. Take your binder to all appointments and get copies of EVERYTHING. This will make your doctors very uncomfortable. It may make you uncomfortable, especially if you are not a wave maker. Just say it is for tax reimbursement at the end of the year.

By the way, I did all that I promised myself today, each and every one. I even told Dr. Sarcasmo that he needed to fix his heating register. He made a comment when Gabe tried to stick his cars into the register that was missing parts of the grate. So, I said he should probably get that fixed, ("Don't you think so?" I said. Especially since you work with mostly children? *touch of sarcasm*) He made some lame excuse, but I said it and I was right.

Gabe does not have Celiac Disease according to this doctor. YEAH! He was tested and is normal. Dr. Sarcasmo did not,however, have a solution to Gabe's reflux, but assured me that we have done all the tests appropriate for his age and the Prevacid is protecting what needs to be protected. It took about 45 minutes, but I got my "Bottom Line".

I felt absolutely wonderful when I left his office. Gabe isn't healed, but I sure felt like I was. I stood my ground, got my answers, and did everything I needed for myself and treated Dr. Sarcasmo respectfully. We won't be going back, but I sure will miss the look on his face when I held my own.

Can we live here?

March couldn't come soon enough last year. We had found an incredible place to get Gabe evaluated. They had a team of qualified specialists. A TEAM!!!! GoooooooOOOOOOOOOO TEAM! Each of the four spent one hour each evaluating him. That's four hours total over the span of a couple weeks! Then, they spent an additional hour comparing notes about Gabe and their findings. I felt like I had found a place where I could be led in the right direction. I felt safe there. Here was a place where I didn't feel like I was spiraling out of control with no way to help my son. I would not only get the answers I needed, but they had resources and opportunities to help Gabe.

What is even more amazing, is that after their evaluation, I could continue getting support through their program that focused on parent teaching of ABA with one on one training with you and your child. WOW. They were not going to hand me a huge and costly report, shake my hand and show me the door. There was continuity. There was hope. I was ready to do whatever it took to get Gabe the help he needed. I could go on and on about this program. Hell, I wish I could live there. My whole family. Gabe's therapists are like family to me. Oh, I am about to cry. So.....alright..let's move on.

The ADOS. This was the first of the four tests that Gabe would be given through the evaluation process. The ADOS is a standard test that is used in diagnosing Autism and other PDD disorders. Gabe was 2 months shy of 2 years old (22 months). We sat in a 8x8 room that had a table. SD and I sat in two chairs on one side of the room and the Autism Specialist began in a chair on the adjacent wall. She had all kinds of fun things to engage Gabe; bubbles, toy frogs, cars, and some cookies in a canister. All these miscellaneous items would soon reveal quite a bit about our son. Sometime during the eval, Gabe took the canister of cookies and tried to figure out how to open it. He wanted those yummy cookies. He kept licking his lips and pulling on that lid with all his might. He never turned to anyone for help. It was as if we weren't even in the room. I had no idea that he really acted as if he was all alone. Couldn't he see me sitting right there? But, he never did and he eventually lost interest in the cookie.

The other thing I remember was the doll and the birthday party. She had taken out a doll and a plastic cake. They were going to "celebrate" the doll's birthday. She started singing "Happy Birthday", while the doll sat next to the cake.
"Let's sing a song Gabe," she cheered.
Gabe was the least interested in this activity. He wanted nothing to do with the doll and wondered where the bubbles had gone. He engaged really well with the bubbles.
"Bubbles. Bubbles. Bubbles" he repeated.
My heart sank and I wondered if Gabe ever knew I was there at all.That I would do anything for him, even if he never asked.

We did have two signs of hope from Gabe in that hour. He acknowledged us once while we were there by putting a blanket on his head, taking it off and shouting "Boo!" to us. The other was a beautiful imitation of a frog hopping on the table with the specialist leading. Those two things may seem small, especially to those outside the "Big A", but they gave a glimmer of hope and possibility for Gabe. He could imitate, the foundation for everything I believe, and he could be engaged.

The rest of our journey continued through this program and still does today. I honestly never want to leave. I have a group of people that care and work very hard with Gabe in helping him to be the best he can be. He loves going there. He gets hugs, kisses, plays, snacks and learns new things everyday. He is the type of person that loves a mental challenge. That's why I think ABA works so well for Gabe. He is in a loving environment, it's consistent, and it's mentally challenging. If mainstreaming wasn't so important, I would try to keep him in this program forever. They are the village I want to help raise my son.

