Hypotonia

When Gabe was first diagnosed at 20 months, I immediately had him evaluated for OT, PT and speech. Speech began at square one. She started with trying to get Gabe to say anything. The speech therapist had not only the longest road, but the most rewarding. She saw first hand his amazing growth over the past two years in language. The Occupational therapist suggested we work on his eating, holding utensils and expanding what he would eat. Physical therapy revolved around Gabe's new diagnosis of Hypotonia. Hypotonia? I thought after reading online and seeing pictures of limp babies, I just didn't see it. Gabe is strong with a capital "S". The therapist agreed and added that it was only a slight affliction. I then wondered what that meant? He is kind've limp? I still wasn't seeing it, but continued therapy anyway. We stopped after a month or two, because he was, still is, right on mark for what he should be doing developmentally motor/physically. This "Hypotonia" didn't seem to be affecting him, that we could see, like his speech and eating were. So, we focused instead on those two things. Some of you know how intense his eating program was at CARE (Children with Autism Reaching Excellence) and Gabe goes twice a week to a private speech therapist.

So, week after week, Gabe and his physical therapist worked on his "core strength", building and adding tone to his middle. We refer to that area as "The Chubs". Is he overly flabby? No. He looks like a boy who is turning four and still has a little squish in the middle. He does have my genes. Boo is long and lean like SD was growing up. Gabe is not overweight or inactive.















What struck me, almost two years later, was how Gabe never got the hang of some simple body movements that babies do naturally.
Let me explain, because I really wonder if anyone else sees this in their children, Gabe as a baby never gripped my hip with his legs when I carried him. (Boo was like a monkey) I had to fully support Gabe's body (You can see it in the picture above). If I were to let go of him, which I would never do, but if I did, he would fall to the floor. He would not even attempt to hang on. Another example, is if you were to help him out of the car he would not jump to assist you or hang on to your arm. I would be lifting his whole body. Same with putting him in. Gabe would'nt lean in and reach for his car seat, balancing his weight,while I helped him slide into his seat. I had to lift and place him there, unassisted for a long time. My back hurt every night. Now he walks in and sits in his seat all by himself. Thank God!

I thought about this a lot today while I watched him at gymnastics. They have a mini bar that Gabe's class practices holding themselves up on (Arms straight, body balanced on bar). Gabe does pretty good with that most of the time, it is when she bends their body to flip around, that he goes limp. Putting all his weight on her. It's as if he doesn't know how, to either assist with movement, or he is missing something else. Is that the Hypotonia? I noticed it again when he got to go down the slide into the foam pit at the end. When his teacher tried helping him out of the pit, Gabe went limp. I could see the strain in her face. She said, "Gabe's a big boy!"

He is tall and has a strong build. I have heard "solid" when referring to Gabe's stature. But, I wonder how much is Gabe and how much is it being limp? I've been trying to plan ways to work on it, as if it was a skill to learn, but wonder how can I make him grip me? Maybe he just doesn't know that is what he is supposed to do? Why should he help, if someone else will do all the work?

(Gabe at 9 months old. He has lost most of the baby chubs, but still has a little squoosh around the middle)

Hello?

I have a feeling that I have somehow fell off the Autism Blogger sphere. The comments have dwindled to a very (cherished) few. Is anyone out there? Did the switch from the old Blogger to the new leave me stranded out in blog land?

SD said my last blog was depressing. He wasn't sure he would've commented either. Although I did get a lot of welcomed hugs from SD, with a great set of ears that listen to me babble on and on occasionally. I have to admit, it was a bummer one. I just can't write a lot of "Chicken Soup for the Soul" like entries. Which is funny, because I like reading those the most on other people's blogs. It's hard to read the posts where people are struggling, because I live far away from each of you and I just want to give a hug with a reassuring smile. Sometimes comments and email just do not feel like enough. Then some days, it does the job perfectly.

















Do I just have people that prefer to read, rather than comment? I have also spent a lot of time reading lately and leaving the comments for another time. Blogger for awhile wouldn't let me comment. It's a long process for me to comment now with the new log in.

So, I just was wondering...
If you're just a reader, browser, fell upon my blog by shear coincidence or just wondered what Gabe was like,

Welcome!
Please feel free to just say Hi

Thanks.

Maintenance after 30,000 miles

So, my birthday is coming up fast, just around the bend and with it, I feel like I am loosing my mind. The two being totally unrelated, I think.

I'm anxious, irritable, elated, joyous, complacent, saddened,overwhelmed , energized and lost, but found all at the same time. Did I mention that I am exhausted?

I know there is something wrong, but am just too stubborn to approach the medical community with the same gumption that I use with Gabe. I was diagnosed with borderline hypothyroidism when I was pregnant with Gabe. They prescribed the appropriate medication and off I went. At every checkup, I was inundated with questions about how I felt. Each month, as they massaged my neck looking for a goiter, I always responded with, "I feel pregnant." Because outside of all the stuff that goes with being pregnant having hypothyroidism just adds some pepper to the already salty soup.

