Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Tuesday, June 29, 2010


Because I'm in school at this stage in life, I've developed friendships with people who are the ages of my sons. 18 to 25 year olds (my sons are 18 and 20) who have their entire lives in front of them.

Some of them are irresponsible, lackadasical and carefree.

Some are hard working, have a goal and working toward that goal, but love life, have fun with their friends and enjoy each moment of every day.

Other's are so focused on their futures that they have no time for the here and now.
Each grade, each class, each decision made, on a daily basis, impacts their future. (or so they think).
They spend their days fretting about how they are going to get there, what they are going to do when they get there, what job they will have, where they will do that job, what city they will or will not live in, who they will or will not be married to and how many kids they will or will not have.

They worry about if they will have kids, how they will balance their career with those kids and they worry about choosing a career NOW.

They spend so much time in the future that they are not experiencing life at it's fullest. They are missing out on the joys of early adulthood. They spend most of thier time with the older students like me, asking questions and basing decisions on choices that my peers and I did or did not make. They mistakenly see me as a peer, when in fact, my peers are the non traditional students going back to school in middle age.

Asking for our wisdom ..that's one thing, but balancing their lives on our answers ...seems to me to be a way to miss out on some important experiences.

I so wish that I could tell them ... for this night, put down the books (unless there is a test or a paper due tomorrow) and go to that pool party you were invited to. Go shopping with your girlfriend. Go watch that 4th of July fireworks display. Sit in awe at the meteorshower display with your friends ..while all those whose bodies have long since decided that midnight was too late to be up have gone to bed. Enjoy this moment of your life. It WILL pass too soon and when it is gone, you cannot retrieve it.

You cannot relive it. You cannot have these days back ... they are yours for the grabbing ...so grab them! SEIZE THE DAY!

The time for careers and choices is coming all too soon.
When you're 45 and you're in college and you have no degree ...that clock is truly ticking ...when you're 20 and you're in collge ...do your best ...get the grades, but live this life ... your clock is ticking too ..but not the same clock ... it's a different one .. one of freedom and fun and fearlessness ...

Please .. please put down the goals for tonight and pick up the beach towel ... enjoy yourself while you can. Your career will be there ... I promise you ..tomorrow will be here all too soon and you'll wish these days were here again.

Sunday, June 20, 2010

More Revelations

He Knows My Name (Tommy Walker)
I have a maker He formed my heart
Before even time began
My life was in his hand
He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call
I have a Father
He calls me his own
He'll never leave me
No matter where I go
He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call.

My name, something I've blogged about a few times. It was a source of irritation to me on many occassions but the one thing that God used to get my attention.

Recently, it has been brought to my attention,by God that he wants more from me ... for me to do more than serve him ...but to rely on HIM instead of me. To break down the walls that I've had up and to allow not only Him, but others in as well.

So, this morning, I go to church and we sing a couple of songs that have really hit home over the years and then ...we sang the one above ...
He knows your name
He sees each tear that falls
...and there I was, again, in public with tears falling down my face.

I wish I could see where this journey is taking me.

Saturday, June 12, 2010

800 and counting

In November 2004 I began my journey into the blog world. I had no earthly idea of what I was getting into, the people I'd 'meet' and the things that were in my head just aching to get out.

As I pondered this 800th post, I thought about doing a review of my favorite posts. A review of the different type of posts. A review of ... and I worked on one and wound up feeling rather tangled in the mess that is my blog. I started to blog with the idea of it being a medical blog. Though, honestly I didn't know what that was at the time. It wasn't very long before I found Grand Rounds and participated.

I also found that I have little tolerance for blogging much about my health issues. Most of the posts have been done because I was emailed a question. That was the other odd thing I found. People not commenting but emailing me. In an attempt to get more commenters, for a while I removed my email ...but all it did was reduce the feedback. Commenters that did comment were still commenting, but those that had communicated through emai, stopped. So I put it back.

One of the most important aspects of my blog, for me, was the ones I posted on my eating disorder. It brought a very secret habit to the open ... honest and sometimes raw ... it left very little room for me to ignore the self destructive nature of the habits I'd worked my way into participating. I wonder, at times, had I not come out with the eating disorder if I'd not have retreated fully into that until it took my life.

I posted about my journey to get a house through Habitat for Humanity. I posted about my health. I posted about my issues with my sons education. I posted about my family issues. I've posted about many different area's of my life. The one I've enjoyed the most ... my choice to go back to school and the journey that has taken me on.