I think this is where I am going to end my reflection on our beginnings with Gabe's diagnosis. I originally wanted to document the step by step process, because I remember wanting so bad for someone with experience to lend a hand in showing me what to do and where to start after a diagnosis of Autism. I would've loved a mentor. Now, I look to other blogs of people for advice and strength. I hope that I gave a large enough glimpse for someone who may need a candle lit in the dark.

So, I'm stopping here, because halfway through the three entries I wrote, I became more interested and excited about the here and now. How great Gabe is doing, how strong I have become and how proud I am of my son, myself and my family. I have too much to celebrate to dwell. It's time to move forward.

My advice through all this.....
Trust yourself. If it feels wrong, it probably is.

And....As my fellow coworker once said to me,

"Kristin, You attract more bees with honey than vinegar."

I tell myself this every time I call the insurance company.

Net + Plastic Tote+ swinging = A screaming Gabe

The month of February is coming to a close. This month started off with a sad acknowledgment that Gabe has been diagnosed with Autism for an entire year now. When I look back on that incredible turn of events in our lives, it seems almost as if someone came into our house last February, took our little baby boy and switched him for another child. I now know that Gabe is the same wonderfully magnificent son that I have always wanted and loved. But, that's how night and day a diagnosis for Autism felt to me. Our lives had an intruder we were totally unaware of. There was something that hid within my child, lurking around every corner where I could not see it. What still angers me the most, is that the people who knew about this "intruder", Autism, did and said nothing. All the signs were there. ALL THE SIGNS WERE THERE. It is still so raw within me. Gabe would've been diagnosed at one year old if someone, anyone listened to me that something was wrong. They seemed to have an explanation for everything and what bothers me is that they still do, right or wrong.

I did tell my husband after a week of staying up till 3 AM reading online. I had begun to start writing in journals about Gabe's eating, talking, behavior and information about Autism. I was writing, making phone calls and crying all day long. My daughter, Boo, began to stutter. The stress and saddness enveloped our family.


The school system saw Gabe first, because they had the earliest appointment I could get. The Special Ed. teacher came to my house and talked to me for about 1 hour for the intake. Then the OT,PT, Speech and Psychologist came for a meeting at the school to observe Gabe for a half an hour. A half an hour! I can't eat lunch in a half hour and they were going to give their "diagnosis" of a possible neurological disorder to my son? Disappointed doesn't even begin to explain how I felt.

During that time, each person in the observation group would try to engage Gabe. The PT took a toy away from him and put him in a plastic tote that was surrounded by a net and proceeded to swing him as he screamed. After finding that the swing wasn't such a good idea, the PT took off his shirt (Oh no) and slapped his cold body on a pilates ball. What did this all show me? Well, that they have the ability to really piss Gabe off to the point where he was screaming and huddled in a corner after 15 minutes.
The team then turned to me and said "What do you do at home when he is like this?"
I wanted to say, "Well, I don't normally strip my son down, roll him on a ball and throw him in a swing."
BUT,
this is what I mustered, " Just let him calm down on his own. He does not like to be touched when he is upset."
Then I got the stares.
Oh great, another opportunity to cry.

We left with a diagnosis of Developmental Delay. I knew they were wrong. Gabe was delayed in speech and social skills, but because he didn't stim to their specifications, hand flapping etc, he was not Autistic. Gabe carried around two of something wherever he went. It soothed him. Two balls, two cars, two
Polly Pockets. Even I saw that as being unique to Autism. I left knowing that I would have to wait another month until I had some real answers. That was the earliest appointment I could get with a team of specialists in Autism through a leading hospital.

One month later on my birthday, he would be given the ADOS.

(to be continued)

"You never know what you need till you find it, and that it maybe the one thing that changes everything "(CSI)

It was one year ago this month that everything started coming together. Scary to think that in one week, the past year and a half of my son's life began to unravel right before our eyes. It started as a comment made in passing by a mom in a local Moms Club. She was obnoxious and loud, but I owe her. I owe her big. Really BIG. She put the word Autism out there where I could hear it.

We had been at a local gymnastics place with a group of moms. Boo was having a blast and Gabe was everywhere. He was 1 1/2 years old and I felt that he was going to be the end of me. I could not rest. I was losing my friends and I did not see any other moms chasing their children like I did Gabe. "What was up with our genes!?" I thought to myself. My daughter was nice, easygoing, a true people pleaser. She would break into tears if she knew you were disappointed in her. Gabe had no idea you even cared. He didn't care.

