Monday, May 29, 2006

Gabe's Favorite Things This Memorial Weekend

Oprah has her list, This is Gabe's...


At a butterfly conservatory

Can you see the orange butterfly on the flower?

Gabe thought for a long time about whether or not he wanted to have a butterfly rest on his finger. The people there would paint one finger of each child with orange Gator-ade to attract them. We decided against putting something sticky on his finger. I wasn't sure if Gabe would like that feeling (He does not like the stickiness of bandaides.) When we almost got one to rest on his finger, he pulled away at the last minute. But, by the time we left, he was happy watching the butterflies with his finger pointing outward as a possible safe place to land.

One orange butterfly thought Gabe's head was much better than a finger.


SD started Gabe's experience at the aquarium by telling him about the cool sharks. He was so excited. So much so, that he briefly admired the other fish and kept walking through the octopus, turtles, rays and jellies. "See sharks!" he smiled. We eventually had to have a sucker break just so everyone could catch up and we wouldn't be leaving after only being there an hour. The sharks were at the very end. These sharks Gabe loved and we managed to get him to pet one. He really had a love/ hate relationship with them. I think they scared him, but he was also so drawn to them.

and finally....


SD showed Gabe how to hook the "noodle" up to the blower in the pool. "Fire! Fire!" he shouted. We said he looked like a firefighter with a hose. He loved watching the water squirt from it.

Sometimes too much...oops!

Thursday, May 25, 2006

Finding A Place To Grow

Today I went and observed the ECDD (Early Childhood Developmentally Delayed) classroom. We are seriously thinking of sending Gabe to our public school. His ABA school is still awesome, but does not give enough time for socialization in a "typical" school setting. His growth would expand even more in this program. It functions just like a regular preschool, but has the added bonus of addressing special needs students. It is also blended with the Head Start Program. I was concerned at first about the mix of children and the possibility of Gabe not being challenged enough or challenged too much. So, after meeting the teacher a month or so ago, I decided I would take a day to observe her class in progress.

This classroom was very welcoming and the children were perfect, perfect for Gabe. He would love it there! I tried imagining him playing in the kitchen area, or painting at the easel, or even spending time with headphones on at the music center. An entire half hour was spent exploring, mingling with others, creating! The activities seemed endless!

I have been in a preschool numerous times, but never with the perspective that I carried with me today. Never with the questions of ...
Will he be able to follow their routine?
How many transitions are there? How are they done? Orderly? Same everyday?

Do they have a Pecs picture schedule that the class can readily see and follow?
Will someone be there to guide him?
How different will it be than his school now?
Will they be able to "love" Gabe the way I do? Even on his off days?
Are the aids friendly?
Will they be able to look past the stereotypes that accompany an ASD diagnosis?
Will he be happy?
Will he be able to grow?

His previous Early On teacher stopped in and said hello. I have always liked her. She is the type that remembers all her students and is genuinely interested in how they are doing. I just wish the Early On Program offered more and was able to give an appropriate and detailed evaluation of their incoming students. But, they just can't. Gabe's evaluation in the classroom through that program was atrocious. In a HALF hour they diagnosed him Developmentally Impaired, when he was clearly on the spectrum. Imagine what would have happened if I had not sought out a separate evaluation by a team of specialists from a leading hospital. I reccomend ALWAYS getting more than one evaluation done for your child. You wouldn't buy a new car just cause the salesperson told you it was a great car, would you?

Anyway, good , good feelings about this new path for Gabe. ABA is not offered through this program, so we will be doing maybe an hour a day after school and adding some goals that we have in his ABA program into his IEP goals (cutting with scissors, etc.) I think that sounds like the best plan. It will be hard not to return in the fall. We both have grown so much in the last year with all his wonderful therapists. It is time for change. I think Gabe and I are ready.