Early symptoms:
Weakness
Fatigue
Cold intolerance
Constipation
Weight gain (unintentional)
Depression
Joint or muscle pain
Thin, brittle fingernails
Thin and brittle hair
Paleness

Some of those symptoms fit my pregnancy profile, except the hair and nails. I have always had thick hair and nails. But, I have terribly dry skin and hair.

They never felt a goiter and I was taken off the medication for hypothyroidism soon after Gabe was born. Do I still have hypothyroidism? Could it be depression? Anxiety issues? I just feel a little off. I'll be 35 years old soon. Did someone throw me on the menapause wagon a little too early? Early dementia? I'm at a loss as to where to start with the medical community. I don't even have a doctor. When I find one, they either disappear from "the group" (that should be a clear sign of something) or they leave to continue their profession elsewhere. So, I have specialists scattered everywhere, but no one that knows me, my medical history or needs.

I couldn't even get an appointment today (Hello strep throat) because I had not seen a doctor within 'the group" within the last six months. I was not a "current" patient, so they could not squeeze me into their already booked time slots. I do not exist. I could not even get accepted by a group of people I would pay to see me. This left me with a whole new list of feelings to deal with today along with my burning throat, exhausted body, a killer headache and a sad Boo, because I was too sick to play Fairytopia with her.

I always wondered why it is that someone doesn't hand you a maintence schedule at the doctors office? I could really use a clingy that reminds me that if I haven't had sex, slept well, or had skin that peeled and cracked no matter what, that in three months I need to see someone about it. I need a list that states specifically what I need to have done every so many "miles". I need it to cater specifically to me. Does the fact that my father had pallaps mean I should have a colonoscopy earlier? I need a list! I wanna know. Does the fact that my mom smoked consistency around me for 18 years and then I coninued for 9 years mean I should be screened for lung cancer?

As I get older, I find that I am more drawn to other people's health issues. I want to know what that test was like and how exactly does Chemo work? I want to be prepared. Is 35 the year you start planning for your health for tomorrow?

Gabe's New Phrase Besides Me Too!

What's on my Ipod? Obviously very little that Gabe wanted to listen too. Because, according to Gabe, when I asked him if he wanted to listen to The Goo Goo Dolls' song Sympathy he replied with,"I don't think so."

Pink!? Dixie Chicks? Christina Aguilera? Maroon 5? Black Eyed Peas?



Was that an I don't think so?
I said, "Oh really?"
"Highway song. Listen to highway song!" Gabe cheered.
Gabe has a few songs that he is really into. They are the following...

Life is a Highway Rascal Flatts


Real Gone Cheryl Crow


Time to Start Blue Man Group


Shine Robots soundtrack


Black Horse and the Cherry Tree KT Tunstall


Irresistible Beyonce (He says to the right, to the right instead of to the left)

He loves to sing. In fact, Gabe knows much more than he lets on. I remember about 6 months ago we started expecting Gabe to participate in grace. First, just sitting quietly, then putting his hands together to pray, and then saying Amen. It took him about a month to catch on.

One evening, we made Gabe's favorite, steak and french fries with a cold cup of milk. We all sat down, hands together and began in prayer....Bless us O'Lord....enthusiastically, Gabe continued...and we stopped. We stopped saying grace, because Gabe was not only saying Grace with us, but could recite our prayer in its entirety, word for word, all the way up until the Amen.
"Amen!" he smiled.


Amazed, I asked Gabe, "What are you thankful for?"


He laughed and proudly stated, "French Fries!"





Amen.

It's All About Chocolate and Karma

February/March marks the time of year for placing your child's name on several preschool waiting lists...for next year and the possibility for an IEP meeting with our district. If you remember, Gabe can not attend school until he has been

"re-evaluated" (I am laughing, snarkly, at how our district evaluated Gabe) We are tossing around a few ideas.

This has raised an interesting question for SD and I.....
"Do we have to have an IEP?"
Can he attend preschool without one?
It's an interesting question. Academically, Gabe is right on par with his peers, I work very closely with a Behavioral Therapist (ABA) for all his goals, his speech is coming along while he receives private speech, and the school district seems reluctant to provide any help with behavioral issues....So....."What does Gabe need an IEP for?"

I was planning on sending Gabe to the same preschool that Boo went to in our public school and I would be a room mom or shadow him for the first week or two. If his behavior became an issue, then we would look to preschools that cater to children that need extra help in certain areas, like Gabe's preschool now. Unfortunately, Gabe's current preschool only provides preschool for two half days a week. Next school year, Gabe will need to be in preschool for 5, 1/2 days. He is just ready. He's ready right now, but it's too late in the year. I also want to continue his involvement in extra curricular activities like swimming, gymnastics, soccer, storytime and such.

SD's thoughts are this....I should call the Special Education Director and let him hear some of our thoughts, this way the preschool teachers would not feel like they were being deceived if we just put Gabe in their class. I had asked during our last IEP if Gabe could attend the regular preschool with an aide and I was told no. But, were they saying no to the aide or the preschool part? I want to believe it was the aide, because the people in the room during our IEP had never even met Gabe and the only info they have about him is from when they evaluated Gabe at 18 months old. (!)

