Here is what I have found that is amazing say the least.
Statistical information so you can understand the magnitude of this diagnosis related to other diagnosis.
1 - 110 children will be diagnosed with ADS (Autism Spectrum Disorder) - Boys are 4x more likely to be diagnosed than Girls (so my little Abbie is in the minority and rare)
More children will be diagnosed with ADS or Autism this year than Pediatric aids, juvenile diabetes or childhood cancers combined! - This is extordanary
THERE IS NO CURE
COST: is 35 BILLION - that"s right 35,000,000,000 - Can you wrap your mind around that!!!!
Autism - affect 1-110 Funding 79 Million
Lets look at others to get a perspective why don't we.
Leukemia - affects 1 - 1,200 Funding 277 Million
Muscular Dystrophy - affects 1 - 100,000 Funding 162 Million
Pediatric AIDS - affects 1-300 Funding 394 Million
Juvenile Diabetes - affects 1-500 Funding 156 Million
2010 Budget of the National institute for Health - Funding for research 35.6 Billion - Only 218 Million when to Autism Research = .6% of total funding
I understand the need for all these, I have and most like will continue to support some of the causes if I have any thing left over after we provide for Abbie, but this is ridiculous. And to be perfectly honest, if it didn't effect us I would most likely not know this information right now.
So please understand that there is so much that goes into this Diagnosis!
Sunday, November 20, 2011
Autism Treatments
Once I got over the initial shock of the diagnosis, it was time for me to get to know this beast - AUTISM.
To much is out there regarding autism from very mild to very extreme. It is very hard to weed through the stuff to get the right information. There are so many books, materials, ect out there on how to treat Autism. As I mention earlier there is no real treatment plan, it's just what works for your child. The problem with this type of approach is you have to weed through the crap to get to the good stuff.
The one standard of care that everyone seems to believe is true: is the amount of treatment that needs to be done, and the earlier the intervention the better for the child. What is that standard of care at least 25 hours of intensive therapy, by Speech, OT, ABA (applied behavior analysis), feeding (if needed), play groups with peer groups, home therapy, play therapy, music therapy, preschool, ect. This can be overwhelming I know cause I am smack in the middle of it.
The Cost is NO JOKE! Its a wonder why parents just can't do this, and that so many children do not get what is needed because the cost is so high, and there is not a lot funding out there for Autism.
To much is out there regarding autism from very mild to very extreme. It is very hard to weed through the stuff to get the right information. There are so many books, materials, ect out there on how to treat Autism. As I mention earlier there is no real treatment plan, it's just what works for your child. The problem with this type of approach is you have to weed through the crap to get to the good stuff.
The one standard of care that everyone seems to believe is true: is the amount of treatment that needs to be done, and the earlier the intervention the better for the child. What is that standard of care at least 25 hours of intensive therapy, by Speech, OT, ABA (applied behavior analysis), feeding (if needed), play groups with peer groups, home therapy, play therapy, music therapy, preschool, ect. This can be overwhelming I know cause I am smack in the middle of it.
The Cost is NO JOKE! Its a wonder why parents just can't do this, and that so many children do not get what is needed because the cost is so high, and there is not a lot funding out there for Autism.
Tuesday, November 15, 2011
Power of Friends who understand
After we received the diagnosis of Autism, we went on line and found the Autism Society of Middle Tennessee. They were so sweet and understanding. They sent us this packet to let us know about all the resources that are out there and available for Abbie. They also have educational programs that have any thing to do with Autism. Plus they send out this resource "The First Hundred days after diagnosis". It was so very informative and needed. What a great resource.
While I was talking to the lady at the ASMT, she told me about this group on Facebook. This group is a play group for children on the spectrum, in our area. I was interested and decided I wanted to know more. I contacted the person in charge of the group and was invited to be a part of the group. Its a closed group, it's great because you can ask and put feelings down and not have to worry if other people can see. And, through this group, I have met some very strong moms and dads that deal with the same things I am dealing with, some more extreme then others but still. What is even better is the resources, the understand, the advise, and the words of encouragement.
I didn't realize how much I would appreciate this group until just recently when the moms got together and had a great time just being moms, not talking to death about Autism but just being. They understand there is a time to talk and there is a time to just let go, even for just a few moments.
Its just they understand and there is no judging going on when I voice a concern or need. Its just great, and has been a life savior to me and my family. I have learned so much from different therapies, to how to deal with the school system, ect. The wealth of information from those who understand its a powerful thing.
While I was talking to the lady at the ASMT, she told me about this group on Facebook. This group is a play group for children on the spectrum, in our area. I was interested and decided I wanted to know more. I contacted the person in charge of the group and was invited to be a part of the group. Its a closed group, it's great because you can ask and put feelings down and not have to worry if other people can see. And, through this group, I have met some very strong moms and dads that deal with the same things I am dealing with, some more extreme then others but still. What is even better is the resources, the understand, the advise, and the words of encouragement.
I didn't realize how much I would appreciate this group until just recently when the moms got together and had a great time just being moms, not talking to death about Autism but just being. They understand there is a time to talk and there is a time to just let go, even for just a few moments.
Its just they understand and there is no judging going on when I voice a concern or need. Its just great, and has been a life savior to me and my family. I have learned so much from different therapies, to how to deal with the school system, ect. The wealth of information from those who understand its a powerful thing.
Now What
Now we have the diagnosis. It confirms what is going on with Abbie and Now What. I didn't want to do anything to be honest! We just continued doing what we were already doing, which is about 15 hours of therapies a week. However, I didn't want to read, hear, or talk about the situation. I just couldn't. I gave myself a few months to adjust to the diagnosis and start working toward the healing process.
