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.
Thursday, June 23, 2011
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.
Wednesday, June 15, 2011
Hindsight is 20/20
You always hear that "early intervention is the key". In retrospect, I wish we had started even earlier.
I do recall questioning some things even when he was an infant. He was such a quiet baby. He rarely cried. He didn't babble. He was just. so. good.
Had I gone with my gut feeling that something was developmentally wrong with my son, I probably would have started the process of getting him the support he needs when he was around 10 months old.
But hindsight is 20/20.
And everyone assured me he was fine and that was fine with me.
He's the youngest of three children - his older sisters are talking for him.
He's a boy and boys develop more slowly than girls.
You are a good parent and good at anticipating his needs, so he doesn't need to talk.
He's just a really good baby - just you wait, before you know it he'll be talking your ear off and you'll wonder why you ever wanted him to talk!
Friends. Friends with children with developmental delays and other special needs. Family. The pediatrician.
I do not place blame. I was fine with these words of reassurance because my fear of finding out that my gut was telling the truth was greater than anything I've felt before.
Although I wouldn't have processed that at that time.
And my hope that my gut was wrong after all kept me hanging in there. Waiting for him to babble, waiting for him to speak his first word.
I am embarrassed to admit that I don't recall his first word, or when he spoke it. I'm certain I wrote it down somewhere. I am truly angry with myself that I don't remember.
How could I not remember this crucial moment when it seemed all I was waiting for was that first word? For the longest time?
By the time he turned two in June 2010, he had probably 8-10 words, although I would have to check this against his memory book.
He was starting nursery school in September 2010, and I thought let's wait until he was in school for a couple of months to see if his speech improved.
I thought because he would be around a lot of other little kids, in a somewhat structured setting, that his language would take off. And if it didn't, then it would be obvious there was a real problem.
In late October 2010, the pediatrician was still not concerned with his development.
Thankfully, I found out we could "self-refer" to the county's Early Intervention Program.
That was the beginning of learning about this process which I am continuing to learn how to navigate.
Learning the process, the cast of characters, the policies, your and your child's rights, and figuring out what options you have for your child can be overwhelming for anybody.
Less than 2 weeks after I made the initial call, the process started for us.
Even though it was I who had initiated the process, I was very defensive during the intake meeting with the Service Coordinator, whom I later came to know as a great Service Coordinator.
Then there was an initial evaluation at our home. The evaluation was provided by Easter Seals.
Easter Seals? I remember getting getting floral stamps from them when I was a kid back in the 70's. What do they have to do with any of this?
From easterseals.com: Easter Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.
If you are beginning this process, you'll see that there are a lot of contracted services going through the county.
You'll see lots of different people coming and going, in and out of your house, intruding upon your space, and judging your child.
It hurts. It's necessary. Don't take it personally.
I wish I'd known that back then.
Especially when the evaluation report came back and they said:
Your son is eligible for early intervention services and we recommend that he be seen by a developmental pediatrician to assess for autism.
Autism?
I do recall questioning some things even when he was an infant. He was such a quiet baby. He rarely cried. He didn't babble. He was just. so. good.
Had I gone with my gut feeling that something was developmentally wrong with my son, I probably would have started the process of getting him the support he needs when he was around 10 months old.
But hindsight is 20/20.
And everyone assured me he was fine and that was fine with me.
He's the youngest of three children - his older sisters are talking for him.
He's a boy and boys develop more slowly than girls.
You are a good parent and good at anticipating his needs, so he doesn't need to talk.
He's just a really good baby - just you wait, before you know it he'll be talking your ear off and you'll wonder why you ever wanted him to talk!
Friends. Friends with children with developmental delays and other special needs. Family. The pediatrician.
I do not place blame. I was fine with these words of reassurance because my fear of finding out that my gut was telling the truth was greater than anything I've felt before.
Although I wouldn't have processed that at that time.
And my hope that my gut was wrong after all kept me hanging in there. Waiting for him to babble, waiting for him to speak his first word.
I am embarrassed to admit that I don't recall his first word, or when he spoke it. I'm certain I wrote it down somewhere. I am truly angry with myself that I don't remember.
How could I not remember this crucial moment when it seemed all I was waiting for was that first word? For the longest time?
By the time he turned two in June 2010, he had probably 8-10 words, although I would have to check this against his memory book.
He was starting nursery school in September 2010, and I thought let's wait until he was in school for a couple of months to see if his speech improved.
I thought because he would be around a lot of other little kids, in a somewhat structured setting, that his language would take off. And if it didn't, then it would be obvious there was a real problem.