Sunday, May 21, 2006

The Boy Next Door

Our neighbor's little boy stopped by today. Actually it was more of a hop, skip, jump over to our driveway where Gabe was using his large bubble wand and Boo was reliving a scene in Mary Poppins with her kite weaving back and forth screaming. "I'm flying a kite Mommy!"

Seth is about 2 1/2 years old and cute, cute, cute. This was his first visit, while mom and dad were getting the RV ready to go north next weekend. Gabe was so excited! He just stood there with a huge grin...and stood there......and stood there.....( "Houston....waiting for lift off")
"Gabe, say Hi Seth!"
"Hi Seth!" I love how he repeats with the same enthusiasm.
"Say, Lets Play!"
"Let's play," smiling and jumping in place Gabe is jacked.
I hand them both a bubble wand and they played for a whole half hour blowing bubbles and laughing...TOGETHER!!! Engaged, admiring each others skills of bubble making.
After the novelty wore off and both were looking to explore something else, Seth and Gabe stood next to each other on the driveway. Just standing. Thinking. Watching. Standing.
Gabe grabbed Seth's shirt, laughing, saying "Run!" "Run!"
He was really grabbing his shirt, not in an aggressive way, but in the "Let's Play" way. He can initiate play just fine I thought. It's finding the words, using language, to engage another person in what he wants to do. Huh.

Seth had to leave with mom to check on his little brother who was sleeping.
Gabe turned around and looked disappointed. Back to the bubbles he went.
Seeing his disappointment, I got him on his new bike, helmet on and practiced pedaling. Boo is such a great motivator in how she would ride right next to him honking her horn, riding circles around his bike. Gabe honked back and attempted to pedal. I think he gets it, just doesn't seem too motivated or the movement is a little unsettling. So, I push him and he honks his horn with a huge grin.

After a few laps, the bikes went back in the garage, helmets off. Boo went right to her kite and Gabe turned towards his bubbles. On the edge of our driveway there stood Seth.
"Seth!!!!" Gabe shouted, huge smile.
He ran up to him and gave him a hug.
Gabe made a new friend all on his own.

This post is dedicated to SD (Super Daddy) who I miss dearly and look forward to seeing again soon.

Saturday, May 20, 2006

Just being

When my husband read my last post he said, "Wow. That's a really sad one."
"Really? Sad? It wasn't meant to be. Enlightening, showing growth, maybe even a touch of hope. But sad? huh."

Sometimes, I think people reading parents blogs of ASD children make the assumption that we are all floundering to "save" our children. I suppose a picture of a crazed mom with sunken, dark eyes, twitching, holding up her child over the fire of experimental medicine, willing to sacrifice everything just to have the "perfect child," probably comes to mind on more than one occasion. On the contrary, I am more concerned with Gabe's speech than his ASD "characteristics"(Which I think are mostly him being Gabe), because I can be. I have that luxury. Gabe doesn't demand as much attention and time from me as the children seemed to in the video Autism Every Day. If there was a fire pit for perfection, hell, throw me in! (Just kidding, please don't quote and throw it back in my direction. But, if you asked me if I would like to get rid of my anxiety, depression and gastro intestinal problems..I would respond with ...Ah yah!)

So, I went back and read my post and still could not see how it is sad. I think the woman's quote could be taken as portraying some sadness, But she also seemed to have reached an important place in regards to her son. It is more depressing, I think, to remain in a state of hope for something, when that kind of hope will not happen. That's when you create a new hope, a new outlook, a new beginning for other dreams and aspirations. Just because ASD is part of the equation, doesn't mean that everything should come to an abrupt stop. That's where I am with Gabe. We still have high hopes and dreams, not because of a new treatment that will "cure" him, but because he is our son and we celebrate his greatness.

I just wanted to clear that up.

And maybe some of you out there can help me understand this. Autism Hub has a few of our parents sights on their list. I went there today and could not believe the bashing that most did against Parents of ASD children. Why would you want to be part of that hub? Just curious. I also hope that parents of newly diagnosed children do not find that hub, at least until they grow some very thick skin. Because, according to most of them, WE are the enemy. I didn't even know we were at war.