When it was time to leave, I was helping Boo with her coat and shoes and Gabe took off. Sweaty and tired, I ran after him and eventually pinned him between my two legs. He started screaming....LOUDLY. I am a very patient person, but I didn't think that I could do this anymore.
That's when I heard "Hey Kristin! I've got a kid leash in my car if you need it."
It was the loud mom. She really was trying to make light of the situation. What was kind've weird was that I was about to take her up on it, but knew Gabe needed to be carried, as always. The leash would've been useless.
She quickly quipped, "My friend used it for her son that was Autistic and forgot it in my car."
Gabe needs something that an Autistic child needs? My stomach lurched and I quickly thought about something else.

The next day I got online and looked up Autism. Gabe didn't line up toys or spin, so I thought whew. What got me was when I started calling his name and he never responded. NEVER. No matter where I stood, no matter how close or far, he never flinched, smiled or acknowledged me there at all. By the time SD (Super Daddy) came home I was crying and screaming my son's name to no avail.
He thought we should get his hearing checked. I hadn't even mentioned to him that I had suspected Gabe was Autistic. I could barely admit the possibility to myself. I read the word over and over online, but wasn't ready to say it.

That same week, we received our weekly Newsweek magazine. On the cover was a baby and the word Autism, BIG and BOLD. Why did I keep hearing this word? I was beginning to think that God was now shouting at me. I read the article over and over. I hid it in my nightstand drawer. I didn't want it to be a part of our lives....but it explained so much about Gabe. So many questions had answers now. But why? After all I had survived in my childhood, was this a way to repay me God? Why my son?

Why?

why?

why?

(To be continued)

The Artsy Side of Gabe

Thanks Steph at ( Kindergarten, Hearing Loss, PDD -Oh My!) for two very cool pictures.

Three weeks and counting....

My family has been sick for part of last month and now halfway through this month. My husband had it the worst, next was Gabe with high temps and the big "D", then me with this feeling that I could vomit any moment, but never do and Boo being tired with an ear infection. Yuck.



Gabe is all smiles all the time. Even at a temp of 102 with diarrhea, he is laughing. The only signs he gave us were loss of typical appetite, runny stools and he felt warm. That's it. He was not sluggish, unhappy or tired. This only heightened my fear that Gabe could be very well "hiding" other illnesses. I heard someone say recently that if it doesn't bother him, like the bloating of his belly, it really doesn't need to be addressed. Again, I was flabbergasted at such an absurd comment. His reflux doesn't "bother" him that we know, he doesn't show any signs of discomfort, but it doesn't negate the fact that it was burning his esophagus every time it came up. That's why I kept at the GI doctor until he agreed to putting Gabe on Prevacid in order to protect his esophagus. With all the medical technology out there, why is it that doctors and specialists are so reluctant to use it?

I feel that I have to research what I think could be the problem with Gabe, then bring in enough research to back my claim, and then what I suggest the treatment should be. Does that sound right to anyone? Does anyone else feel that way?

Anyway, we have another appointment with the GI doctor within the next week and a half. If I do not get the answers I want, I will have to get another GI doctor. What just sucks about that is that they want to do the tests again under their supervision. I do not want Gabe to have to drink Barium again and also have the scope done in his Upper GI. I think that there are only a few things worse than watching your child having a medically intrusive procedure done before your eyes. I just want the reflux to stop, his belly to stop being bloated and to move on. Hopefully we get a better answer than "Some children grow out of it and some don't. " That sounds more like "I don't know what I am talking about so I will just blow this up your ass." Wish us luck.

Houston.....We have three words!

You heard right...

THREE WORD SENTENCES!!!!

(Crowd cheering)

They are as follows....

"There you go"- (Deeya Go!)

"Wait for me" - (Wahe me!)

"Daddy get cereal"- (Daddy geh cereeral!)


This is all from a child who was nonverbal/noncommunicative last June, only 8 1/2 months ago.


Way to go Gabe!

Developmental Milestones

Lately, I have been taking time out to look at Developmental Milestones for both of my children. Boo, my daughter, will be taking the Gazelle Test for admission to kindergarten. She's doing great in regard to her milestones. Boo's showing a lot of interest in spelling, letters, numbers, math and has an awesome imagination. I think she will be ready for kindergarten this fall. Because of her late birthday, we had some hesitations.Boo will still be four when she starts for about a month. I think she'll do wonderfully, especially with 2 years of preschool under her belt.

