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

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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?"
















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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.

Look Who's Talking...

Lately, Sundays in my family have been very looooong days. There just isn't much to do up here in the great white north when it is cold, rainy and gloomy. But, it doesn't compare to Seattle's 28 days of rain-OH MY GOD! However, it does leave SD (Super Daddy) and I in a conundrum. What do you do with the kids? Boo's question for the day is always "Where are we going today?" "Where are we going?" *sigh* Me, I just want to curl up on the couch with some Sesame and Seaweed rice chips, big glass of H20 and watch my Sex and the City DVDs. Oh, the life BEFORE children....how I miss it on days like these.

Recently, I have been really missing the spontaneity that comes with life without children. Love'em like nothing else in the world, but taxi driver, my little pony player, host of the tea party, train whistler momma needs a break. A BIG break. Oh, I remember the days of dancing with friends for hours at the club. The music was intoxicating, and so were the drinks. But, it was the feeling of freedom and self expression through my body that made me feel so alive. Meeting new people over a few cocktails, perhaps picking up a game at pool, casual flirting. The atmosphere is toxic in every sense and certainly the idea of it finding a place in my life right now is sadly funny. Oh, how I miss it.

Anyway, so obviously I did not spend last Sunday on the couch reminiscing the cliche"Glory Days." SD and I took the kids to the mall to play on the giant food, then to the Rain Forest Cafe http://www.rainforestcafe.com/. If you haven't been there-Go! If you do not have one near you- try to get to one when you travel. The menu prices are bit absurd, but the atmosphere is worth it. The whole dining area is made out to look and act like a Rain Forest. There are huge salt water aquariums, large animals that move and make sounds (not too animated like Chuck E Cheese) . Snakes hang from the ceiling, elephants are herded together in one area, gorillas are up higher in the "mist of the jungle". They have rain falling from the ceiling around the outskirts of the restaurant- very realistic, especially for the younger crowd. My kids love it. We eat there every few months or so. Mostly on those long Sundays.

So, the minute we get in line at the restaurant, Gabe has this burst of language. He starts pointing at and naming ALL the animals. "Monkey"...."Oooheeeoheee" then Gabe points to the next animal, and so on. His face lights up and he yells "I see.!..I see!" pointing to the elephants as we get seated. they do a mock rain storm by having the ceiling flash lightning, a crash of thunder and the lights flicker, and the animals roar. I turn to Gabe and say "It's going to rain!" "Rain!" he says with a huge smile. Wow. He is so AWARE of what is around him. It's as if he has figured out a part of the world . He is beginning to GET IT. GABE IS GETTING IT!!!

I wonder if The Rain Forest Cafe is Gabe's dance floor. An outlet for his expression of speech. For me there was always that one song that moved my body just so to its pulse and rhythm, like I could do and be anything. Perhaps, Gabe's is a cafe filled with exotic animals that roar with the thunder.

Do you have a Mommycard?

Brought to you buy

MOMMYCARD

It goes wherever you need it...


ABA Therapy- $ 27,000

Speech Therapy- $ 3,600

Reinforcers- $4,000

Mommy said with eye contact and a smile- Priceless

"Aaaaaaaaaaple"

Our weekly trip to the grocery store can be summed up in one word......."Yaaaaawn". But, this Saturday, I was bound and determined to make it stimulating and educational. SD took Boo and her purse of pennies to get her weekly "Great Job!" treat. She earns pennies (Yes, I said pennies! They still have a purpose in our currency for the age range of 2-4 year olds.) Anyway, she gets a penny for making her bed, using an adult spoon and fork ( she liked using Gabe's smaller silverware) , being "nice " to her brother and other things. She loves to buy about seven gummy worms, various colors. She then gets to weigh them at the U Scan and pay with her pile of pennies. SD and Boo then call us on the cell phone to rendezvous for a gummy worm exchange. We put our carts side by side to ensure eye contact from Gabe, and she graciously hands over one of her delicious worms. It took about 5 of these exchanges for Gabe to actually want to put the worm in his mouth, now he devours it. Then we part and start our shopping adventure.


As I headed down the aisle, I had Gabe point to various body parts, head, eyes, tummy, eyebrow etc. As I picked stuff off the shelf, I have him echo what I am putting in the cart with eye contact, hand it too him, then have him place it in the shopping basket. He seemed more interested in the whole experience of shopping this time. Go figure. Sometimes the most obvious educational opportunities are the hardest to see. So off we went, I was having a good time looking for new foods to try and engaging Gabe. Hallelujah! Up and down the aisles, I think to myself, how interesting and odd I look at times talking to my son.