If it doesn't pan out, we have a few other ideas up our sleeve outside of our district. We just really wanted to Gabe to have friends that live nearby and not an hour away like he does now from his current preschool.

I just want what is best for Gabe.
I just want a preschool teacher to fall in love with all that is wonderful about him.

I want someone that will not stereotype or limit him based on his diagnosis.

I want him to keep soaring and I need someone who will help him with his wings from time to time when we are not there.

It's a big list, but I am going to go out there with the belief that that person is out there.

I am going to extend good Karma, good vibes and chocolate. Chocolate.....just because.

Me

Ok. This will be a little off subject.
Well, kind've.
It's what the other part of this blog is supposed to be about.... me.
Who's that you may ask? Who's me? I know a lot of other mom's have asked that same question. Who is she talking about? Who's this me person anyway? I don't have time to take care of yet another person in my life, let alone someone called... Me. Who invited me anyway? Does me do laundry? Cause if me does, well then, I'm allllllllll ears.

This is me

















I'm the one on the far right...that's me.


Me consists of haircuts from Borics, Target hair dye and Old Navy and Gap are what suit me. On really fancy days... my nails are painted a flashy, clear color, all for me.
In the days when me was more I, as in Borics was by Kroger and I never looked twice. I went to a fancy salon and spent 12x more on a haircut and color. I still wore Gap and Old Navy, I just had more clothes. I sometimes had nails with color *gasp*.

I doesn't have a place in my life with me. I like me. I is just one letter. Personally, I wants to be in a pair with M and E. I was eventually given a chance in Moi.


Me was great, that's until, there was a very fancy wedding coming up.
That's when me, wanted to be I again.

When me wants to look like this.....

Wearing these...

Maybe even...

Me is so excited for I!

The New Boss

After leaving Gabe's previous preschool, CARE (Children With Autism Reaching Excellence), I found myself thrown full force into the stay at home mom life. And, for those of you that don't know, this life does not revolve around delicious ice cream filled chocolates, over stuffed couches, and a large screen TV playing Sex and the City reruns. There is a whole other time clock that is monitored closely by a new boss, the child that you entertain every second of the day. It can be exhausting and I might add with some guilt, a little mind numbing.

Gabe has a pretty good social schedule, and we have figured out what works well (it does cater much more to him) in terms of needed space and downtime, although it never seems long enough for me to recharge. It's the isolation and monotony that is beginning to take its toll. I don't think I complete even one thought or sentence a day. I am either interrupted or multitasking to the point where the joy of the conversation itself becomes a task I just want to finish. SD is the only adult I have a slight chance to talk to about something other than my child or any children for that matter. Problem is, my cherished time with my husband is challenged by my equally needy daughter, Boo. Boo desires the same companionship the minute she comes home from school. SD (Super Daddy) is a popular person in our home.

My tutoring with Gabe and ABA is going OK at home, better than I thought, mostly with continuity and amount of time. His intraverbal programs were tricky in the beginning, because they require so much language. (Go figure) We do have a great tutor that comes one day on the weekend to work for a few hours. She is incredible with helping fix what I may have done incorrectly with Gabe's programs. The maintenance for ABA is a lot of work. He has mastered a very large number of programs, some with exemplars that reach into the 40's. The intraverbals with extensions are a challenge. Gabe does about 1-2 hours a day of ABA provided by me. When I say that, it includes trials, play and motor. Some structured, some not. We also work on other target areas incidentally throughout the day like generalization, dressing, eating and behavior. Some days, I just want to throw his ABA book out the window, other days, it is like the Holy Bible. It definitely requires dedication. I do it even when I would rather jump off a cliff. Gabe and I always end up having fun, because we are really just playing with a purpose. It's that I have to do it that causes the tension. There are also days when Gabe would rather do anything but tell you what has a mane or what is salty.

Gabe has also been testing boundaries...hourly. Turning the TV off brings out a side of Gabe that is the most challenging. I have tried everything, but obviously the no TV track. It's just not feasible. Why you ask? Because I am not willing to let it go. It's down to 2 1/2 hours a day, quite a feat for us, but still seems high to me. He is refusing to leave certain activities and places (Gymnastics, toy department at the store, Meijers)transitioning as we refer to it, and picking up Gabe is getting to be almost impossible at a solid 48 lbs. 43 inches. We have consulted someone and am working on various strategies to use with Gabe. I am tense and wonder when my hair is going to fall out. Did I mention it is every hour? For most transitions?

I know this is all me. It has nothing to do with Autism, bad hair days, or the impending emptiness of our bank account. It has to do with just hating winter, being trapped inside, not putting enough effort into maintaining friendships or extending myself beyond my "acceptable" boundaries. I have a period every winter when I just want to cry from frustration, feeling trapped, and wondering why in the hell do I still live in Michigan. It's only half way into February, green grass and sunshine do not even start to show until late May.

So, I vented. I'm a little lonely, lacking in coherent thought and without any ice cream that I can eat without feeling guilty that it is the middle of the day.