Gabe is doing fantastic. He is flying through his ABA programs. They said that they only need to show him once and he knows it. Sometimes they probe to find he already knew what they were going to teach.I always assumed Gabe would be very smart and quick at learning new things. He comes from a long history of engineers, chemical and electrical. He was born to figure out how things work.

So, here are the milestones he reached for his age from nnnc.org. I found that the milestones from nncc.org were more thorough in explaining the various areas of development. I find it helps me to gauge where Gabe is and what we need to focus on when I can compare him to other children his age. In order to get the services I believe Gabe needs, I have to first know where he is falling behind, doing just great or maybe just needs a little fine tuning.

This is how I rated the skills
+ MASTERED SKILL
* SKILL EMERGING
- NOT YET

By 3 years of age does your child:
Gabe will be 3 in 2 1/2 months

Motor Skills

+ Feed himself (with some spilling)
+ Open doors
+ Hold glass in one hand
+ Hold a crayon well (Tripod)
+ Wash and dry hands by himself
* Brush teeth on own
* Fold paper, if shown how
+ Build a tower of 4-5 blocks
+ Throw a ball overhead
+ Tries to catch a ball
+ Put on shoes, but not tie laces
+ Dress himself with help
- Use toilet with some help (He sits on "little" potty dressed)
* Walk up step alternating feet
+ Walk on tip toes if shown how
+ Walk in straight line
+ Kick a ball forward
+ Jump with both feet
* Pedal a tricycle

Sensory and Thinking Skills

+Recognize sounds in the environment
+ Pay attention for about 3 minutes
+Remember what happened yesterday
+ Know what food is and what is not
* Understands what "1" is
- Understands "now", "soon", and "later"
* Substitute one object for another in pretend play (Block as a car)
-Laugh at silly ideas (Like "milking" a dog)
+ Look through a book alone
+ Match circles and Squares
+ Match an object to a picture of that object
+Match objects that have same function (Cup and plate)
+ Count 2-3 objects
* Avoid some dangers, like hot stove/moving car
+ Follow simple one step commands (Can follow 2-3 step command)


Language and Social Skills

- Use 3-5 word sentences (Uses 2 word requests, some 2 word sentences)
-Ask short questions
- Use plurals (Dogs)
+ Name at least 10 familiar objects (He knows about 250+)
*Repeat simple rhymes (sings songs -clarity of words is about 35%)
+ Name at Least one color correctly (He knows about 5)
* Imitate housework or help with simple tasks
-Ask to use toilet almost every time
+Enjoys being read to
- Talks about feelings and mental states
-/*Demonstrates some shame when caught in wrong doing
(He will shuffle his feet, walking towards something he's not supposed to, occasionally looking back to see if we see him. Does not understand "No")
+ Try to make others laugh (He tickles our feet)
+ Defends his possessions (Only what he is playing with)
*/+ Play spontaneously with two or three children in a group (Pretended to be a dinosaur with 4 other children during playdate)
- Assign roles in pretend social play ("You be the mommy")
* Knows first and last name (Knows his first!)
- Understand "I", "you", "he","she" (I'm assuming-not sure-he uses "mine")
+ Believes everything centers around him ("if I hide my eyes, no one will see me")
- Answer whether he is a boy or girl

Extras

-He knows almost all 26 letters in the alphabet,but 2 or 3 letters.
-He can count up to 10, but knows the rest of the numbers to twenty but 11 and 12. He doesn't get why they aren't two-teen and one-teen.
-He can sing about 10 different songs.
-He knows about 10 different books.(He can "read" them to you)

Preschool

In Gabe's last meeting at his ABA School, a discussion emerged about what our plans were for him after this program ended in August. I was thinking enrolling him in the ECDD Program(Early Childhood Developmental Delay) through our school district. The Behavioral Specialist that runs Gabe's school believed that Gabe would do great in a regular preschool with an aide and to look into that instead. Wow. I was in a daze. I felt like I won the lottery without ever buying a ticket. It seemed so out of the scope of where our hopes were.
"Now, how would that work?" I asked.

That's the most important question you need to ask yourself as a parent thinking of mainstreaming your child. Because, in the Special Ed. classroom, your child may be getting limited services, good or bad or both, but they are at least being overseen by someone with knowledge in the area of what your child's needs are, an aide could be anyone. Let me repeat that....ANYONE. They do not have to have knowledge about anything that applies to your child. Most do not have a background in Special Education or education for that matter. They are underpaid, no health insurance, no seniority. What kind of quality aide do you think you will receive from a school district that is floundering to stay out of the red?