Thursday, May 18, 2006

Stages of ASD

There are stages to grief and I believe there are stages that parents go through with children that have been diagnosed with ASD. Some hit all the stages, others may slip past some. Me, I feel like I hit them all. Now I feel I am heading onto the next stage, the stage of "This is it". I watched and, well, cried through the short movie Autism Every day. What struck me is the woman in the park that said,"You first get diagnosed and you say to yourself , I'm going to do a year of really hard work and he's going to be fine. He's going to be better. And the year goes by. Then you say ,Ok, maybe two years and then maybe three years. Then you realize, Ok, so basically it's life long." It is life long. I knew that before, I heard, read and realized it was. But, now I got it.
I got it.
I just don't know what to do with it.
This new stage I have embarked on.
What do I do now.

Tuesday, May 16, 2006

Three Is The Magic Number

Do you remember that song from the Saturday morning cartoons? School House Rock? Am I dating myself too much?
Part of it goes like this...

Three is a magic number,
Yes it is, it's a magic number.
Somewhere in the ancient, mystic trinity
You get three as a magic number.
The past and the present and the future.

Faith and Hope and Charity,
The heart and the brain and the body
Give you three as a magic number.
It takes three legs to make a tri-pod

Or to make a table stand.
It takes three wheels to make a ve-hicle
Called a tricycle.
Every triangle has three corners,

Every triangle has three sides,
No more, no less.
You don't have to guess.
When it's three you can see
It's a magic number.
A man and a woman had a little baby,

Yes, they did.
They had three in the family,
And that's a magic number.
Music & Lyrics:
George R. Newall
Performed by:
Blossom Dearie
Phil Kimmelman and Associates

I'm beginning to believe that three maybe the magic number for Gabe. The age where things really start to click with him. Where ABA Therapy stops, Gabe is starting to begin.

Learning about Gabe

- After relinquishing a train from Gabe's tight grip, I told him if he can not share at the train table, then we will go home.
"Do you want to go home?" I said.
"No."Gabe replied.
"Then you need to get off the floor (He tantrums on the ground) and I will help you find another train to play with."
He got up, got another train, smiled and continued to play.
We had our first conversation using reasoning.

- "Eat Yellow Tings!" I hear from the backseat on the way to school. I don't have Tings, but I have sausage I can use from his lunch box.
A minute later, a bowl with pieces of sausage mixed with potato flyer chips is being eaten independently in the backseat! Independently! 3 bowls full! I think the eating program is really working. He may actually like sausage.

-A heard a faint mumble of something when closing the main door to his school this morning. Gabe drops to the ground unwilling to move. Why is he tantruming now? A few minutes later, we are able to continue our day. Coat off, bag in cubby, playing in the gym before circle time. Not until later did I realize the mumble was him saying "beads". He wanted to play with the bead box in the lobby. What it must be like to not be able to verbally express your needs. "Can I play with the beads?" Boo would've said at his age. Gabe quietly said beads and fell to the ground. Communication is a BIG area of concern with Gabe. I just hadn't thought about the obstacles it is creating for him.

- He desperately wants to play, but only on his terms and not really.
At the train table today, Gabe had a definite idea about what was OK and what wasn't. He could put his train anywhere on the track. I was not to put my train anywhere. If I did, he shook his head and repeatedly said, "No" until the offending train was removed. I would say, "My Turn" and put it back on the track. This seemed to ease the tension for a few moments, but then was replaced with no again. I guess there is a limit to how long Gabe thinks your turn should be. I thought, maybe it's age appropriate behavior, but watching him, he looked so ill at ease with what I was doing. Gabe has been described as having some rigid behavior. The first time I heard that word in relation to my son, my stomach tighten and I almost cried. Now, I am beginning to see what they meant.

