Tuesday, April 24, 2007

My Third Start


















*
*
*
I have actually had a few things to talk about, but after I purged them out onto my cyber canvas, they didn't seem to be able to sustain the dimensions of the page. They just fell flat, sprawled out, taking up space. So, that left me here with these random thoughts that have been floating around in my mind lately...

#1
What classifies something as an epidemic? Dictionary.com defines it as something that is extremely prevalent and widespread. So, with that in mind, even with the argument that just more children are being labeled as "on the spectrum" due only to diagnosis criteria, isn't Autism still an epidemic? I read a parenting magazine yesterday, while waiting in an office, that was clearly trying to convince parents not to buy the hype. What is that magazine trying to sell? That Autism is just a figment of some people's imagination and it doesn't normally happen to good people that read their magazine?

#2


I still love to walk. I walk as much as I can, because it keeps me sane and a whole lot less anxious. One thing I have noticed is I have great toned legs that I can now flex and show an impressive muscle. However, that same muscle that helps also to tighten the rear is still resting under *ahem* a few extra pounds . These unwelcomed pounds are making my pants tighter and less forgiving. God has a sick sense of humor when it comes to my body.















*



#3


Gabe is still doing great, in fact we have left the "ABA trial table". I work on his programs incidentally throughout the day through books, play and general conversation. His last day in his speech based preschool will be in June. In the fall he will attend a regular preschool. I have begun to create a flyer to give to the teachers about some Gabe-isms.


*


*














*


*
Some Gabe-isms
1) Sometimes I repeat what people say when I don't know what to say. Just ask me another way. There are times I may need a little extra help.

2) When I am hurt, I may not tell you. Sometimes I say "No, I'm OK" even when I am not. If you ask me very specific questions like "Does your knee hurt? I will be able to tell you. I may even give a little hug.

3) I am allergic to many foods. I am also a pretty picky eater. I don't mind only eating what mom sends from home. She also packs special treats in my bag in case someone brings in a special treat I can not have.

4) There are times I get so excited about something that I may ask for it over and over. Mom reminds me what she said and then lets me know if I ask again I may not get what I am asking for. I have to admit, this technique works well with me.


Those are a few that I have thought of. I don't want to mention that he is Autistic, although they already know, for the simple fact that I believe people see the word Autism and think of its stereotype before seeing Gabe.





Here are some more thoughts....


#4
With Melissa's great advice, I am going to call and make an appointment for my thyroid this week. Thanks Melissa!

#5
We have had quite a few schools on lockdown since Virgina Tech's shootings, because of similar threats. The school locks all the doors, outside and in, the teachers remain with the students in the classroom, while police officers search the school. It can be very scary, real or not. SD is a school teacher. Everyday now I wonder if he will be coming home. What has happened to our world?














*
*
So, there you have it, my current state of mind.


Tuesday, April 10, 2007

Change

Did I mention that change is difficult for me sometimes? Even though, I know it is inevitable? That it is happening even when I swear it isn't? That I am so hell bent to keep this fast pace of therapy for Gabe that I missed the flags declaring the last lap of the race?












*
*
*
-Gabe is age appropriate for his ABLLS -R (Assessment for Basic Language and learning Skills- Revised).


He
is age appropriate!

He walks, talks and acts like a soon to be 4 year old.

He is picking up things at lightning speed. Gabe is filling in a lot of the gaps all on his own-no program, no fruit snack reinforcers....just Gabe putting all the pieces together. He has not completed the ABLLS, but he is on his way!

*LOUD APPLAUSE*
*Bring in the band! *
*Swedish Fish for everyone!*


















I wonder, silently (selfishly?), where does that leave me? What I mean is, what role will I play now? I obviously will still be Gabe's mom, but his needs are different. It feels like a shift, movement of the earth's plates, similar to your child entering the years of being a teenager. The years where what you thought was right, could be so very wrong. How do you navigate that world?

I left the NT world 2 years ago. I left the phony friendships that were based on where you live, what kind of house you have and the image of being the "perfect" mom. I was scared, but somewhat relieved. I was losing that race quickly, I was more interested on where I was going with my kids then who was running next to me and if they were wearing the "right outfit".
*
*
In return, after venturing forward in a completely different direction, I was then unconditionally embraced by this Autism Ring and other parents with children on the spectrum. I found a world that revolved around what it truly meant to be a parent, especially a mother. I have felt more of a connection to the amazing women and men through our Autismring, than neighbors I have lived next to for the past five years. I have cheered, cried and sent good vibes to many who have posted ideas and thoughts about their children that have enabled me to push through another day. I will forever be grateful.
*
*
When I am asked about what I think are the first things a parent with a child newly diagnosed ASD, I always say, get the best evaluation you can afford, write everything down (everything) and read blogs or journals by other parents with children who have ASD. You can begin to feel very alone and just reading other parents thoughts can be very comforting. The world of ASD doesn't have to always have horrible connotations. I have found that doorways exist here that would've never been opened anywhere else. I have had many doors closed with the mere mention of ASD, painfully, right in front of me. There were also many more opened for me by another caring parent who just knew what it was I was going through with Gabe, because ASD had touched their lives too.
*
*

My son is ready to move on. He is ready to explore beyond the world that I have created. He is dipping his sweet, little toes in the crisp, cool, spring puddles. He is dancing around the edges, laughing at his reflection, admiring the ripples created by the gentle tap of his foot. I, however, can't help but hover, anxiously, arms poised to catch each and every possible fall. I am on the sides, trying to cover the puddles with my coat, hand within reaching distance, hoping to guide him safely around them. I am still the mother that worried about her son night and day, spent late evenings reading anything and everything about Autism, called doctors and pursed answers. I can't just flip the switch to off and leave that person behind. I can't seem to even dim the light.