Exactly.

Now, I know there are absolutely awesome, caring, very intelligent aides that bring wonderful opportunity with them and bestow it upon the child they help. I knew a few where I taught. BUT, those are few and far in between. I have taught in 3 different districts for close to a decade and most aides cared, but did not provide the quality help that a specialist could. Could I leave my son with someone unqualified in education AND Autism?
Yikes. I shiver at the thought.

Gabe's ABA School suggested that I find an ABA specialist to be his "shadow"/aide and have the district hire them for Gabe.
"What?" I thought. "How do I do that?"
Oh, the whole idea of me going to the School district and asking them to loosen the purse strings just for me, well...sounds a bit unrealistic. But, I'll try. Why not. Should be interesting.

Did I mention that Gabe has to be potty trained to attend most preschools? The ECDD Program he does not. He has shown interest, but is a bit peeved when I pull down his pants.
He looks at me like, "Mother! What exactly are you doing!?
He does not like to take his clothes off out of context. If it is not breakfast or dinnertime, or bath time, there is no reason that Gabe can see to remove his clothes. We have been instructed, through his school, to work on this. That means to strip him down a few times a day, whenever. lol Poor Gabe :o)

So, we will be looking into potty training in the summer. This fall, I think I will sign him up for 2 ,1/2 days a week through our school district's preschool, maybe they can hire me to be his aide (Hmmmm) and then he can attend the ECDD Program the other 3, 1/2 days. Not sure. That's the plan for now.

Now, that we are creeping up on attending public school, I feel more anxiety. I know the environment we are embarking on, I am crossing my fingers that it will be as wonderful as Bud's (Mom NOS). Those fabulously, awesome teachers are out there. I just hope we find ours.

Moving on with a different focus

Sometimes it is easy to loose sight of what it is you set out to do. There are so many distractions. Distractions like trying to appear "normal" when you clearly feel like a trespasser on NT turf, trying not to blink your eyes so the tears don't fall from hurtful comments, just trying to breathe in the new skin you were given after the old was ripped off your body. That is where I was getting lost. At first, it is easy to stay on the path, especially when you are in shock. Shock from receiving a diagnosis that has no cure for your child. You miss most of what is going around you. All I could think about is how to get help for Gabe and pull our family back together. I did not even imagine the reaction outside of Boo, SD, Gabe and I. So, here I am almost 1 year after I said to SD, "I know Gabe has Autism." I've spent the last month or so loosing sight of my son, loosing sight about who I am and what it is I need to do. I am here and I am on the path, IPod in hand, walking shoes on. I am ready.

Here I go...one more time...but...so much wiser.

Pet Peeve #1

Pet Peeves, things that just get under your skin and fester until you feel like your head is going to explode from being infected. Rubbed the wrong way, whatever you want to call it, I have a few. The act of the crime stays with me for days. I just can't seem to shake the offense. I keep repeating "Let it go, let it go....(drifting back to the offense in my mind)...DAMMIT!"

Here is my Pet Peeve #1

#1. Stupidity at it's worst about Autism.
The tilt of the head, the "Ah huh", the turn to whisper later about how she didn't see that much of a difference in my son, the look of sure..."Kids like him need all the help they can get", the shouting "Hi Gabe!" as if he is deaf, "Oh, I'm sure he is doing better," said with an unconvincing tone.

One of those people is my neighbor. She seems convinced that my son is somehow mentally inferior to her son and the entire NT world. He has Autism, that's it, nothing more. His future is still unwritten, there is great hope, as with any child. I hate it, I hate it, I hate it. I wish I had the nerve yesterday to tell her off. That her tone was hurtful. But, I didn't. I was slapped in the face between the "How are yous and What have you been up too." She is uneducatable about Autism and its effects on my son. She is uneducated. But, she was someone I thought before the diagnosis was a friend.

Sometimes I wonder if I am on the Spectrum, because I do not get people.

P.S. By the way neighbor, your son is short, waaaaaaaaay too short. See someone about it. See. I kept THAT to myself.

Inhale,Exhale,Inhale

As you know, Gabe's school is about 45 minutes to an hour away from from our house. On three of the five days, Boo goes to preschool and the other two days Boo and I bond. She has speech, we play board games, color, go to a gymnastics center for open gym time (very cool), have an "inside" picnic and run errands. I surprised myself by filling in the 3 hours Gabe is at school with not just "stuff", but quality time. I also promised myself to take 2 of the days and focus on myself and shopping with no money was not an option. It was challenging at first, because there isn't enough time to go home. I had to fill the time with fun things to do in an area that all I knew had to offer were really cool bars, antique stores and art galleries. It had been many years, not to mention BC (Before Children) that I hung out in that area. But, I managed to add exercise, at last!