In late October 2010, the pediatrician was still not concerned with his development.
Thankfully, I found out we could "self-refer" to the county's Early Intervention Program.
That was the beginning of learning about this process which I am continuing to learn how to navigate.
Learning the process, the cast of characters, the policies, your and your child's rights, and figuring out what options you have for your child can be overwhelming for anybody.
Less than 2 weeks after I made the initial call, the process started for us.
Even though it was I who had initiated the process, I was very defensive during the intake meeting with the Service Coordinator, whom I later came to know as a great Service Coordinator.
Then there was an initial evaluation at our home. The evaluation was provided by Easter Seals.
Easter Seals? I remember getting getting floral stamps from them when I was a kid back in the 70's. What do they have to do with any of this?
From easterseals.com: Easter Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.
If you are beginning this process, you'll see that there are a lot of contracted services going through the county.
You'll see lots of different people coming and going, in and out of your house, intruding upon your space, and judging your child.
It hurts. It's necessary. Don't take it personally.
I wish I'd known that back then.
Especially when the evaluation report came back and they said:
Your son is eligible for early intervention services and we recommend that he be seen by a developmental pediatrician to assess for autism.
Autism?
Tuesday, June 14, 2011
A rose by any other name
I wish I had started this blog sooner. I am the type of person who does well thinking chronologically. Trying to go back in time to recreate the past couple of months, let alone the past year or more, is daunting.
Please bear with me as I write more about the present before I am able to delve into the past. I know the background knowledge will be helpful. I know for parents who are scouring the internet for any bit of information to help them try and figure out whether their child may be autistic or not, the early information will be helpful.
Since the diagnosis, I have struggled with my son being labeled. I struggle with knowing that some people will see him as only his diagnosis. Define him by autism. Limit him. Will he be teased? Excluded? Discriminated against? Stigmatized?
I don't want that for him.
I have struggled with my own preconceived notions of autism. How can my child have autism? Look at everything he CAN do. Look at his eye contact. Look, he IS social. He responds to his name. He follows directions. He knows his family members. He doesn't line things up. He doesn't flap his arms or spin around. He doesn't bang his head on the wall.
Yes, he walks on his tippy-toes occasionally, but doesn't every toddler? And yes, he has an affinity for cars, but so do a lot of other boys.
Our son's symptoms are mild. He was diagnosed at 2 years and 10 months of age. His symptoms could get worse. His symptoms could get better. Would he then still carry the label for life?
In the end, a label is just a label. It doesn't change who my son is. It doesn't change his sense of humor, his bright smiles, his endless energy. It doesn't change the warmth of his hugs, the softness of his cheeks, the twinkle in his eyes. It doesn't change how smart he is, how clever he is, how stinkin' cute he is.
Autism does not define him.
Shakespeare wrote, "What's in a name? that which we call a rose by any other name would smell as sweet."
My little guy is still my little guy. The same little guy he was before April 26, 2011.
Please bear with me as I write more about the present before I am able to delve into the past. I know the background knowledge will be helpful. I know for parents who are scouring the internet for any bit of information to help them try and figure out whether their child may be autistic or not, the early information will be helpful.
Since the diagnosis, I have struggled with my son being labeled. I struggle with knowing that some people will see him as only his diagnosis. Define him by autism. Limit him. Will he be teased? Excluded? Discriminated against? Stigmatized?
I don't want that for him.
I have struggled with my own preconceived notions of autism. How can my child have autism? Look at everything he CAN do. Look at his eye contact. Look, he IS social. He responds to his name. He follows directions. He knows his family members. He doesn't line things up. He doesn't flap his arms or spin around. He doesn't bang his head on the wall.
Yes, he walks on his tippy-toes occasionally, but doesn't every toddler? And yes, he has an affinity for cars, but so do a lot of other boys.
Our son's symptoms are mild. He was diagnosed at 2 years and 10 months of age. His symptoms could get worse. His symptoms could get better. Would he then still carry the label for life?
In the end, a label is just a label. It doesn't change who my son is. It doesn't change his sense of humor, his bright smiles, his endless energy. It doesn't change the warmth of his hugs, the softness of his cheeks, the twinkle in his eyes. It doesn't change how smart he is, how clever he is, how stinkin' cute he is.
Autism does not define him.
Shakespeare wrote, "What's in a name? that which we call a rose by any other name would smell as sweet."
My little guy is still my little guy. The same little guy he was before April 26, 2011.
Monday, June 13, 2011
The truth of the matter
I was not completely open when I said I didn't know what this blog would be about.
When that buzzing bee was getting louder, it was because I knew subconsciously that the blog would be about my son.