-Gabe got a few looks today when he spoke"Gabey Language" at the library. There is a big canoe that has a lot of stuffed animals in it, overflowing at times. Gabe and Boo love to play there. This time other kids, one Gabe's age, another older, joined them in the canoe. He was so excited! So much so, that he began to speak "Gabey". It sounds like baby talk to the NT world, but those in ASD land know it is probably scripting that lacked clarity with a few intermittent giggles. The younger one was too busy grabbing animals and claiming them as hers, the older girl got "that look" when hearing Gabe. Did she know? Could she tell he was different? Did the mom's notice? What's funny is that I didn't care too much what the moms thought, but the look from the little girl made me almost fall out of my chair. I knew from watching Gabe, that helping him initiate play with others will be our number one priority now.

Monday, May 15, 2006

Today's Lecture.....

Is entitled..."Is she trying to kill me!!!"
NO! Really. Is she?

As some of you may know from this post, I have an unsolicited lecture series just for me , "Oh Boy!", that occurs every Monday while Gabe is at speech. I went in prepared this time with great advice, a big book and my I-Pod, but wouldn't you know it, I left my "balls" at home. It so happens that she honestly believes that she is helping me. The other woman who is in the waiting room, who also has children with ASD, believes it is her God given duty to inform me of what she thinks it is best for Gabe.

I started off strong, I did! Large book covering most of my face and I-Pod in lap. No eye contact and I ignored her when comments were made, focusing only on Gabe before he went in. But, wouldn't you know it, the second Gabe left and the room went quite, I threw the book up in the air, almost resting it on my eyes, I made the mistake of leaving the I-Pod in my lap. "PUT THEM ON!!!!" The part of me that remembered last weeks fiasco screamed. No, no, I thought. This should work fine, she can't even see me. I felt like I was back in grade school and making the fortress of books around me, so I could disappear in class. I probably shouldn't read the top of the page though, because she may think I was looking her way. Should I only read the middle? What fun is that? Oh God, Help me! Don't look, Don't look, don't look! my gut whispered.

She starts to talk. There is no one around, but me to receive the mindless info. Ok....grunt, just like SD (Super Daddy) does. You're acknowledging, but not really. A clear sign of saying "Not Interested". I grunt, but she is still talking. The grunt went unnoticed.
Is she trying to sell me something????!!!!! She whips out the Arbonne catalogue and is trying to sell me something. What the...????? All ASD parents are poor, at least the ones I know, or are struggling now with all the therapies and doctor bills.
I stop, look up and say, "Are you trying to sell me something?"I was flabbergasted.
In mid sentence I stop her sales pitch and say,"We are struggling as it is, I can't justify buying expensive cosmetics. Can you?"
This lady is always throwing out how poor they are and how they are struggling, yet she is buying Arbonne cosmetics? Huh...
With a huff she goes back to what she was doing.

Class dismissed!!!!......Hoooooooray!!! I Did it!!! Way to go!!!

Oh, but the lecture has not even begun!

Welcome to "You should do this charity event and I will tell you all about it in the next half hour." Ready? Oh who cares! I'm going to tell you anyway!"

My will to please and be liked had now been pushed aside by my need to breathe and desire to strangle her. So, being the mature person I am (just not in this case), I chose the less traveled path, I argued with her about everything. I let it all hang out. What I thought about this and that. I told her I wasn't interested, that what she was telling me wouldn't work tax wise. Who knew I knew anything about charities?
On and on it went until she had had it with me and my mouth and said, "Well, I have been doing this longer than you!"
That's when I laughed to myself and thought, "Yes, you probably have been a pushy, thoughtless, dictator in most of your so called "conversations" with people. You probably push yourself on everyone you come in contact with that gives you an inch where you then take a mile."
I took a deep breath, realized that it has nothing to do with me and remembered they had a bench outside the waiting room that I will use next time. Gabe then came out with a sucker and a smile. He perfectly blocked her out of my world.