I put this picture in for my blogger friends from NYC.
We went this past May with BOTH kids for a wedding.
Gabe loved to turn the air conditoning on and off in the taxis.
The taxi drivers did Not like it. lol
Central park is much bigger than I had imagined it would be.
This is a beautiful place to walk.


I miss exercising. I used to run and walk a few times a week in a park that was walking distance from my house. I not only miss it, but I need it. Not in the "Oh, I need to loose weight." But, mentally I have to. It is the best way for me to relieve stress. Without it, I feel yucky, my pants are tight and I eat too much ice cream. I visit a mall nearby, before the stores open, turn my IPod up and walk as fast as I can for 40 minutes to an hour, 2x per week. I look crazy with my hips swinging wildly side to side, arms pumping, red face and hair blowing. I told SD that I swear there is a trail of sparks behind me when I walk. The faster I walk, the more animated, the louder the music, the better I feel when done. If I am feeling extra crazy. I get a lowfat caramel frappuccino when I finish. Ooooooooooh! I'm sooooooo crazy! lol

Now, what have you done for yourself lately?

Flipping a coin

Hmmmmmm....Which is harder........Peanut Allergy? or Celiac disease? I'm now throwing the spatula in the air, laying on the kitchen table, arms outstretched, ready for my crucifixion to begin. Why don't we just crawl in a hole away from civilization and just eat dirt.

Where did this need to pack up my family and live in a hole far, far away come from? Just plain eating of food. Period. What is my divine escape at the end of the day, could possibly kill one or both of my children. Am I being global in my thinking, maybe. I do tend to let my thoughts create an avalanche in my life. But BOTH, peanut allergy and Celiac Disease???? Come on!

Today at Gabe's pediatrician, I discussed with the head doctor a few concerns that I have been having. (Did I tell you that each and every time I have to remind him that Gabe has Autism and was premature? Shouldn't that be TWO red flags on his folder? You'd think.)Luckily, we only see him when we have concerns that we believe the other doctor missed. They are great with getting to the bottom line, but you have to know who to ask and trust your gut. Anyway, I have been talking about Gabe's big belly for about a year now. This time I put together this equation for the doctor...
Autism+prematurely+constant reflux+big belly=Something is wrong!
I had my ducks in a row and it paid off. On Monday , I will call his Gastrointestinal Dr and ask if they biopsy for Celiac Disease during his upper GI scope. If not, blood tests for Gabe and the family. We have to get a blood test, because it is genetic and we could have it and not know. Yikes.

I am relieved in a way that we can cross off another mysterious symptom that Gabe has, The Santa Belly. But, saddened at the idea that maybe it is yet another diagnosis that carries the tag of "life long condition".

The Flirt

Here is my "lady's man". He looooves women. Tall, short, dark hair, blonde hair, all shapes and sizes. If you flash him a smile, he's all yours for a quick tickle with a giggle. You could argue that this is true for most children and I would tend to agree. What makes it unique for Gabe, I believe, is that his flirtatiousness comes as a surprise and it will be what saves him. It sets him apart from the limited diagnosis he was given. It sets him apart at his school, at the doctor's office and therapy. His flirtatiousness = Hope from people outside the diagnosis= hope for Gabe.

We all have a need for closeness, to bond, share experiences with someone and children make those experiences so easy. They give hugs, kisses and smiles in return for the smallest things. Gabe brings a pleasant surprise when you hear his diagnosis of Autism. Many people envision the limited scope of Autism to be a person hidden within a shell of themselves, nothing more. Gabe's interactive, smiles and is engaging. He breaks the stereotypes that the "Big A" carries with it. In fact, we have been asked by some of Gabe's specialists (not Autism Specialists) if he was Autistic, because he is such a flirt. "Oh yes." "He fits other criteria," I respond. But, how wonderful his smile is.

I think his love of women began with him and I spending hours and hours together learning ABA through the initial ABA program. We bonded closer than I ever thought we would. There were also 10 great female therapists in that program that he swooned. Then it grew to include our wonderful speech teacher Dr. Karen ( Sometimes I wonder if he would rather go home with her!) . Now that he goes to a private ABA school, that's filled to the brim with awesome female therapists, the attention is endless. He spends his time there working hard with women willing to snatch a quick tickle, hug or kiss. He has learned early how to use the gift that God gave him. He manages to get a little more time, a little more attention and a little more love. When it is all said and done, that can add up to a lot.