Born On A Blue Day

After seeing the interview with Daniel Tammet on Good Morning America, I knew this would be the next book about Autism that I would read. Born On A Blue Day is best quoted by Temple Grandin, "It was fascinating to read how the mind of a mathematical savant is both similar to and different from my visual brain. Daniel thinks in patterns, colors and shapes, and relationships between numbers, instead of in photo -realistic images. This book is a must- read for anybody who is interested in how the mind works."

I found that this story, like Temple Grandin's, brings hope and understanding. For me, it shed even more light on my brother. My brother, although not formally diagnosed, has Autistic Spectrum Disorder. It became so clear after Gabe's diagnosis that I almost called him after years of not speaking to one another to let him know. I ended up never making that call.

Was my brother a savant? Now, I'm not sure. I never thought so before. But, after reading Daniel's book, I wonder. I wonder, because my brother loved numbers passionately like Daniel. His physical world was very chaotic and unstructured, but his mental creations with his games and papers of statistics were very organized. He had numerous sheets of papers listing Kasey Kasem's top 40 countdown for every week, with mathematical equations that provided probabilities for the following week's song's placements.

"Who's going to come on top Kristin?" he would glance up at me.
"I have no idea." I stated and slowly walked away.
"Come on! Take a guess! Wanna bet?" my brother's eyes glistened.
I didn't, because it isn't fun when you always loose.

My brother had a huge gambling problem when I was in college. It wasn't that he lost a lot, he was very good. He loved the art of probability. What hurt him was his belief that people meant what they said and said what they meant. People bet, but never paid up. Sometimes my brother lost, and those same people made sure to collect.

Now, Daniel Tammet had a very supportive family. He was loved and accepted for exactly who he was. Both his parents encouraged his passions, no matter how different they seemed. My brother came from a very different background of judgment, harsh criticism and wavering acceptance. The similarities I saw between the two were startling to me, even considering those differences. Daniel had a love for numbers, mostly prime, my brother loved all numbers the same, because they were a constant, easy to understand. They represented stability to my brother. They were safe in a world that wasn't.

Language was a love of Daniel's. In fact, in his book, he makes some languages sound so beautiful, so easy to understand. I can see how he affected his students the way that he did when he taught. My brother's wish was to travel to every continent. He also had a list of every city he wanted to go to. If you asked him, he could tell you the city of every country in the world. It was customary for him too learn the language before traveling to a country. The last I heard, he traveled to Romania, fluently speaking Romanian.

This all never seemed all that remarkable to me. I just always admired how brilliant my brother was. I also felt so frustrated when he "just didn't get" life's innuendoes. I remember saying to him, "How can you be so smart,but lack so much common sense?" Now it makes sense. It all makes sense. I bet my brother would love this book, all the equations and mathematical reasoning. To him, a math concept is to me,children's artwork, something to celebrate. I'm hoping he picks up Born On A Blue Day soon and it can shed some needed light for him too.

**

**

My brother and I on my parents sailboat in 1975. I was Gabe's age (3 years old) my brother was seven. You can even see in the picture how different we were. He is shadowed in the background and I am trying so hard just to be seen.

Your child is a wonderful piece of art

Gabe's Rainbow Fish inspired by Marcus Pfister's illustrations.

I think it's incredible. I think all children's artwork is incredible. My own children's art.....well, I'm over the moon when they create. It is pasted all over our house, framed, taped, signed, unsigned, abstract, early symbols, picture's that tell a story. They amaze me. I have framed over our bed Boo's very first scibbles. Someone once said to me, "Wow! Now, that's a fancy frame for that picture." But, you see, it's so right for it, because it reminds me everyday of how much she has grown, everyone's, including my own, need to create and share ourselves with others, how wonderfully color brightens and enriches our world, and finally, that nothing is obsolete, stagnent, unchanging.....(in the metaphorical sense). My chemists husband, SD, would disagree with the last statement, so I had to end in "the disclaimer".

That is a hard lesson to hold onto as a parent sometimes.
"Will Johnny ever tie his shoes?"
"How come my child doesn't know their alphabet?"
"Olivia just isn't very coordinated."
Sometimes, without intention, we frame our own children. We place the borders around their world, pick a colored mat, "Patty always has liked pink!" and we close it and stare at what we have created. On occasion, or maybe even more than we like, we forget that our children are always changing. Some slower than others, many at warp speed. Children may have a clear path, while other's are all over the place. I am one of those parents that need to constantly change the artwork, leave craft stuff sprawled all over the table, pipe cleaners, glue, scissors, colored paper, stamps, stickers and let Gabe and Boo go at it. Create! Work outside the boundries! It let's me see them outside of the frame I have created for them.

I have to remember that change is inevitable. Gabe is always changing. I may not see the change for awhile, but it's happening....all the time. I may be so focused on language that I miss him jumping 3x in a row over a ball! He is creating masterpieces all day long in his world. He is trying on different colors, different textures, different everything.

I mention all this, because we are at a crossroad again with Gabe and his need to be around other children. He wants to play all the time! (Hooray!) But, I can not provide all that for him. So where do we turn. We have been thinking of many options, but seem to find ourselves back at square one, public school. I like the frame I have for Gabe now, but his artwork is telling me something very different. Don't you think?

