Apparently I have taken quite the hiatus from my blogging.
Last post in June 2011?
I'm prompted to write today because I received the nicest comment on my "Diagnosis Day" post.
You mean someone is actually reading this?
It made me so happy!
Maybe I should keep it up.
Life has been the typical busy of our family with vacations, sports and other activities for three children, and all that other stuff.
Life is good and I cannot complain.
Without further ado...
Highlights for my son's life for the past five months:
Turned three, aged out of Early Intervention. Evaluated by Intermediate Unit (ages 3-5). We were shocked when they recommended placement in their Autism Support Classroom under the Preschool Special Ed program.
Say what?
If he is mild on the spectrum, why are they recommending him to be placed in this type of restrictive environment?
Visited classroom, met teacher and aides, decided to give it a go... at least for the summer. Had a good experience and decided to continue. School is M-Th from 9am-3pm.
1-3pm naptime? Suddenly, no longer.
Classroom environment is very clean, tidy, and calm. About nine children at any given time; all ASD and all verbal to some degree, ages 3-5 years old.
Classroom uses methods of Applied Behavior Analysis (ABA), Floortime, and Applied Verbal Behavior (AVB).
Little man receives speech therapy (ST) and occupational therapy (OT) each twice a week for 1/2-hour sessions in the classroom. These are prescribed through his IEP which, I have to be honest, I don't really understand much yet.
Started with an A-M-A-Z-I-N-G private speech therapist in June. She visits once a week while he is at his typical preschool on Fridays.
Note: I am impressed with how he has adjusted to attending two schools each week.
Significant strides with speech. Using 2-4 word phrases more regularly; working on proper use of pronouns (I/you, she/he). Articulation remains a challenge. Much of what he says can be understood only by his immediate family. Mostly me.
Recent follow-up with Developmental Pediatrician who diagnosed him. She was pleased with the progress he has made and wondered aloud whether her initial diagnosis was incorrect.
That scares us.
Because...
Although it would be great if he miraculously recovered (or it was all just a mistake from the get-go)...
We believe he is rightly on the spectrum. Rightly diagnosed.
We believe the classroom and the therapies he has received because of the diagnosis are what makes the diagnosis now appear, perhaps, questionable.
That borderline mild case.
Take away those interventions. He will regress.
That is our fear.
For now, it is agreed that his diagnosis holds. We will consider administering ADOS again in the spring.
There are so many more things that have happened, but I must stop now. Writing this all out again makes me realize that I really do need this blog.
Gets it out of my system.
And can be my link to other parents facing similar challenges.
Thank you, Laurie!
Tuesday, November 29, 2011
Thursday, June 23, 2011
Diagnosis day
I am still in the early phases of our son's diagnosis. Last week I was full of acceptance and now I am back to disbelief and uncertainty. These past two months have been emotional ups and downs, denial, anger.
I thought I was done flip-flopping.
Diagnosis day was April 26, 2011. My sweet little boy was officially diagnosed with Autism Spectrum Disorder (ASD) almost two months ago.
The appointment for this evaluation was made in November 2010 at the time of his initial EI evaluation, when he was about 20 months old. He had qualified for a CATCH ("Childhood Autism Team CHeck") team evaluation which I scheduled right away.
I remember being annoyed that the appointment was so far away.
How could we have early intervention for autism if we had to wait nearly half a year to have him evaluated?
And what are they talking about, AUTISM? He has a speech delay, that's all I want to address. What is this AUTISM business?
And then there was the limbo of not knowing that is so hard. And challenging. And difficult.
Our son's diagnosis was made by a team of evaluators including a developmental pediatrician, psychologist, and behavioral therapist.
Using the ADOS (Autism Diagnostic Observation Schedule) test, our son met the criteria for ASD. On the CARS (Childhood Autism Rating Scale) he scored 28 (with 30 being the cut-off for autism) and he also did not meet the criteria according to DSM-IV.