Our Off Shore Accounts

*

Yesterday at Gabe's "school", a couple came in to observe. This happens a few times a week. It is one of two ABA "school like" private programs offered in southeast Michigan, so there are a lot of people interested in the program. Phrases like "waiting list","high demand in the summer" and "typically not covered by insurance" were being discussed. I couldn't help but watch as they went from room to room. I wonder if they were thinking what I had when I toured through, "How would we pay for a program like this?" "What am I willing to sacrifice to get my son the treatment he needs?"
I felt a little woozey. Will their child be taking Gabe's place in 3 months?"
















*
I sat down next to my old partner, we paired up parent/child in the preprogram to this program, she was talking to me about all the doctors around the country that she consulted for her daughter. She's doing shots, chelation, ABA after school, the amazing list goes on. Did I mention that she works full time? She's giving it her all. I really admire that. I asked myself, "Was I willing to make the same sacrifice with money, time and sanity for Gabe?" Time can be managed, Sanity-I haven't felt sane since the diagnosis, and money......well, that something that's pretty set, either you have it or you don't. We do not.

However

We have decided to start warfare on our retirement IRA. Our savings is gone. Since the diagnosis, we have drained an alarming amount of money from that account. Thanks Blue Cross, Blue Shield. Penalties to use money from our IRA are HUGE and it's considered income...(Can we say penalized again????!) After that is gone, there's nothing left, I swear.


But

Can I get a cheer for intensive ABA for another semester = 1 full year in the program :o)

HOORAY!!!!!! HOORAY!!!!!

HOORAY!!!!

Looking Forward

Calls, calls and, Oh Yes!, more calls. I need a secretary!
In a previous post (What's new for 2006) (My first Link!!! HOOORAY!!) Anyway......I mentioned that Gabe would be attending a private school through a hospital that specializes in ABA. It is a program that can be attended if the child is between the ages of 2-5 years old, not self injurious, has graduated from the parent training program and you have a lot of money to spare. Unfortunately, we are not sure what happened to our off shore accounts, eyes rolling, therefore falling short of the last stipulation. The grandparents have already made arrangements for a 3 week family vacation this summer, so I guess that is a big hint that Gabe will not have funding for the summer semester.(They graciously supported the current semester). Three weeks out will not enable him to continue onto the next semester anyway. Attendance is mandatory, unless sick and I think they allot for 1 week of vacation time. Where do we go from here?

I have spent that last week trying to plan a new strategy for Gabe's therapy, educational perspectives and activities for motor and normal social play. *Ungluing phone from face* Luckily, this private school that Gabe attends has given me valuable connections and ideas of where to go after the great majority of your money runs out. Don't get me wrong, you STILL need money. Because, it really is the bottom line.

Michigan, what a crappy state for special education, has decided to start closing down all the Center Schools. I'm not sure if this is happening elsewhere, but here it means that certain school districts within a county specialize in areas of special ed. For example, one specializes in educating severely, multiply impaired, another school district has an autistic Impaired program, I think you know where I am going with this. Our county has decided to close some of these Centers and mainstream them into the regular school. One of the "impairments" they have chosen to target is their AI schools. I literally gasped on the phone when I was told this by someone who was the secretary of The Special Education Services Department . I almost couldn't catch my breath.
"What is going to happen to ALL of those children with Autism?"
"Do you know how many there are? One out of 166 children are born with Autism. " I wasn't yelling, I was more in shock.
There was silence. Then he said, "I'm not aware of all the details. I'm not the person who you should talk to about this, but here is the director of special ed services in your area. "
I wrote down the number knowing I will probably never call it. I will never call it, because I wouldn't have a clue how to make the conversation productive.

So, I was considering taking the route of sending Gabe to the public AI school 30 minutes away,
but they have already closed the elementary age program. I'm not sure they would've taken Gabe anyway, he may have been too young, too mild, and too smart= mainstream. But, they have FREE ABA. Oh well. All this information led me on a totally different path.

Ideas for now...

1. We will continue ABA at home (7 hours of trials per week, play/motor incorporated through activities throughout day, 2 meetings per month with consultant $300 to keep programs current) Maybe invest in finding an AWESOME tutor to pick up some time. It's hard to find someone I think is worth the money, because I feel that I was taught by the best and I notice when trails are not done correctly. I have already noticed some major errors in the school he is currently attending. I deeply miss the teachers in the training school for ABA that Gabe and I attended. They were truly the best in ABA.