When I started to post, I was a mother of young boys, I was fighting Lupus and Myasthenia Gravis. I was the wife of someone who had a significant battle with polio and post polio syndrome. I did not see into the future ... I was too busy fighting today. Through many processes, including being successful at the difficult process of getting a house through Habitat for Humanity, learning I had more to offer a church than wishing I could do more .. I learned to find a dream ...and I learned I had what it takes to make those dreams come true.

Probably more importantly, I learned that I value my health ... and will do anything to be the healthiest I can be ... including learning to eat right and to not participate in the slow self destruction that I'd done since I was 14. I wish I'd learned before I developed gastroperesis, lost my teeth and developed polyps on my throat ...but I have learned.

I have learned that I can stand on my own. I've learned I can do things that are hard. I've learned I can be what I never dreamed I could be. I've learned that I am a person.

While I've made quite a few strides in the treatment for the eating disorder, my therapist has decided it's time to address some of the peripheral issues. Some, I agree with (my perfectionism) some ... not quite so sure (body image). I honestly don't see the point of working on body image while I'm on prednisone. While I'm the weight/size that I am ...what good will it do to try to appreciate what is not appreciable? I'm willing to work on it..but it does seem a bit of a waste of time/energy. *shrugs* I will possibly post about it as time goes by.

So, here I am ... finishing up the 800th post having said not much of anything, except that my blog has been a journey that I'm glad I have taken. I appreciate those that I've 'met' through this blog and have enjoyed reading many blogs out there of many different styles. Thank you, the few readers I have left, for sticking with me. Thanks for the encouragement that you've offered, particularly when Don was in the hospital 3 years ago and as I've headed back to school.

Friday, June 04, 2010

I looked at him ...and it didn't make sense.

Benjamin was not even 3 yet. The Sunday paper had a great big article on autism. Coming from a family of special education teachers, it caught my eye. I became alarmed as I read the check off list.

Delayed speech
Little to no eye contact ...check
Little or no response to name ...check
Appears deaf at times ...check (he'd had his hearing checked 6 times before his 2nd birthday because of this trait)
Plays alone in a group of kids ...double check ...unless he can hide in a closet ..then he won't even parrallel play
Robotic speech ...check

by this time, I was terrified. We'd already had so much going on with him ... starting at less than a week old.

Self stimulating behavior
...check ..but that was the first time I could put a label on his constant spinning, banging into walls and hand flapping.
Inflexibility (routine oriented) ... CHECK
Moves constantly ...check, double check and triple check ... this was one way he earned his nickname Tazmanian Devil
Reactive to sounds, lights, textures, smells and flavors ...HUGE CHECK
He had all that and then some. He threw up daily because of his sense of smell, taste and reaction to textures of food in his mouth. He would not ..could not ..mix textures. No casseroles, no sausage biscuit, no biscuits and gravy, hamburgers were taken apart to eat .an if food was mixed ... there was no way in God's green earth it was going to be eaten by him.
He could only wear clothes of certain textures and socks were pulled over the toes on top of them because the seam of the sock was unbearable.

The next morning I called the family doctor for an appt. I couldn't talk. I handed him the newspaper and this giant, gentle man had been standing and suddenly was sitting down ...with a bit of color lost in his face.

He said it was all too possible. He would make an appointment for him to see the neurologist (Benjamin had been with a neuro since he was 2.5 months old)

We got into the neuro the next day.Again, I couldn't talk. I showed him the article and he looked at me, looked at Benjamin and said he'd be referrring us to a pediatric psychologist and a developmental pediatrician. The Developmental Pediatrician, just down the hall from the neuro (in Children's Medical Center) just happened to have an opening right then because of a cancelation. The neuro went with us to her exam room. We gave her a history ..thank goodness he was there, I was rather stunned.

The neuro left and she started to exam my son.

She said to keep the appointment with the pediatric psychologist. She'd do a full developmental eval, but, yes, the diagnosis is Pervasive Developmental Disorder -NOS. I had no idea how familiar I'd become with the new letters in our family's alphabet soup.

The developmental pediatrician gave us the CARS ...Childhood Autistic Rating Scale.

One of the most alarming symptoms that we'd found odd was his lack of response to pain. None ... he'd grab my hot curling iron and never react .. a few days later I'd find an infected burn. He'd try to reach his hand into boiling water to get at the potatoes or into an oven to get at the chicken. Thankfully he never succeeded at those, I was on constant alert if he was awake ...but, one time I did get a rather uncomfortable and nasty break to one of the bones in my feet when I realized he'd gotten a chair to the stove and spaghetti was being boiled. I tripped and down I went, which distracted him

When the evaluation was done ... which was a full 8 hours, done over 4 days in 2 hour segments ... she sat my husband and I down. She explained that the CARS had a scale of 1 to 60. 30 to 60 was autistic, and 20 to 29 was autistic characteristics. Benjamin scored a 39. Well into the autism range.

