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.