Sunday, May 14, 2006

Being a mom means....

Presents on Mother's Day! Hooooooooray!!!!!

All these glorious books! Easy summer reads that I cherish when I have a moment to myself. The book second to the far left is the one that Boo picked out for me, because it was pink :o) I also have a new book on Autism that focuses on DIR/Floortime by Dr. Stanley Greenspan. It will be read along with the four other books on Autism that I currently have at my bedside also. I'm looking towards Gabe deviating away from ABA a little and exploring the idea of building his language and social interactions with people. He has expanded his area of interest now to successfully include other people spontaneously. He really wants to play and talk with his peers, but after the initial "Hi", he seems to fumble around what happens next (I can relate). He normally just says "Hi" again, then tries to initiate something by "petting" them or tickling them. It's so wonderful! We just want to help him get beyond the greeting. The book is called Engaging Autism, is on the far left and has a copyright of 2006 (!!!)

I am always aware of the copyright when using a book about Autism as a reliable resource. I learned that the hard way when I checked out books from the library when Gabe was first diagnosed with copyrights from the 60's,70's and 80's. I was in tears and thought I would have to institutionalize Gabe after reading their gloom and doom forecast for children with ASD. Never again. The autobiographies are still good, but they can be pretty scary for a new parent to ASD ( like Nobody Nowhere by Donna Williams). So, there you have schpiel about copyrights.

Other fabulous gifts I received...

Gabe decorated a very cool cookie monster card with his "Pollock" like strokes with his marker.

Gabe's Cookie Monster Card

Boo decorated the pot at school and planted
this beautiful flower for me....

and this, Boo's on the left
and I'm wearing a dress:o)....

Happy Mother's Day to Everyone!!!!

Thursday, May 11, 2006

This Week's Church Sign

Every Monday and Wednesday I pass by the same church on the way to Gabe's speech therapy. Today I smiled when I read their Sign...

Enjoy This Day Compliments of God

Everyday I thank God for the following things:

-A safe place to call home, free from harm and danger
-That we do not go hungry
-I am part of a family that loves each other unconditionally
-Summer breezes
-Good books
-Health Insurance
-ABA Therapy
-The wonderful people at Gabe's school
-The wonderful people at Boo's school that are always looking out for peanuts
-My husband, who's my best friend and the person who let me see outside of the dysfunction that was my family
-Being able to stay at home with my children
-Holding tight to my sense of humor even on the most challenging days
-Newsweek Magazine for putting Autism in my face where I needed to see it over a year ago.

Thanks God for a truly beautiful day today.

Monday, May 08, 2006

Could I be considered a conservative in the Autism world?

I wonder that sometimes. It's funny to put myself and the word conservative even on the same page. An oxymoron. I get a silly picture of President Bush and I running through a field of daisies together laughing about oil prices, as dollar bills escape out of our pockets and drift slowly through the spring air.

That word also conjures up thoughts of Martha Stewart in her crisp linen shirts, stuffing a free range turkey at Thanksgiving, government and religion holding hands, and women being put "back in their place". So, how is it that I am when it comes to Autism?

Gabe's treatment has always been based on fact. Research that has been proven to be accurate. I love data in conjunction with ABA. Sounds weird, I know, but you could not get a clearer measure of progress. My husband agrees with this too. But, the chemical engineer in him also thinks that the data can be skewed by subjective evaluation. When you are evaluating outcomes that can be measured only subjectively, ABA Data is as accurate as you can get, in my opinion.

So, how does this all come together? Well, each Monday I look forward to my treasured half hour in the waiting room when Gabe goes to speech. My time to read. I sometimes browse through Oprah's "O", People or Budget Travel magazines. My time to escape into another world that ironically has little to do with Autism. Today, however,I chose to bring my new, almost finished book, Daniel Isn't Talking by Marti Leimback. A book about Autism that uses fictional characters created by someone who has an Autistic son. (Sometimes I just can not leave the world of Autism .) It has drama, a love story and a character that beats the odds. A great summer book. At least that's what I thought.