We then went into high gear. No internet in those days, but I stillmanaged to learn probably more than I could learn now. I joined the Autism Society, a mom's group and they increased his speech therapy to 2 times a week and OT to 3 times, and PT from 2 times a month to 1 time a week.

We learned about ABA and Sensory integration therapy in OT .. we worked hard.

After several years ... he was in the first grade (without an IEP but that's a story for another day) I realized that everytime I brought up the Sensory integration therapy his OT changed the subject. Frustrated, I decided to find out more. I was angry and frustrated that for 6 years we thought we were getting SID therapy in addition to regular therapy and he was only getting standard OT.

I was frustrated, angry and scared .. I went to my physical therapy for a post operative session and the therapist was asking about Benjamin. He then asked me if I'd talk to the pediatrician about moving his therapy to that place. I did, he did and so ...we did.

SID therapy was 2 times a week, standard OT (including using handwriting without tears).

We saw remarkable improvements. One of my main desires for this child would be his sensitive stomach ... any strong smell, good or bad, resulted in his throwing up. Daily he threw up. All I could think of was that no one should have to throw up every day. And we were dealing with Barrett's Esophogus with my husband and I couldn't help but wonder if he was not at risk for that as an adult.

During this time I was a very frustrated (and scared) mother. I'd go to the autism chapter meetings and the autism diagnosis made sense. I'd read books about it and it would make sense. I'd talk with other mom's of children with autism,and it would make sense. I'd talk with the doctor's and it made sense, and I'd look at Benjamin and it didn't make sense. (I'd said this to friends on many occassions)

We did so much in the sensory stuff, but the brushing that my friends had found sooo benificial, I was unable to do. My own health issues left me with the inability to do it. Brushing with the wrong pressure could backfire and make things worse.

My OT heard about an addition to the brushing therapy and given Benjamin's oral issues, was facinated. His boss sent him to Denver to a workshop to learn the method from the same woman who came up with the brushing therapy.

He came back to Tulsa, and his first day back we tried it with Benjamin. It was the same principal as brushing, but for tastes, textures and smells ... OT had been told theoretically it could effect all his sensory systems, but it was only really going to be effective on the mouth/nose.

So, we did it.
That night I had one very angry little boy. He hit me, he bit me (he'd never bit anyone before and here he was at 9, biting someone!) The next morning, I did the therapy and he bit my finger ... HARD. A few minutes later, he poured a mountain dew down my back. Frustrated I was going to tell the OT the next day that it didn't help ... in fact it made things worse, my child had changed personalities overnight!!

We got up to go to therapy and my husband went with me to help figure out the new plan. We took Benjamin to a diner for breakfast. We got him the standard breakfast and then became almost angry when he mixed the whole plate and poured gravy over the buiscuts, eggs and sausage mess. Then he did something that still sense shivers up my spine ..he sat there, still ...and ate it and did not throw up. It dawned on me that he'd not thrown up even once since before therapy on monday. This is a child that started throwing up (projectile, not spit up) before he was 10 hours old and had continued to do so without missing a single day .. sometimes several times a day. He'd gone 2 days ... he was eating mixed foods.

The change was remarkable ...and fast ... he, to this day, has not thrown up because of smell or texture. The only time he has has been when he has a migraine or stomach flu.

Time went on, the therapy continued and this child started to emerge from what we'd always known as Benjamin. Eye contact ... self stimming all but extinguished ... interactions with other children ... one by one the autistic characteristics disappated.

We recieved a letter that the developmental pediatrician was moving and wanted a final appt with Benjamin. She'd not seen him in a year and we walked in, he held out her hand, made eye contact and initiated a conversation (he had to, Dr. R was too stunned). She pulled out a CARS form ...and his new score ....


From a 39 to a 14.

I've spent years saying that what we had was a 'proper misdiagnosis' ... he'd fit the profile/diagnostic criteria ...but his real diagnosis was Sensory Integration Disorder (along with TS/OCD/IQ of 80/Auditor & Visual Processing Disorders)

Thankfully, the pediatric neuro had been firm about any diagnosis could be 'fluid' ... just because we say A today, doesn't mean tomorrow with changes ... in Benjamin or in medical science ...and tomorrow could be a P and the next day an H.

Today, his IEP lists popularity and above average social skills as his strength.

Sensory issues crop up now and again and I remind him to do the oral therapy. Usually 2 or 3 days of it and the SID gets back under control for several months.

Our journey into the world of autism lasted from age 2 to age 11. 9 very long, painful, and terribly frightening years.

But I learned sooo much ...about perseverance, about determination, about coping and most of all ..about change.