Fade Back

Around and around we went in the gym of Gabe's old school.
Skipping around in a circle, smiling at Gabe and cheering "Yeah!"
"This is so much fun!" Are you having fun too?" Gabe smiles back at me.
The music changes and we all start galloping.
I swear I hear the song "Just the two of us" begin, playing faintly in the background. This IS so much fun! Gabe and I. What a pair.
That's when I got the cue.
"Fade back."
"Let's see how he does on his own," his therapist says gently.
Already?
So soon?
Are you sure?
I step back, regain my breath. The older they get, the harder it is to keep up.
Looking over in his direction, I see that they are all now tiptoeing, pausing to put their fingers up to their mouth, "Shhhhh." Gabe giggles. This is his favorite part of the song.
And there he is...on his own.
Without me.
What happened?
Where did all the time go?
I'm not ready.
I really am not.
I know I should be.
I know I have to do this.
But he was 2 years old just yesterday!

Trust is a huge issue with me. Who will watch and make sure he is getting all that he needs if I am not there to guide, nurture and cheer? Does that statement sound arrogant? The assumption that only I could provide exactly what my son needs. I know in my mind that it is false, but my heart sways me a whole other direction most of the time.
I sadly and painfully let go of Boo this year when she started Kindergarten. Leaving her at preschool out of my sight was traumatic enough for me, so I was at least prepared somewhat mentally for the transition this year. Her severe allergy to peanuts just compounded my anxiety. I have days when I wonder if she will be coming home that day or will this be the last time I say goodbye? Sounds overly dramatic, but having an allergy that causes anaphylactic shock, puts the possibility of death at your doorstep everyday. You hope that the adults around her notice the warning signs, because those same signs can mask themselves to appear less threatening like the flu, and time determines the difference between life and death. She is still too young to give herself the shot. I do not know if she would anyway. Boo is petrified of her Epi Pen.It hurts. Boo and shots do not mix.
Either way, I know I would still be as neurotic and anxiety ridden with or without allergies or a diagnosis. That's just who I am. I have been "working on it" my whole life.

So, I stood back once again and watched Gabe. I have been doing that a lot lately. Sometimes restraining my hands by placing them in my pockets or under my legs when I sit. I curl my lips in, so as not to say anything when Gabe is asked a question by someone he doesn't know. I repeat in my head generalize, generalize. If I am there to always repeat the question he will never answer for anyone else. That is the hardest habit to break for me. It's so much easier if I create the first footing to the bridge of communication for him, so that's what I tell myself, eventhough I know it is not true.

Fade back.
I thought this is what you did during their teenage years, but then isn't that really when they need you most? When transition is no longer referring to letting go of blankets and pacifiers, but about serious life choices that could forever change the course of your child's life. Is fading back a road that other parents are already on? Our path seems so underdeveloped in some areas, with potholes and gravel, while other parts are as smooth as a new subdivisions entrance. I'm never sure whether I will need the SUV on a given day or will our compact get us to where we need to go safely without adversely affecting our alignment.

We received another birthday invitation today. Our neighbor's little boy is turning 4 years old. I had a hard time swallowing when I saw the number 4 right above Scooby Doo's grin. Four? Already? Gabe is 6 months younger than him. Gabe will be four soon. He'll also be 25 someday, but the number four means so many more things to me right now. Milestones that bring worry. The largest being, sending Gabe to school, very possibly a public one. The most terrifying test of all for me. The time where I will really be fading back. Where mommy's do not hold their child's hand throughout the day, protect from bullies and provide clear understanding of the wants and needs for their child.

I am, in effect, Gabe's public relations agent.
It's time for me to move out of the way.
I'm hogging the red carpet.
It's time for me to fade back.

Finally, Some Winter Fun

This is Gabe outside! In snowpants! Wearing gloves! And a Hat! And Boots! Can not forget THE BOOTS! But, only after we told him he could not watch TV later that afternoon if he did not get bundled up and go sledding. See the smile after a few times down the hill on his sled?














"Weeeeeeee! I want swed! (sled)!" -Gabe
We invited our neighbors over to sled the next day. One of their boys is Gabe's age. Gabe is so much bigger than him. I'm beginning to wonder how tall Gabe will end up being.
















The ice under the snow made it really fast! Boo liked it when I put a spin on her sled.



















SD and I had to literally catch the kids at the bottom of our hill or they would go into our woods.
Boo was really sad when our nature walk in our woods led to ice and water and we had to turn back. She was so excited to use her binoculars to spot animals and look for tracks. We have seen deer back in the trees and occasionally in our yard. It was too hard to find a good footing. Gabe kept pulling me along saying, "Come on mommy!" I was afraid we would break through the ice and fall in.

Hope you have had some good snow too!
Stay tuned for our winter 2007 snowperson.

