We had our screening appointment with ECI today, and everything went well! They came out to the apartment, and basically this first appointment was just a question/answer session, and was spent filling out paperwork. I was so glad that I had done my homework, because when she started talking about PPCD and things like that I totally knew what she was talking about. That saved a little bit of time, and I was able to ask her some questions. She did see some positives with Delyn, and that really lifted my spirits. When she walked into the apartment, of course he did his whole "bashful" thing. However, the rep looked at me and said, "He realizes that I'm here, that's a good thing!" She also saw significant eye contact, which is a great sign as well. But, we're not out of the woods yet.
We are still keeping the appointment at the Duncan Center next week because I would really feel better with an actual diagnosis, which ECI does not provide, by the way. We have a second appointment with ECI for the end of October, for him to actually be assessed. During that visit, they'll ask a lot of questions of me, and see how Delyn plays and does things. Then, they'll write a "plan" for him to help him get on track. ECI seems to be very focused on not only working with the child, but also working with parents and caregivers to ensure that teaching moments are not ignored, and coaching us on how to better help Delyn learn.
So, we seem to be staying on the right track! Delyn is still a happy kid, as usual. He has actually started making more "conversation" type sounds, which I'm choosing to view as a good thing. :) One week till our major appointement. So, this time next week I'll have a much clearer view of what needs to happen.
Tuesday, September 28, 2010
Friday, September 17, 2010
ECI Appointment!
A rep from ECI just called, and they already received the referral from the Audiologist! We have an appointment scheduled for September 28. The first appointment is just for an evaluation, and to learn whether we qualify for ECI services. The cool thing is that they come out to your house to evaluate your child. That's better for everyone involved, I think! We're still keeping our appointment at CLI in October, but we're going to go ahead and get started with any speech therapy he needs. Today has been a pretty good day, even though I had a flat and it screwed my schedule up!
Thursday, September 16, 2010
Testing Today
Delyn had the ABR test today, and everything came back great. So, no hearing loss. That's good news. Now we've ruled out a reason for his speech delay, and we can move on to his evaluation on October 5. For anyone who has to schedule their little one for this test, it was really pretty stress-free.
Delyn HATES doctors. He doesn't like anything about it. So, I was feeling pretty stressed out before we went, knowing that not only were they going to have to assess him before the test, but we were going to have to give him a sedative and get him to go to sleep (and stay asleep) for the actual test.
They asked that he be brought in as drowsy as possible, so I kept him up as late as I could last night, which was 1:30am. I woke him up at 8:15am, changed his diaper, put on his elmo slippers, and we left for the appointment. They saw us pretty much right away, and they had to look in his ears and weigh him and stuff. That was the bad part. Delyn hated it, and screamed and cried the whole time. They administered the sedative via syringe, and that was pretty traumatic as well. BUT, he took all of the medicine, and settled down pretty quickly. They left us alone in the darkened room, and I rocked him and walked around with him until he fell asleep, which took about 30 minutes. Once he was asleep, the audiologist connected three electrodes to his head (one on his forehead, and one behind each ear), and put teeny tiny headphones in each ear. He conducted the test, and everything was great. We woke Delyn up, and he was awake long enough for me to put him in the stroller, then he was fast asleep again. He slept all the way home, and then slept for three more hours after we got home!
The Audiologist was really nice (and he happens to be married to a speech therapist!), and said that he was going to put in a referral for us for ECI. I let him know that we had an appointment at the Childrens Learning Institute in October, and he thought that was a great idea. I'm so glad I had done some research before we went, because I was able to undertand what he was talking about!
So, we know he can hear. Now, we can move one step closer to getting him the help that he needs.
Delyn HATES doctors. He doesn't like anything about it. So, I was feeling pretty stressed out before we went, knowing that not only were they going to have to assess him before the test, but we were going to have to give him a sedative and get him to go to sleep (and stay asleep) for the actual test.
They asked that he be brought in as drowsy as possible, so I kept him up as late as I could last night, which was 1:30am. I woke him up at 8:15am, changed his diaper, put on his elmo slippers, and we left for the appointment. They saw us pretty much right away, and they had to look in his ears and weigh him and stuff. That was the bad part. Delyn hated it, and screamed and cried the whole time. They administered the sedative via syringe, and that was pretty traumatic as well. BUT, he took all of the medicine, and settled down pretty quickly. They left us alone in the darkened room, and I rocked him and walked around with him until he fell asleep, which took about 30 minutes. Once he was asleep, the audiologist connected three electrodes to his head (one on his forehead, and one behind each ear), and put teeny tiny headphones in each ear. He conducted the test, and everything was great. We woke Delyn up, and he was awake long enough for me to put him in the stroller, then he was fast asleep again. He slept all the way home, and then slept for three more hours after we got home!
