In case you ever have to know:
ASD : Autism Spectrum Disorder (which contains five variations)
PDD: Pervasive Developmental Disorder (which is one of the variations in the Austism Spectrum; often called "Autism.")
PDD-NOS: Pervasive Developmental Disorder-Not Otherwise Specified (this is a subgroup of PDD, and means that the child does not qualify for the full diagnosis of autism, but the child is autistic-like, and still falls somewhere in the autism spectrum because they exhibit some of the symptoms)
ECI: Early Childhood Intervention (State agency authorized to support families with children with disabilities or developmental delays. This program help kids from birth to three years of age. ECI Program for Texas)
PPCD: Preschool Program for Children with Disabilites (this is a program offered through the school district that helps kids with disabilities from 3-5 years old. Cy-Fair ISD Special Education Services)
ABR Test: Auditory Brainstem Response (hearing test that is conducted while your child is sedated.)
This isn't even the tip of the iceberg. It's at least 100 miles away from the tip of the iceberg.
Thursday, September 9, 2010
The 2 Year Checkup
Delyn just turned two at the end of July, so he was due anyway for his 2nd year wellness visit, plus he was due to get his immunizations. His speech delay has been on my mind for a while. Probably at least for the last six months. I kept telling myself that all kids are different, and I tried really hard to not worry about it too much. Being a single mom who works a full time job, there are lot of opportunities for worry, believe me, and I tried to just keep that particular one pushed aside.
My sister took me out for a couple of beers while my parents had Delyn out of the state for a visit with his Great Grandmother. We were having a really good time and then she got kind of quiet and said she needed to talk to me about something. That moment right there was probably the scariest part of the conversation! She told me that she, too, was concerned about Delyn's speech delay, and that she had noticed some other signs of Autistic behavior. Everything she described I agreed with. However, those were all things that I had attributed to Delyn's "quirkiness." I went home and did some research online, and found that she was right. I made an appointment for him, and took him in.
After assessing his general health (Delyn had a super bad case of ecxema, and we just couldn't get it to go away. Other than that, he's healthy!), the doc had me fill out something called an M-CHAT™ (Modified Checklist for Autism in Toddlers), which Delyn pretty much failed. It's a yes/no checklist with questions like have you ever thought your child was deaf, does he consistently answer to his name, does he pretend play, does he point at objects, etc. Right away the doc started telling me all of these things that I needed to start doing. I needed to make him an appointment to get his hearing checked, I needed to contact a facility to schedule an appointment to get him screened for diagnosis, I needed to call the school district to enroll him in a program...It was completely overwhelming. Plus, while she's telling me all of this, my mind is wandering. What caused this? Did I do something during my pregnancy to cause it? Had I not been a good mother to him? Is he going to have to go to a special school away from "normal" kids? Is he mentally retarded? I thought I was prepared for her to confirm my sister's suspicions, but I wasn't prepared for the emotional overload that occured right there in the office. My brain started reaching for instances where Delyn HAD behaved in an appropriate manner, and I started to get a little defensive. I apologized to the doc, and tried to start paying attention to all of the information she gave me. Lucky for me, she wrote down names and numbers to start calling as soon as I got home.
After we got home, I had to repeat everything to my parents, which was hard. But, I'm a naturally optimistic person, and I tried really hard to keep that attitude. Early diagnosis and treatment is key for children diagnosed with Autism. The earlier, the better. I found some solace in knowing that a large percentage of kids diagnosed at an early age, and receive treatment, grow up just fine and are able to function as any other child would.
So, the hearing appointment was set, and I also spoke with the people at the Childrens Learning Institute and scheduled an appointment to have him screened. Once they can diagnose him, they'll be able to point us in the right direction and tell us what to do next. Right now, it's a lot of reading and waiting.
My sister took me out for a couple of beers while my parents had Delyn out of the state for a visit with his Great Grandmother. We were having a really good time and then she got kind of quiet and said she needed to talk to me about something. That moment right there was probably the scariest part of the conversation! She told me that she, too, was concerned about Delyn's speech delay, and that she had noticed some other signs of Autistic behavior. Everything she described I agreed with. However, those were all things that I had attributed to Delyn's "quirkiness." I went home and did some research online, and found that she was right. I made an appointment for him, and took him in.
After assessing his general health (Delyn had a super bad case of ecxema, and we just couldn't get it to go away. Other than that, he's healthy!), the doc had me fill out something called an M-CHAT™ (Modified Checklist for Autism in Toddlers), which Delyn pretty much failed. It's a yes/no checklist with questions like have you ever thought your child was deaf, does he consistently answer to his name, does he pretend play, does he point at objects, etc. Right away the doc started telling me all of these things that I needed to start doing. I needed to make him an appointment to get his hearing checked, I needed to contact a facility to schedule an appointment to get him screened for diagnosis, I needed to call the school district to enroll him in a program...It was completely overwhelming. Plus, while she's telling me all of this, my mind is wandering. What caused this? Did I do something during my pregnancy to cause it? Had I not been a good mother to him? Is he going to have to go to a special school away from "normal" kids? Is he mentally retarded? I thought I was prepared for her to confirm my sister's suspicions, but I wasn't prepared for the emotional overload that occured right there in the office. My brain started reaching for instances where Delyn HAD behaved in an appropriate manner, and I started to get a little defensive. I apologized to the doc, and tried to start paying attention to all of the information she gave me. Lucky for me, she wrote down names and numbers to start calling as soon as I got home.
After we got home, I had to repeat everything to my parents, which was hard. But, I'm a naturally optimistic person, and I tried really hard to keep that attitude. Early diagnosis and treatment is key for children diagnosed with Autism. The earlier, the better. I found some solace in knowing that a large percentage of kids diagnosed at an early age, and receive treatment, grow up just fine and are able to function as any other child would.
So, the hearing appointment was set, and I also spoke with the people at the Childrens Learning Institute and scheduled an appointment to have him screened. Once they can diagnose him, they'll be able to point us in the right direction and tell us what to do next. Right now, it's a lot of reading and waiting.
Life Isn't Always What You Expect
Two years ago I gave birth to the greatest kid in the world. Having Delyn changed my life. He's a happy little kid, and has the love and adoration of family members, and friends close enough to be family members! A few weeks ago, my sister brought it to my attention that Delyn was showing some signs of Autism. Still not speaking at two years of age, he also was demonstrating some "quirks" that happened to show up on the generic "Austism Symptom Checklist" that I found online. We had a pediatrician appointment (a new doc, since I didn't really care for his last doctor) last week, and the doctor shared in my concerns. I decided to start this blog for a few reasons, the main one being that I wanted a way to chronicle our experience through the testing, the waiting, the eventual diagnosis, and treatment. I also think this is a great way to keep family and friends informed of Delyn's progess. It's an overwhelming feeling sometimes to feel like you have to call everyone after every doc appointment and repeat yourself over and over. I have no idea what Delyn's prognosis is going to be. So far the most frustrating part of this procedure is that I find myself completely ignorant of Austism Spectrum Disorder. If I record our experience, maybe someday another Mother will find herself in the same position, and find this blog and realize that if we can get through it, they can too.
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