To Coriander

Lay down
Your sweet and weary head
Night is falling
You have come to journey's end
Sleep now
And dream of the ones who came before
They are calling
From across a distant shore
Why do you weep?
What are these tears upon your face?
Soon you will see
All of your fears will pass away
Safe in my arms
You're only sleeping
What can you see On the horizon?
Why do the white gulls call?
Across the sea
A pale moon rises
The ships have come to carry you home
And all will turn To silver glass
A light on the water
All Souls pass
Hope fades Into the world of night
Through shadows falling
Out of memory and time
Don't say We have come now to the end
White shores are calling
You and I will meet again
And you'll be here in my arms
Just sleeping
And all will turn To silver glass
A light on the water
Grey ships pass Into the West
-Annie Lennox (from the song Into The West)

Goodbye, my sweet buddy. Goodbye.

The New Drug On The Street

Here at our house we are dealing with Noggin Crack. We have begun a very painful detox. Drastic measures had to be taken, but we are all pulling through it together. Some of us more than others. Oobi, Wow! Wow! Wubbzy! and "the all powerful" The Wonder Pets will now be viewed much less frequently. We were all caught off guard by Noggin's great programming. All of it wonderfully entertaining and new, so much so, that the toys stayed neglected, songs unsung, games unchallenged and pictures uncolored.

Noggin has affected Gabe the most. In the last week, he has begun to continuously sing the same songs, along with some of the verbage leading up to and after the occurance of the song within the episode. Which, as I have posted in the past, has lead to growth in his language, but recently the scripting has turned to perseverating with dialogue between characters being repeated over and over with dancing exactly like the characters in the opening credits. Charlie and Lola has been scripted and reenacted down to the slightest movement and giggle (There is Disney Smack). Gabe likes to imitate Lola the most.

As some of you know, Noggin starts at 6am and ends at 6pm. We also have Tivo and Gabe is aware of all our technological devices and their capabilities. I would say that one average Gabe watched about 1 1/2 hours in the morning (he gets up around 6:30 and leaves with me to drop off Boo at school) during that time we are showering, packing, dressing, eating, etc. He watched about an hour in the afternoon for quiet time and then an hour when Boo came home from school before dinner. That's about 3 1/2 hours! No wonder he was so strung out. What's funny is we were so busy going here and there, ABA everyday, preschool, gymnastics, playdates. It was the short hours we spent stopping off at home, before heading out again, that Noggin became a great way (crutch or my crack) of pausing to grab lunch, make phone calls or throw in a load of laundry. We all depended on it in one way or another.

So, today I began the detoxing processing. At preschool, Gabe turned to me when I asked what he'd like to do next, play with puzzles or cars, and responded with, "Watch T.V.?"
The Crack has gotta go!
When we got home, I turned off the power strip to the T.V. in the playroom and the Tivo in the Familyroom. I grabbed my Caribbean Jazz CD and started making us lunch. I could hear Gabe in the other room pushing the button to the T.V.
"Not working!" click, click of the button.
"Not working Mommy!"
I just ignored him and waited. If I even mentioned the T.V. and why it wasn't working, I do not think I would have given him the opportunity to figure out for himself what to do when the TV isn't on.
My God!
What do you do without the TV?
I know. Does he?
He came into the kitchen and immediately smiled upon hearing the music. I started dancing and he smiled some more.
Over lunch, we laughed and rubbed our tummies, celebrating the new chips, Ruffles.
"I want a BIG chip!" Gabe says with excitement.
We cleared the table and went into the playroom to *gasp* play and do Gabe's daily ABA programs.
It was so much fun! After almost two hours, I leave Gabe to play ,while I got a drink. Upon coming back I hear, "Watch TV?"
If Gabe does good during his ABA Programs he is allowed to watch a Noggin program.
So, I set the timer. I told Gabe when it goes off after The Backyardigans, that is the end of TV until Boo comes home. Then, she gets to choose one program to watch after that, TV is turned off until tomorrow. He handled it pretty well. There was only one loud, "No!" with a quick whimper. SD asked if he wanted to play Troll (A game he invented) and then all was well.

Now, there is a part of me that wants to go cold turkey. No TV. Only good can come from no TV. I've never heard of anyone suffering from not having viewed TV. But, we are just going to work on limiting it to 2 hours a day. One hour in the morning, and two half hours in the afternoon.
Wish us luck.

Just Say No To Noggin Crack

Things That Come In Three

My husband is a strong believer of famous people always dying in groups of three. What's funny is that he seems to always be right on mark. I'd call it coincidence if it had happened only a few times, but as circumstance would have it, it comes to fruition every time. Recently it was James Brown, Gerald Ford and finally Saddam Hussein. Our weekend also came with a strange equation that amounted to three.

#1
The first being the strange, but very irritating phone call SD (Super Daddy) picked up at work on Friday. It was by pure chance that he even answered his phone, because calls rarely ever go directly to him, because he is a teacher. It was a parent claiming that she heard from this person's neighbor's son's cousin who went to the party store and over heard from the person buying smack on the corner....Ok, that's an exaggeration, but the way I heard it from SD, she lost her credibility the minute she opened her mouth. Anyway, to make a long,with nails on the chalkboard, story short, she accused SD of pocketing funds from a trip that he puts together for his students. If you know SD, you're already saying," What the @!!!% " This parent insisted that she had seen his W4 and stated the company from which this bonus was given. The name she gave as being on the W4 was not even SD's name and he has never worked for the company that supposedly gave him a bonus. SD was not in a good mood when he came home from work.

