Thursday, December 31, 2009

Torture aka Behavior Therapy

I went to pick up some dry cleaning today and as I was pulling out of the parking lot I noticed this huge billboard advertising for a behavior therapy center. In bold letters across the bottom of advertisement it said "Treating Children with Autism".

It struck me as odd that a behavior therapy center would need or want to advertise like that in such a mainstream forum. Is autism really so common now that we're going to start seeing billboards marketing to parents? Or is it that there are not that many cases compared to the number of therapy centers around here so this place is trying to get their name out there? I'd like to assume the latter but I'm betting that it is probably because of the increased number of diagnoses out there that we may be seeing more and more of this.

Allison does behavior therapy in our home once a week. It is pretty intense. Her therapist is working with her on compliance issues for most of the session which causes a great deal of tantruming and screaming. It makes me feel terrible watching Alli go through that. I have questioned myself many times about if it is worth it or if it really works for her. I feel like I'm paying $55/hr for someone to come in and torture Allison. It is so bad that J can't stand being home when it is going on. The cats even hide.

However at the end of the day though, I'm going to say that I believe in it. I have seen Allison show her will and make progress with the therapist. I think behavior therapy is very important in the grand scheme of things. Truly if we could breakthrough to her with compliance issues just a little bit more it could really make such a huge difference. If she could/would follow directions or participate in certain tasks with us it would be amazing. So for now the weekly torture sessions will continue even if it makes me feel like a mean mommy.

Wednesday, December 30, 2009

A touching discovery

This article was passed on to me by one of my facebook friends. It discusses a newly uncovered fossil of a child that would most likely have been severely mentally impaired. It seems that early humans, despite possible limited resources, chose to care for this child.

Every time I see stories like this I am prone to imagine what would have happened to Allison if she had been born in a different time or culture. For many years, even in our own country, children with special needs were sent away to institutions or not cared for adequately. I can't imagine as a mother not caring for Allison or sending her away. It breaks my heart to imagine what has happened in the past to other disabled children.

However, this article is contradictory to that. It shows that perhaps that mothering instinct has been with us for longer than we thought. I thought it was interesting.

Tuesday, December 29, 2009

Heaven's Very Special Child

We are not a religious family, but this poem (published through the Dear Abby column) really touched me. It was written after the birth of the author's daughter who had Down Syndrome. In many ways it seems applicable to our Rett angels. I have the newspaper clipping on our fridge.

Heaven's Very Special Child, by Edna Masimilla

A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above-
"This special child will need much love.
Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From the folks she meets down there.
She may not run or laugh or play,
Her thoughts may seem quite far away,
So many times she will be labeled
'Different', 'Helpless', and disabled.
So, let's be careful where she's sent.
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon they'll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild,
Is heaven's very special child."

I am very thankful we have as much as we have to give Allison, emotionally as well as financially. My heart breaks thinking about other disabled children who might be born into less than ideal circumstances.

Saturday, December 26, 2009

The beginning

How did we get here? I ask myself that question every few months. It's been a long road, but perhaps we should call it the road less traveled. It has certainly made all the difference.

On July 11, 2007, my beautiful 27 month old daughter Allison was diagnosed with Rett Syndrome. This day was probably the worst day of my life. It was definitely a day that I will remember as being the day that everything changed.

That day, Allison had a seemingly benign appointment scheduled with her pediatric neurologist for what I thought was a medication check. 5 weeks before, Allison had a battery of tests done to help us understand her speech delay and some of her quirky behaviors. There was an MRI and lots of blood work, including a test for Rett Syndrome (which the neurologist has brushed off as being only remotely possible to my relief). Every few days we got more results back- MRI normal, karotype normal, metabolic panel normal...

On the morning of July 11 we thought we were on the road to recovery and improvement. Allison's seizure medicines (given after an abnormal EEG) had seemed to cause in increase in her vocalizations. The neurologist was pleased and felt that her seizure activity might be normalizing and her diagnosis of epileptic aphasia could be treated. We were full of hope that we were on the right path to helping Allison "recover" from this little bump in the road of her development.

I should have known something was wrong when we were called back into the exam room. The neurologist herself came to get us from the waiting room. There was no usual weight or blood pressure check. She started off asking us how we were doing and then made some comment about wishing I had brought my husband with me. I was confused and then she said that she had gotten back some of the genetic blood work for Allison and that it showed a mutation. I immediately felt a knot in my chest because we had only had two genetic tests done- Fragile X and Rett Syndrome (which I had myself requested after finding the disorder through googling speech delays). I was terrified of Rett Syndrome. To me it honestly seemed like the worst case scenario.

After a moment of silence, I asked her "which one is it?" as she seemed to have forgotten that she hadn't told me which disorder Allison had. Time stood still as she said to me "It's the Rett."

With those words it was like the floor opened up. I felt like I was falling. I stumbled and stammered and asked questions about what Allison would be able to do and the doctor, I clearly remember, lied. She told me Allison could still go to school and would learn to talk. She told me that Allison was doing so well that her regression had clearly passed and that she was surely "a shade of grey". (Unknowing to her, I clung to that phrase for weeks in the hopes that it meant that she didn't really have Rett like other girls with Rett.) The rest of the visit is a blur. I know that she referred me to a genetics specialist, which I thought was in case J and I wanted to have more children. It was several weeks before I realized I should make an appointment for Allison.

I drove home from the doctor's office that day in shocked silence. At one point I caught a glimpse of Allison in the rear view mirror sitting in her carseat smiling and looking out the window. She was totally the same, but I was wrecked. The tears finally came and I was sitting on the interstate hysterical wondering how her life would be, if she would hurt because of RS, and how on earth I was going to tell my mother.

The first few weeks were deep and dark. I started researching and reading more and more about Rett. Within two days of the diagnosis, I had a parent support person from IRSF call to speak to me and she was an amazing lifeline. A few days after I heard from yet another parent of a girl with Rett who lived in Florida. Soon, I had emails from other local families some of whom were only a few months further into their diagnosis than we were.

It took time but I soon realized that our daughter is not a diagnosis. She is not a syndrome. She is her own unique and perfect self. I learned to stop comparing her to other typical children and even to other girls with Rett. I have learned to accept her as who she is because she is truly unique.

This blog is going to be about our life and how we have learned and grown from this diagnosis. It's also going to be about some of the daily struggles we experience. Some days are easy and some are unbearably hard. What keeps us going from day to day though is Allison- her smiles and her love. On this road less traveled, she has certainly made all of the difference.