Taken together, and given that the ADOS is the current gold-standard for diagnosis, the evaluation team considered him on the mild end of the spectrum. I vaguely recall them mentioning that a year ago he would have probably been diagnosed with PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) but things, they are, apparently, a changin'.
We found out our sweetie's diagnosis on the same day as the evaluation.
It was a bit of a relief, to finally know something and to have a definite answer, but also surprisingly shocking. I am a strong person, but I could not help but cry at the news. In a room full of people who are all wanting to be supportive, I cried and it felt incredibly lonely.
I thought I was done flip-flopping.
Diagnosis day was April 26, 2011. My sweet little boy was officially diagnosed with Autism Spectrum Disorder (ASD) almost two months ago.
The appointment for this evaluation was made in November 2010 at the time of his initial EI evaluation, when he was about 20 months old. He had qualified for a CATCH ("Childhood Autism Team CHeck") team evaluation which I scheduled right away.
I remember being annoyed that the appointment was so far away.
How could we have early intervention for autism if we had to wait nearly half a year to have him evaluated?
And what are they talking about, AUTISM? He has a speech delay, that's all I want to address. What is this AUTISM business?
And then there was the limbo of not knowing that is so hard. And challenging. And difficult.
Our son's diagnosis was made by a team of evaluators including a developmental pediatrician, psychologist, and behavioral therapist.
Using the ADOS (Autism Diagnostic Observation Schedule) test, our son met the criteria for ASD. On the CARS (Childhood Autism Rating Scale) he scored 28 (with 30 being the cut-off for autism) and he also did not meet the criteria according to DSM-IV.
Taken together, and given that the ADOS is the current gold-standard for diagnosis, the evaluation team considered him on the mild end of the spectrum. I vaguely recall them mentioning that a year ago he would have probably been diagnosed with PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) but things, they are, apparently, a changin'.
We found out our sweetie's diagnosis on the same day as the evaluation.
It was a bit of a relief, to finally know something and to have a definite answer, but also surprisingly shocking. I am a strong person, but I could not help but cry at the news. In a room full of people who are all wanting to be supportive, I cried and it felt incredibly lonely.
Tuesday, June 21, 2011
God always has a plan
I had an epiphany today.
About 6 years ago, my husband and I decided to move from the west coast to Pennsylvania.
Pennsylvania?
That was the reaction most of our friends and family had.
We have no roots here.
Maybe this is all part of God's grand design for us.
We didn't plan on having our little guy - but we're pleased as punch that we do.
So he was a surprise.
And now we are tested with this diagnosis.
Another surprise.
And sitting here wondering what it would be like to be in California still, or had we moved back home to New York, or had we decided upon Boston.
What would the services be like for him?
We are told one of the best places to be for autism support is Pennsylvania.
Is this why we ended up here? This seemingly random place?
God always has a plan.
I'm sure there is more that has not yet been revealed to us.
About 6 years ago, my husband and I decided to move from the west coast to Pennsylvania.
Pennsylvania?
That was the reaction most of our friends and family had.
We have no roots here.
Maybe this is all part of God's grand design for us.
We didn't plan on having our little guy - but we're pleased as punch that we do.
So he was a surprise.
And now we are tested with this diagnosis.
Another surprise.
And sitting here wondering what it would be like to be in California still, or had we moved back home to New York, or had we decided upon Boston.
What would the services be like for him?
We are told one of the best places to be for autism support is Pennsylvania.
Is this why we ended up here? This seemingly random place?
God always has a plan.
I'm sure there is more that has not yet been revealed to us.
Friday, June 17, 2011
Aging out of early intervention
My little guy is about to turn three years old.
That means he will be "aging out" of our county's Early Intervention Program and into the Intermediate Unit.
The Early Intervention Program services children from birth to three years of age.
Today was the last visit from his Speech Therapist provided through the county.
There have been frustrations along the way.
I'm not sure how much the sessions have helped with his speech and language. Many of the sessions were spent trying to get my son to calm down so we could get to work.