Another woman, who waits in the room with me, I found, straddles both sides of the fence with ABA and biomedical approaches with her child. She asked me what I was reading. When I told her, she gave me a "look", then said "I don't read books like that. Mine are mostly resource, not fictional."
What is that supposed to mean? I could feel my eyes narrowing. Not only was she taking up my time to myself, but I believe she just insulted me.
Here's where it started. I should've stopped the conversation the minute it started, but felt like I would've been acting rude. Putting my book aside, she goes on and on, for the entire half hour lecturing me about biomedical treatments as if I needed her help. I must have had a look of desperation or one of being uneducated, not sure, because she thought I needed to be told about the needs that I have clearly overlooked with my son.

What was happening? I just wanted to read my book.

It was as if ABA was not acceptable on it's own. That's what gets me. I wanted to shout "IT"S A SPECTRUM!!!!" A spectrum with various degrees and means to treat. She left no room to get a word in edge wise. I was on the front lines with someone I didn't really know being lambasted about something I am not going to do with my son.

Now, I know many people that are treating biomedically, some are good friends, but my God, they are able to stand by their choices without shoving it down people's throats. I think it put me over the edge a bit, because it is as if we have the same conversation each Monday. It's one of those one sided conversations, I listen and she talks and talks. Normally, I don't mind to let a person who needs to vent, vent their thoughts to me. It's kind've like completing the circle for me, I talk my husband's ear off when he comes home and I in return become a good listener to someone else. A wonderful complete circle. The circle with this woman never makes a turn towards me, no give and take and lots of "Here,this is what you should be doing." Kind've a lecture series about what she thinks is best. I want to be supportive, but this week,

Any ideas?

Thursday, May 04, 2006

Happy Birthday Gabe

To my wonderful little boy,

Can I just say how awesome you are, how you absolutely amaze me, how incredibly handsome and spectacular your smile is, how much I love you? Every year I search for the perfect words to convey the beauty that you bring to the world, to our family and I always feel as if I come up short, just missing with my words the intensity and deep love that I have for you.

This past year, I have been so thankful that we began heading down the right path together, hand in hand, you and me. With the help of some wonderful people, I slowly started to understand your world. Each day you shared with me another little piece of the person you are, some I understood (like your love for holding favorite toys), others become an Aha! for later (Sleeping on the heating vent in your room), while others stay a quiet secret, private giggles I hear from your car seat (Some echoics that are mostly slurred). All amazing aspects of the unique person you are, each of us a specially wrapped gift waiting to reveal the surprise that is our true selves within.

This year you achieved the following spectacular things; learning your alphabet (upper and lower case) and their sounds all on your own, counting to 20 (Minus 14-16), brushing your teeth, saying hi to people unprompted, giving hugs and kisses, playing with Siena, PLAYING!!!!! with toys and people, SPEAKING!!!!!! sometimes 3 word phrases, riding a tricylce, singing songs (A lot of Playhouse Disney Tunes and Chicka Chicka Boom Boom), Eating Table Food!!!!, Food allergies are under control and you look and feel better. Gabe you bloomed this year. I think you grew a whole two years in one.

I just want to give you a big squeeeeeze!!! I would hold you all day if I could, sneaking in kisses and zerberts when I could. Three years old you are. Wow. It seems so young, yet so old at the same time. Having left your baby years behind a few years ago, now we are waving goodbye to the toddler you once were and welcoming our "Big" Boy!

I remember asking God when you were born to let you be a baby just a little longer than Boo was, to let me spend endless hours admiring your pursed lips and sleepy eyes. Now, I look forward to getting more glimpses of your developing personality, laughing when we hide under the blanket, reading stories in bed and blowing out more candles together.

Happy Birthday Gabe. You make my world so beautiful. Thank you.