Happy Friday!

#2
So, I thought, we could take the kids to play at McDonald's, have dinner and try to unwind. I really dislike fastfood more than you know, but 3 out of four would be getting something out of this trip, I didn't mind the sacrifice. Gabe got wheat free French fries from BK down the street and we were good to go.

It wasn't too crowded and the ages for good play friends had potential. Boo was short on the girl friends, but managed to find a boy to act silly with. Gabe hooked up with a boy who may have been about four who had a sister (twins?) There was giggling, laughter, running and big smiles. I think a big fear for most parents is whether their children will be liked. I worry for both of my children. Not, because they aren't likeable, because I adore and think both are fantastically wonderful, caring, hilarious, and spectacular in their own right. But, you wonder how the rest of the world will perceive them without wearing "mommy glasses".
After coming down the slide, Gabe runs up behind the boy he was playing with and next thing I see is Gabe being clobbered by that same child. Then, Gabe starts pushing back. I immediately yell, "Hey!" "No hitting!" They both stop and we call Gabe over. The other boy's mom never looks up from her book. She was right across from them.
I am furious, but assume it has ended and cross my fingers that Gabe does not go near that boy again. I watch nervously as Gabe climbs back into the play structure. "Rocky Balboa", the offending boy, comes running up behind him, passes him while climbing up and gives a good kick at Gabe's face, intentionally.

Before I know it, my chair squeaks over the greasy floor, I'm up and running, blood pumping through my veins. I could feel my face puff up like the Incredible Hulk. "You stop hitting my son!" I say loud enough for the drive through to hear, pointing my finger at the little monster.
Mom comes over lifts up the boy and I state again, in case she missed it while reading her book, "Your son keeps hitting my son!"
"Well, that's because he was pushing him," she retorts back.
I respond with a mix of anger and sarcasm,"He... Was.... Hitting... Him!" "He's only three!" I feel like I should be wearing a tank top, braless, on a Jerry Springer Stage.
Gabe comes down and starts eating his fries. He looks aware of what happened, but not as aware as my Boo was. We hardly ever yell in our house, so when SD and I raise our voice, it is a big deal. I am amazed at my reaction. Amazed that I have this instinct to squash anyone or anything that may harm my children. I am like a wild momma bear protecting her cubs. Kinda freaky in a way. I think I need to corral my emotions a little and bring it down a notch from Springer to Oprah.
10 minutes later and I wishing that our run of bad luck would end sometime soon, mom comes over with "the boy" and has him apologize. I also have Gabe apologize for pushing. I tell her I appreciate what she did and she smiles and says she is only the babysitter.

Happy Friday .....Again!

#3
Gabe only had a little compliance issue with his tutor Saturday morning, which was totally expected since this is only her second time over our house. I thought, "Whew!" If this is the third thing, well, we made it! This was where I did my happy dance and began to plan the wonderful possibilities for the rest of our weekend. We could turn it around. We still had time. I looked over to where my cat came walking through the kitchen and saw that he was limping. He is an indoor cat, 14 years old, in very good health. So, I thought, maybe he fell off of something. I immediately call our vet, get the last appointment. I wondered how they would put a cast on my little buddy. Could it be arthritis? Osteoporosis? A disjointed hip?
At the vets, they get him on the examination table right away. They observe which leg it was and begin to feel the bones in that leg. My face begins to get hot, the room spins and I feel like laying face first on the cold linoleum before I have the chance to pass out. Instead, I wash out his carrier just to keep from not looking at what they are doing. They decide they need an X-ray.

The X-ray reveals nothing about his leg. All his bones look fine. In fact, perfectly fine. Huh. Then she pulls up the next slide that shows the rest of his body from the side. She says that organs appear white and the lungs black because they are filled with air. Everything looks right to me. What should I be seeing, that I don't?
The lungs had confetti like specks all over them. I thought it was veins, they were tumors. Maybe 20 or more all over his lungs. My beloved pet was dying of Cancer and it had probably spread to his leg.

Happy Saturday.

What was even more....I can't even find the word....was that as I walked out of the examining room with my buddy in his carrier, the receptionist and another worker there were talking about Aspergers and Autism from the "I know someone, who knows someone" tense.
I wanted to shout, "Can you give me one God Damn thing to deal with at a time God? Can ya? Can ya? huh?"
The next day I wondered if God was trying to show me something. Was my cat a metaphor for Gabe's inability to tell me when something was wrong, that he maybe really ill and I would never know? I had dreamed this past week, before all this happened, that Boo died from a tumor. I woke up at 2am that morning afraid to go back to sleep. What did it mean? SD and I joke all the time about me thinking I have a tumor. Oh, I have a bad headache, must be a tumor. But, as I get older, I'm making more connections in life. I see and understand more of life's lessons. I just wish I could pick and choose the lessons I want to learn.