I often say that the Early Intervention (EI) model for 0-3 did not necessarily work for us. The EI model for 0-3 in Chester County, PA focuses on teaching families - the parents - strategies for helping their child learn, to work toward a specific goal.
The goals are outlined in the Individualized Family Service Plan (IFSP).
I felt that the EI strategies for much of what our son needed was what I was already implementing. The same strategies I used with my other children.
Although I didn't know them as strategies; they were just part of how I parented.
I did learn some new strategies and some great new ideas, but I feel what we really needed for him was something different. As mom in the same room, in the same house, I was getting in the way.
In retrospect, I should have investigated other (i.e., private) services sooner.
But I digress.
Today's session was one of the best.
Did he somehow know that it would be the last session with this Speech Therapist? That he wouldn't have to endure the demands made upon him with her every week?
I will miss the weekly interactions with her for myself. One of the benefits of her visits has been personal support for me. I learned so much from her and our other therapists about the system, our options, the process.
She was one of his three therapists provided by the county. She was one of a handful of people I was able to speak to candidly about my son and his issues. And his diagnosis, his label.
I could not have survived the past half-year without any of these ladies.
The Early Intervention Program services children from birth to three years of age.
Today was the last visit from his Speech Therapist provided through the county.
There have been frustrations along the way.
I'm not sure how much the sessions have helped with his speech and language. Many of the sessions were spent trying to get my son to calm down so we could get to work.
I often say that the Early Intervention (EI) model for 0-3 did not necessarily work for us. The EI model for 0-3 in Chester County, PA focuses on teaching families - the parents - strategies for helping their child learn, to work toward a specific goal.
The goals are outlined in the Individualized Family Service Plan (IFSP).
I felt that the EI strategies for much of what our son needed was what I was already implementing. The same strategies I used with my other children.
Although I didn't know them as strategies; they were just part of how I parented.
I did learn some new strategies and some great new ideas, but I feel what we really needed for him was something different. As mom in the same room, in the same house, I was getting in the way.
In retrospect, I should have investigated other (i.e., private) services sooner.
But I digress.
Today's session was one of the best.
Did he somehow know that it would be the last session with this Speech Therapist? That he wouldn't have to endure the demands made upon him with her every week?
I will miss the weekly interactions with her for myself. One of the benefits of her visits has been personal support for me. I learned so much from her and our other therapists about the system, our options, the process.
She was one of his three therapists provided by the county. She was one of a handful of people I was able to speak to candidly about my son and his issues. And his diagnosis, his label.
I could not have survived the past half-year without any of these ladies.
Thursday, June 16, 2011
Autism spectrum disorder?
Just a short post today.
I'm sure there must be some discussion around the nomenclature about Autism Spectrum Disorder.
Or I would hope there is. I haven't had a chance to research any of that, yet.
But, DISORDER?
I object!
How about Autism Spectrum Disability?
I don't like that too much, either.
How about Autism Spectrum Syndrome? Autism Spectrum Condition?
I know I just posted A rose by any other name. I know this seems contrary to what was written in that post.
I make sense of it though, because I believe words have precise meanings and impart precise preconceptions whether consciously or subconsciously.
I'd prefer my child be judged on who he is and what he is able to do than to be stereotyped into a disability or a disorder.
I'm sure there must be some discussion around the nomenclature about Autism Spectrum Disorder.
Or I would hope there is. I haven't had a chance to research any of that, yet.
But, DISORDER?
I object!
How about Autism Spectrum Disability?
I don't like that too much, either.
How about Autism Spectrum Syndrome? Autism Spectrum Condition?
I know I just posted A rose by any other name. I know this seems contrary to what was written in that post.
I make sense of it though, because I believe words have precise meanings and impart precise preconceptions whether consciously or subconsciously.
I'd prefer my child be judged on who he is and what he is able to do than to be stereotyped into a disability or a disorder.
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