The Audiologist was really nice (and he happens to be married to a speech therapist!), and said that he was going to put in a referral for us for ECI. I let him know that we had an appointment at the Childrens Learning Institute in October, and he thought that was a great idea. I'm so glad I had done some research before we went, because I was able to undertand what he was talking about!
So, we know he can hear. Now, we can move one step closer to getting him the help that he needs.
Friday, September 10, 2010
Friday Night!
Our storytimes are going well! We read for about 20-25 minutes each night right before his bedtime. He has really taken to it, and sits next to me on the couch while I read. He's good until around the 15 minute mark, and then he wants to flip the pages himself. :) His new thing now is watching our recording of Nickelodeon's Mega Music Fest that was on this past Monday. It was really cute. His favorite songs are Wyclef Jean and Dora's "La Bamba" duet (we dance together during that one!), and the song from Team Umizoomi called "Snack Patterns." He dances and laughs and screams when those come on. Nothing makes you feel better than watching your kid have such a good time, and knowing that he wants you right there with him joining in the fun. When he turns 16, I'm guessing that won't happen anymore, huh? Ha!
So our appointment for his ABR Test was moved up, and I'm so relieved. If they can't get any results from this test (meaning if the sedative doesn't work for him and he doesn't go to sleep), we'll have to schedule another test. The next one has to be done in the Operating Room, and Delyn will have to be put under. I'm keeping my fingers crossed that this test on Thursday is successful. I'll post as soon as I can after the testing is complete! I'm reading some pretty good books dealing with the subject of Autism, so I'll post those titles in the next couple of days. I've also found some really informative websites. Everyone have a great weekend!
Testing Moved Up!
There was a cancellation, so Delyn now has his appointment for his ABR Test this Thursday! YAY!! I really wanted all of the hearing questions answered before he was further evaluated. This is good news!
Thursday, September 9, 2010
Hearing Test Today
The results from D's hearing test were mixed. Delyn HATES doctors. He is a little bit partial to female doctors, but even they have a hard time looking in his ears, listening to his heart, etc. At one point, it took the doc, two nurses, and myself to hold him down and keep his head still so the doc could look into his ears to make sure there was no fluid, etc.
The hearing test took place in this booth-like room. There were speakers in each corner, and there were little light boxes that contained a toy in each corner as well. When there were certain noises, the box lit up and the toy rattled and made a noise. I sat in the booth with Delyn in my lap while the nurse administering the test worked the controls and monitored how Delyn noticed the noises. The times when the box lit up, he turned and looked towards the sound. However, there were other times (it seemed to be at low frequencies, but what the hell do I know), where Delyn didn't react at all. Does this mean he has a hearing problem? Hell if I know. The results came back as "iffy", and so we scheudled an ABR. Delyn wasn't very cooperative during the test. He kept wanting to get down, and he was very squirmy. D doesn't like to be contained. :) From what I'm reading online, this test is very reliable in children with development delays, and at least we'll know for sure afterwards if a hearing problem may be at the root of D's problems. One drawback to this test is that they have to sedate the child. I've been instructed to keep him up late the night before, and try to bring him in very tired so he'll have an easier time. I'm still not sure how the technology works in order for them to test his hearing while he's asleep, so I'll have to research that a little more.
The earliest opening they had was in late October. I had hoped to have a final decision on his hearing before our appointment at CLI, but that's the way it goes, I guess!
The hearing test took place in this booth-like room. There were speakers in each corner, and there were little light boxes that contained a toy in each corner as well. When there were certain noises, the box lit up and the toy rattled and made a noise. I sat in the booth with Delyn in my lap while the nurse administering the test worked the controls and monitored how Delyn noticed the noises. The times when the box lit up, he turned and looked towards the sound. However, there were other times (it seemed to be at low frequencies, but what the hell do I know), where Delyn didn't react at all. Does this mean he has a hearing problem? Hell if I know. The results came back as "iffy", and so we scheudled an ABR. Delyn wasn't very cooperative during the test. He kept wanting to get down, and he was very squirmy. D doesn't like to be contained. :) From what I'm reading online, this test is very reliable in children with development delays, and at least we'll know for sure afterwards if a hearing problem may be at the root of D's problems. One drawback to this test is that they have to sedate the child. I've been instructed to keep him up late the night before, and try to bring him in very tired so he'll have an easier time. I'm still not sure how the technology works in order for them to test his hearing while he's asleep, so I'll have to research that a little more.
The earliest opening they had was in late October. I had hoped to have a final decision on his hearing before our appointment at CLI, but that's the way it goes, I guess!
Acronym Overdose
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.
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.
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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