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.

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.

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.