It's taken me several days since I started this blog, but now I'm ready to tell. Conversations with my husband and a dear, trusted friend have helped me decide that it's ok. It is ok.
My son was diagnosed with Autism Spectrum Disorder (ASD) - or, simply, "autism" - on April 26, 2011. That day was one of the saddest days either my husband or I had ever experienced in our lives.
Only a handful of people know this. We have not even told our families. It has been too awkward and painful to share the news.
Seriously, how does one share news like this? "Hey there - guess what? Our little guy has autism! Yeah!"
We have gone through our stages of shock, denial, loss, and confusion. We are on our way to acceptance and hope. Often the feelings are simultaneous.
This is not a stop we requested on our journey as parents nor what we wished for our son. And we believe God gives us only what we can handle.
But He's starting to push the envelope.
When that buzzing bee was getting louder, it was because I knew subconsciously that the blog would be about my son.
It's taken me several days since I started this blog, but now I'm ready to tell. Conversations with my husband and a dear, trusted friend have helped me decide that it's ok. It is ok.
My son was diagnosed with Autism Spectrum Disorder (ASD) - or, simply, "autism" - on April 26, 2011. That day was one of the saddest days either my husband or I had ever experienced in our lives.
Only a handful of people know this. We have not even told our families. It has been too awkward and painful to share the news.
Seriously, how does one share news like this? "Hey there - guess what? Our little guy has autism! Yeah!"
We have gone through our stages of shock, denial, loss, and confusion. We are on our way to acceptance and hope. Often the feelings are simultaneous.
This is not a stop we requested on our journey as parents nor what we wished for our son. And we believe God gives us only what we can handle.
But He's starting to push the envelope.
Saturday, June 11, 2011
I'm a sucker for anything "bee"
I came to post about my cute purchase and then I realized that my first post talked about me having a bee in my bonnet. My husband says this to me all the time and maybe that's why I have an affection for all things "bee". Because then... wait... my graphic motif of choice for this blog is - guess what? A bee!
Maybe that's what my blog is destined to be. All About Bees. Hmm.
Anyway, about my cute purchase.
The mailman delivered the latest sur la table catalog and as I thumbed through it, I saw the cutest beverage jar in the shape of a beehive and it was on sale! And then it got even better - there was a matching stand with a bee on it.
I started having dreams of throwing a summer brunch on the patio, with a light honey-champagne cocktail (if there is such a thing, and if there isn't, I'll make up my own concoction).
Lucky for me, there is a sur la table store just a few miles away so I called, they took my order (lest they sell out because they were on sale and they are so cute - who wouldn't buy them on sight??), and I picked it up.
Would that be considered impulse shopping?
Maybe that's what my blog is destined to be. All About Bees. Hmm.
Anyway, about my cute purchase.
The mailman delivered the latest sur la table catalog and as I thumbed through it, I saw the cutest beverage jar in the shape of a beehive and it was on sale! And then it got even better - there was a matching stand with a bee on it.
I started having dreams of throwing a summer brunch on the patio, with a light honey-champagne cocktail (if there is such a thing, and if there isn't, I'll make up my own concoction).
Lucky for me, there is a sur la table store just a few miles away so I called, they took my order (lest they sell out because they were on sale and they are so cute - who wouldn't buy them on sight??), and I picked it up.
Would that be considered impulse shopping?
Friday, June 10, 2011
Bee in my bonnet
For the past few years, I've toyed with the idea of starting a blog but I could never figure out what it would be about. I also couldn't get past the very real fact that I am a private person. How does a private person have a blog for pete's sake?
Then, as with many of my "great ideas", the thought would disappear as quickly as it came.
Fast forward to a few days ago when that bee in my bonnet started buzzing louder and didn't stop.
Well, I still don't quite know what the blog will be about other than whatever happens to be on my mind for any given day. I probably won't talk about religion, politics, or money, because I was brought up that way and it gives me the heebie-jeebies when people start talking about those topics (family and the closest of friends excepted).
And the private person v. blogger part? Let's just say I'm not ready to go full frontal yet.
Then, as with many of my "great ideas", the thought would disappear as quickly as it came.
Fast forward to a few days ago when that bee in my bonnet started buzzing louder and didn't stop.
Well, I still don't quite know what the blog will be about other than whatever happens to be on my mind for any given day. I probably won't talk about religion, politics, or money, because I was brought up that way and it gives me the heebie-jeebies when people start talking about those topics (family and the closest of friends excepted).
And the private person v. blogger part? Let's just say I'm not ready to go full frontal yet.
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