Am I out of my mind?

This is the path Gabe has created. This is where he needs to go. All his therapy has lead him here. Isn't this the road I created? Shouldn't I be skipping, running towards the end?

I am.
I am overjoyed.
I am estactic.

With it comes anxiety (Can it be true?) Hope that seems so fragile (How long will it last?) Self doubt (Will I recognize when he is having trouble again?)

I know that we are heading in the right direction. The world just looks different. Sunnier perhaps? More flowers? More smiles?

Change is hard for me, but it seems to really work for Gabe
.

Friday, March 30, 2007

My thoughts on the book Strange Son by Portia Iverson















It has been two years and a half years since I first heard the word Autism float through the air and into my thoughts. It has been an incredible journey. I know that sounds cliche, but I do not think, personally, that there are many journeys in life like this one. Maybe that is my own ego erupting with, "Autism is something that only those close to it can understand." But, it changes you, your family, how you see the world, whether you like it or not. I have found that some changes were very painful for Gabe and I. Such changes forced us to stretch our thinking and ourselves in understanding how to continue forward, while still embracing each other's limitations. Some changes have opened my eyes to a world that does not lend itself to a "wait and see approach". The world of Autism has many different countries with numerous dialects. What is acceptable in one country of Autism, may deliver a totally different response in another. Each day the language may change, current currency exchange may rise and fall, and the day's special could be something wonderful you never even anticipated.

I remember what it felt like to have a child that never interacted. My son's absent smiles, toys that were more preferred than me and the empty look as he gazed off in the distance. Gabe tantrumed constantly about almost everything from getting into the car, eating or putting on his coat. Everyday things became huge mountains to climb. To top it off, Gabe was non verbal without any use of gestures. When some days became too much and I needed a little reassurance that we would make it through this. I would long to hug Gabe. But, giving him a hug was received as something painful and unloving to Gabe. He would so desperately want to get away from your touch. As parents we felt like our son was unreachable in every way a parent should love their child. He was in his own world and we were not welcome.

I was fortunate that that period lasted for only a year. It was a year of desperation, loneliness, and anger. Anger not towards Autism, but towards the medical profession for taking the stance that my son was not worth even exploring the possibilities that were starting to emerge. I had many doors shut in my face, phone calls gone silent, and blank stares during that long year. It is the part of my journey with Autism I would choose not to relive again. As a mother, there is nothing more heart wrenching than when someone shuts the door of possibility right in front of your child.

All these memories have been stirred to the surface since I started reading Strange Son.






















The title makes me shiver every time I pick up the book. Strange son? How could a mother choose such a title for her book about her son? I almost didn't put it on my birthday list, had I not heard that she also did a lot of research about Autism and was the driving force behind one of the largest Autism Groups, CAN (Cure Autism Now). As I read, I begin to understand her choice for the title. It is not a word that denotes seclusion, lower status in intelligence or perpetuates the stereotype that follows Autism everywhere, but rather, the reaction from the world to her son, the wall of denial that was built too tall to climb, to overcome, the strange circumstance that no one knew what to do with Autism everywhere in regards to research, schooling, health care, or in creating an atmosphere for success for these children. The strange world you are thrust into when your child is diagnosed with Autism. It is a third dimension, sometimes created by Autism itself, but mostly by the uneducated community that surrounds you.

So, those are my thoughts for now. I am only about 1/4 the way through and am hooked. I admire her drive and tenacity. I also am saddened by her sense of loss she feels with her son. I wonder if I could have kept hope for Gabe for so long had he never improved with ABA, Speech, outstanding therapists and the incredible bloggers that keep me sane everyday with letting me know I am not alone and neither is Gabe.

A couple things to remember when reading this book, the author's journey began almost 14 years ago. Her and her husband were alone in their journey. There wasn't an incredible group of Autism Bloggers, Yahoo groups (Yahoo started up around 1996 publicly), and the Internet was hard to navigate with little or no medical listings. Another aspect to consider, Autism was completely dismissed by the medical community. We are still being quieted by our doctors being told our fears are unwarranted, when in truth they just missed the blatant warning signs. Can you imagine if every doctor said and felt the same thing? That your child was mentally inferior with nothing of merit to contribute to this world? Children were still being sent to institutions. Special education and the public schools? I can't even imagine the atrocities.

So, with all that in mind, I applaud her. In fact, standing ovation. When there was no one, nothing for Dov, she made something. It may not have been the same thing we would choose today for our children diagnosed with Autism, although I can not imagine what she possibly did not do for her son, she did something where there was nothing. That to me is amazing.

Tuesday, March 27, 2007

OK, Let me just explain....

Last night, SD turned to me and said with an eyebrow raised, "Autism for Dummies?"
He was looking over my Books I had read on Autism over in my side bar of my blog.
"Do they really have a book for Dummies about Autism?"
"Yes. " I pause, embarrassed by such a title and the fact that it is indeed a part of my cherished library at home. "But let me explain..." I stop what I am doing in the kitchen and look through the window that opens to where SD is sitting on the couch, lap top in hand.
"The reason I bought that book, although extremely difficult as it was with such a title, was due to the fact that it had a few very informative chapters on government assistance, agencies and support groups." I explained with conviction that I had indeed made an appropriate purchase.
SD smiled at me, then replied,"I just thought it was funny that they had one about Autism, that's all. The For Dummies books can be very helpful."

Oh.



Thursday, March 22, 2007

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)

Monday, March 19, 2007

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.

Saturday, March 17, 2007

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?

Wednesday, March 14, 2007

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.

Thursday, March 08, 2007

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.


Saturday, February 24, 2007

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!

Thursday, February 15, 2007

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.

Monday, February 05, 2007

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 w
hen 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.