2. PPI, Preprimary Impaired, program through school district that would go 1/2 days, 4 days a week- FREE, but no ABA, would work on basic social skills and working within a "public school environment".

3. Continue intensive speech therapy, increase from 2x to 3x per week.

4. Swimming Lessons :o)

5. Add PT to therapy if we can find a place that is not 45 minutes away. Gabe is on par with kids his age, but lags slightly in some areas. Work on riding a tricycle.

6. Finding an eating specialist to work closely with us and Gabe. The school he currently attends is developing a program for him. I believe they will be successful, but time is of the essence.

7. Maybe adding Applied Verbal Behavior to therapy. I have looked into going to a conference.

8. RDI ? Gabe is really showing interest in people and expressing himself. He said hi to another little girl the other day (No prompting!) and waved to her, well, waved to her while waving to himself. lol Is he far enough along to start such an advanced program ? Is it advanced?

Oh my! Did I leave anything out?

My Gabey Baby

Here's a look back....

















Here is Gabe in the hospital about a few days old.
He was born 7 weeks early with breathing problems.
The IV and CPAP made me cry at first, but
you do get used to them being " a part of"
your child. I had waited 2 days before I got
to hold him.
Before that, I could only gently lay my hand on his back, due
to all the IVs, wires, and warming bed. I couldn't stop crying.
I waited 2 weeks until we could finally take him home.























Every month we took a picture of Gabe in this chair up
until he was 1 year old. We did the same with Boo.
This was a good way for me to see how they grew.
I had a hard time keeping up with the whole growth chart thing.

















This has to be one of my favorite pictures of Gabe and Boo
2 Halloweens ago.
Gabe is soooo chubby!!! I just want to give him a
squoosh tickle!

















I have about a million of "sleeping" pictures of both of my children.
They are my absolute favorite.




He looks like
such a little boy here.

Pandora's Box

I have always led my life with the belief that in order to truly move forward, it is important to understand where you have been. Where some people say "Leave it well enough alone", "The past is the past, it is not good to dwell", "Let bygones be bygones", I seem to repeat the same lessons in life over and over until I finally understand what I was supposed to learn. My past relationships with men is a prime example. But, considering where my lessons began, I have graduated with honors.

And so the box opens.....


Both my parents grew up in abusive households. My parents' parents also were dealt the same unlucky fate. Mostly at the hands of the women who ran the household (I believe from the depression that runs through my family like a brush fire) and the fathers were neglecting with unreachable expectations. This twisted "family tradition" continued onto my brother and I. My mother being the abuser and my father still caught in the toddler's world of "Everything is about me". We were left to fend for ourselves and eventually it was I who had to take the abuse from all three.

This box has been visited more recently, more often than I had ever wished. The secrets that years before I locked inside, now hold valuable information about my son. They hold insight into not only why my brother acted the way he did, but possibly, giving us a better understanding of Gabe. Although never truly diagnosed, my brother was surely on the spectrum. I am not by any means indicating that children who are on the spectrum grow up to be abusive. Definitely not my intention. Nor, am I lending to the belief that genetic depression in the family can raise the rate for Autism. I guess it's possible, but for some reason it rubs me the wrong way. Kind've like the thought of "If you have "defective" genes, you will have "defective" children." Aren't we all "defective genetically" in one way or another? My brother was an abused child on the spectrum. My heart breaks at the confusion he must have felt and what I went through at the hands of someone who lacked the ability to understand what he was doing was wrong. His lack of understanding did not necessarily derive from being Autistic, he was quite caring at times, but rather from the total disregard my family had for me and its members.I have not spoken to anyone from my side of the family since Gabe was born almost three years ago. I do not ever plan to initiate contact with them. My will states that they are never to have contact with my children.

I am always all over the place when I search through those memories. It's like the Bermuda Triangle, I seem to always get lost in them. I'm not sure why I had visited this in my blog. Maybe it was a way for me to put a part of "My history with ASD" out there. Perhaps, to put in words that I am NOT continuing the "tradition" with my family. That the buck stops here. That I am making a difference. That I am not my mother and Gabe is not my brother. We will be OK. It was hard to write that last line.... So I will write it again.
We will be OK.
I just remember not being OK for a long time. Here is Gabe now, almost the spitting image of my brother. It's now my turn.