"Gabe," shifting my head all around to get some eye contact.
"Gabe?" Ahhh.. caught it! He looks at me and smiles.
"Look," I point to the Super Sized box of cereal that is now pressed to my cheek and looming over my head.
"Look!"... "Cereal." I Wait for him to echo.
Nothing. I'm still poised with box up against my head in the middle of the grocery aisle.
"Say Cereal." My lips accentuate the pronunciation.
I hold the box next to my head in order to get Gabe to look at my face and see how my tongue and mouth form the word. I have held so many things to my cheek, I've found myself doing it with my NT daughter. She has responded with a strange, twisted smile that can be interpreted as "Mom has lost it."
"Sear-al! " His eyes light up.
"Et Sear-al!"
"Eat Cereal." I echo back.
I open the box, hand him a few morsels and we walk off to the next item.
Needless to say, it helps that it has never bothered me much to stick out in a crowd.

The further we get into our shopping the faster he echoes and the quicker we move from one item to the next. I keep having to send SD on mini missions throughout the store, because Gabe and I are taking much longer than usual. Towards the end of our trip, we get to the apples. "APPLES!" no prompt needed. Apple is one of Gabe's favorite words, that and BA-NANA. He then trys to lean over and pick an apple up! My first reaction is
Is he trying to touch food ?
Table food is our biggest and most unnerving battle with Gabe. Having it near his plate sends him screaming and pushing away from the table and touching it is practically unheard of.
So, I pick up the small, red apple and place it in his hand.
"Apple," I smile.
Look encouraging I say to myself.
"Apple!" he looks at me.
Then it happens.


Liiiiiiccck.

Lick..
Lick, Lick ,Lick.

Then......
Mouth opens and I can see teeth...


Bite


Oh well. No luck with the little bite. BUT, I will take the lick anyday!
After the moment ended and Gabe started hitting the apple on the cart, I looked around at all the people in the produce section who may have seen and say loudly,
"I guess we're going to have to buy that apple!"


"

What I have learned about the Big "A"

Autism Education

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(It is almost one year since Gabe's diagnosis of PDD-NOS.

This is what I have learned so far)

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1. I have learned that this is something I can not do on my own.

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2. People DO care and want to help.

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3. Insurance companies DO NOT

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4. There are too many "what ifs" and "maybees"

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5. Money really is the bottom line

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6. The internet helped diagnose our son with Autism, not our doctor

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7. The internet also found Gabe's therapy

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8. There really are not enough hours in the day

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9. Autism enabled me to let go of the feeling that my son just didn't "like" me.

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10. It made me think that if 1 out of 166 children are diagnosed with Autism, why wasn't it mentioned in ANY of my 5 reputable Baby Books. Even the Mayo Clinic guide to infancy through toddler had no mention of Autism.

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11. Is Autism a bad word? I found in some circumstances it can be.

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12. I think speech therapy is amazing. I am forever indebted to Dr. Karen.

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13. OT therapists have no clue how to get Gabe to eat.

(Thanks to Lisa S. for some good ideas to work with :o)

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14. Autism starts with the letter "A" like the word "Alone". I have felt this way around other people with NT kids.

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15. The big "A" gives you your highest highs and your lowest lows.

10 RANDOM THINGS ABOUT GABE

For Suzanne at Diverting Daniel
http://divertingdaniel.blogspot.com/

10 things about Gabe

1. Gabe would rather lick a lava rock than eat table food.

2. His real name is Gabriel, after the angel Gabriel. (AKA "Chubbers")

3. He loves to stick his blankie in his shirt and say "Tica Tica" (Tickle , Tickle- for us to tickle him where his blanket is)

4. I was very nauseated with Gabe the first few months of my pregnancy. I would lay on the cold ceramic kitchen floor and eat peanut butter and jelly sandwiches. Little did I know, that both my children have severe peanut allergies.

5.Gabe loves to sleep in 3 places, on a heating vent, right next to his bedroom door and upside down in his bed.

6. At the same place, on the same road, Gabe looks out the window and says "Tee!" every time. It took 3 months to figure out that someone had a big letter "G" on there house. All of Gabe's letters then were "Tee". Now he says "Da, da, da, da" about the same place and we have no idea why.

7. He loves to script the part in Nemo when they are initiating Nemo at the volcano and they are all chanting "Whohaha, Whohaha, Whohaha".

8. Gabe was born 7 weeks early and was taken before I could hold him to the NICU for breathing. Then they put me on bed rest due to something about my heart and I wasn't supposed to see my son for 3 days. I couldn't stop crying and some social worker put in my file that I was unstable without proper support from home.

9.Gabe has been in size 6 diapers since I can remember. He went from premie diapers to Toddler size 6 in 10 months. I swear!

10. He picked out his first dress to wear today. Sister's have the most amazing influence to my husband's chagrin.

"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.

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!

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?"

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.

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.

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?

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.

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

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.........................................