Letters brought to you by the Bathroom

While washing his hands this morning, Gabe starts spelling......D...a...n...? then it gets softer and softer. The noise of the water only enables me to try to unsuccessfully read his lips for some clue. But no luck.

"Dinosaurs?" I guess.
"No," Gabe smiles.
Then he it repeats again...."D...A...N....I......M....A...L...S", giggle, giggle.

Ohhhhhh. OH!
Did he just spell a word????

I know it is probably recited from a commercial, but then he maybe beginning to piece together how words and letters work together. He has known his letters and sounds for over six months now.Am I making more out of this than I should? Who cares, I say! What a great way to begin my day!

I love commercials!

Wishes

There are moments that moms and dads everywhere look forward to the minute their child is born. Most of these lists read the same, first step, first words, first day at school, all milestones of growing from a baby to a young boy or girl. For us we have been fortunate to be able to celebrate many of these milestones with both of our children. Gabe has surprised us on countless occasions with just how far he really has come. His language is more spontaneous, he is less impulsive, fantastic eye contact, beautiful smile, and is truly an engaging little boy. But, beyond that, there are small wishes that I still have. One of them came true tonight.

I have spoken about Gabe having been non-verbal/ non communicate at the age of 2. I remember, soon after putting the pieces together that Gabe was Autistic, crying on my neighbors front lawn, trying to explain what Autism was and believing that my son, who I love so deeply, would probably never call me mommy. My neighbor hugged me, probably having no idea what to say, and I feeling like my world had just caved in. That became my first wish. My small wish was for him to call me mommy just once. And it happened a few weeks after starting the intensive ABA program over a year and a half ago. While sitting at the kitchen table one evening, Gabe walked up to me, looked at me and said, "Mommy", then walked away. It happened so quick that I sat there stunned, mesmerized by the print on his shirt as he walked away from me. I then turned and stared at SD (Super Daddy) and said "Did you hear that?" "Did he just call me mommy?" I felt my eyes get blurry and wet, I began to cry. My first wish had come true.

My second wish happened tonight. SD typically puts the kids up to bed, wrestles with them,then reads them each a few stories and tucks them in so I can get laundry done, lunches made and pick up the house a little so everyone can mess it up again tomorrow. Before heading up to bed, each gets their individual medicine (mostly for allergies) then PJ's are put on and kisses and hugs are given to me before WWF begins in Gabe's room with loud giggles and thumps on the bed. Boo gives me numerous, sweet kisses and a great big hug. Tonight, I hear Gabe running up the stairs, so excited to wrestle with SD, forgetting my kisses.
" Gabe, come give me a kiss!"
Laughing, I hear his little foot steps come down the stairs, he rounds the corner with a big smile on his face.
"SMMMMMMAAAH!" He smacks his lips on mine.
"I love you Gabe," I squeeze a big squeeze not wanting to let go, but I eventually do.
"I love you!" he says to me with a big smile in return and runs away.

I have waited 3 1/2 years to hear those three words.

I love you.

My second wish has come true.

Sometimes the smallest wishes, the ones that get tucked behind the speech hopes, stepped on by the allergy fears and forgotten the minute public school is mentioned, are the wishes that are the best of all.

My Motto for the Year

Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
We ask ourselves,
Who am I to be brilliant, gorgeous, talented, fabulous?
Actually, who are you not to be?
We were born to make manifest the glory of God that is within us.
And as we let our own light shine,
we unconsciously give other people permission to do the same.

-Marianne Williamson

That is my motto for this new year. That is my motto for doing ABA Therapy,celebrating Gabe's sense of humor, for returning to the Stay at Home Mom Club, and my motto for instilling a pride and a sense of moral strength to my daughter and son.

So, this is what is on Gabe's plate for 2007...

-Two days a week at a speech based preschool (6hrs weekly)
-1 class a week of Gymnastics (1 hr weekly)
-1 class a week attending a regular preschool with peers (3 hrs weekly)
-3 opportunities (outside of preschool and classes) for playdates (3+ hrs weekly)
-10 hours a week of ABA (7 hours me, 2 hrs SD, 2 hrs. ABA Therapist)
-2 meetings a month with ABA Therapist /Psychologist)(2 hrs + monthly)
-2 opportunities for playdates/crafttime per month at ABA school (4hrs+ monthly)
- 2 speech sessions a week with Dr. Karen (1 hr weekly)
- Fine motor/ craft projects (1 1/2 hrs weekly)
- Storytime at the Library (possibly) 1x per week 1/2 hour

His schedule is packed! We are going to have so much fun :o) Our major focus will be to work on enabling Gabe to strengthen his skills with socializing with others. He is doing great with his ABA programs that focus primarily with intraverbals, fluency and beginning math, like counting. He has such a strong foundation for having friends. He wants friends and he is the type of person that will always enjoy having close friends. So, together we will build friendships, him and I. We're getting on the friendship wagon (some of us again) and Gabe and I will learn to go beyond what we know, what is comfortable, to the uncomfortable
and we will bloom.