I do find that when you state your child has Autism, its hard for people to understand. Because the saying is "one child with Autism, is one child with Autism". The thing about Autism is that it effects each child differently. Its not like diabetes, childhood cancers, ect. All those have specific treatment plans, they know for example what to do if a child is diagnosed with a cancer, what treatments to give and what the prognosis may be, the child hopefully survives and moves on with their life.
However, with Autism - its NOT CLEAR. There is no set treatment, there is not set prognosis, there is no right or wrong way for therapies. This is mainly because each child is different, each child responds to therapies different, what works for one child may not work for another. There are standards though. They say a child with Autism should have at least 25 hours of therapies - either through group play, OT, Speech, ABA, ect. But is 25 hours enough, is it to much. WHAT - there is NO CURE. Your child may be able to cope and develop ways to interact with people and school but will always have to deal with Autism and the prejudiced that come with it.
Then you have the issues of dealing with people who don't understand what Autism is and treats your child differently. They JUDGE you because your child has a meltdown in the store, and they don't understand that your child maybe having a sensory issue or just doesn't understand the social aspects. They give you dirty looks and comments on how they would solve the problem. They treat you like you are bad parent and don't know how to discipline your child! Its crazy!
There is a friend I met who responds to this in a very interesting way. Instead of them confronting the individual and trying to explain the situation she had small business cards made out that said my child has Autism - and explains what that means. She just gives it to the person and walks away. At least now they understand and will stop making comments or rude looks. I think that is a great idea and I am so going to use this technique.
Now after several months to let myself adjust to the new diagnosis, I started reading, getting involved, and trying to understand what is best for Abbie. There is so much out there. You have to weed through the bad to glean the good information. So now, I find what is best for Abbie, so that she has positive and awesome experiences and learns and grows and becomes a productive and secure adult. But that is long way to go, she is only 2 3/4 old almost 3 and we have many moons to go!
I do find that when you state your child has Autism, its hard for people to understand. Because the saying is "one child with Autism, is one child with Autism". The thing about Autism is that it effects each child differently. Its not like diabetes, childhood cancers, ect. All those have specific treatment plans, they know for example what to do if a child is diagnosed with a cancer, what treatments to give and what the prognosis may be, the child hopefully survives and moves on with their life.
However, with Autism - its NOT CLEAR. There is no set treatment, there is not set prognosis, there is no right or wrong way for therapies. This is mainly because each child is different, each child responds to therapies different, what works for one child may not work for another. There are standards though. They say a child with Autism should have at least 25 hours of therapies - either through group play, OT, Speech, ABA, ect. But is 25 hours enough, is it to much. WHAT - there is NO CURE. Your child may be able to cope and develop ways to interact with people and school but will always have to deal with Autism and the prejudiced that come with it.
Then you have the issues of dealing with people who don't understand what Autism is and treats your child differently. They JUDGE you because your child has a meltdown in the store, and they don't understand that your child maybe having a sensory issue or just doesn't understand the social aspects. They give you dirty looks and comments on how they would solve the problem. They treat you like you are bad parent and don't know how to discipline your child! Its crazy!
There is a friend I met who responds to this in a very interesting way. Instead of them confronting the individual and trying to explain the situation she had small business cards made out that said my child has Autism - and explains what that means. She just gives it to the person and walks away. At least now they understand and will stop making comments or rude looks. I think that is a great idea and I am so going to use this technique.
Now after several months to let myself adjust to the new diagnosis, I started reading, getting involved, and trying to understand what is best for Abbie. There is so much out there. You have to weed through the bad to glean the good information. So now, I find what is best for Abbie, so that she has positive and awesome experiences and learns and grows and becomes a productive and secure adult. But that is long way to go, she is only 2 3/4 old almost 3 and we have many moons to go!
Monday, November 14, 2011
Autism Diagnosis
We decide to do the testing May 2011. We also got on the Vanderbilt waiting list for the Autism testing. We decide to go ahead and have the testing done through the WAVES program in Franklin, TN and TEIS supports the testing. So they had someone come to our home and asked us lots and lots of questions, then they watched Abbie play for about 30 minutes, then video taped her play for another 30-45 minutes, all the while asking us questions. Then the next week they had the the team go and observe Abbie at her developmental play group for three hours. After that we met with the team, an OT, Speech and Autism therapist and physiologist that specializes in Autism testing. We talk and they observe Abbie that was about an 2 hours session. Then we wait.
On May 11, 2011 - I will never forget the day. It was beautiful outside. Not to hot but it was May. We walk into the room to get the report what they found and what to do next. The director of the WAVES program was there and the Aimee Lyst PhD physiologist what specializes in Autism testing was there to give us the results. I knew something was up, when they had tissues on the table in front of us and they were not smiling.
She starts explaining the testing and what test they did (DAYC (Developmental Assessment of Young Children, ADOS (Autism Diganostic Observation Scale, and CARS (The childhood Autism Rating Scale) and explains why they do each test. Then they start with the results.
DAYC - test the standard score for her age is 80% she received 9% - Rating below average - tears start. They still are even as I write this, the tears are starting. Then they move on to the ADOS
ADOS - Here is what they said. "The ADOS consists of standard activites that allow the examiner to observe behaviors that have been identified as important to the diagnosis of autism spectrum disorders at developmental levels and chronological ages. Scores in the area of communication above 4 are considered in the autistic range and scores above 2 fall in the autism spectrum range. Abbie scores in the area of communication was a 7 which falls in the autism range. Scores in the Reciprocal Social Interaction area that are 7 and above are considered in the Autism range and scores that are 4 and above are in the autism spectrum range. Abbie's score in this area was a 12, which falls in the autism range. A total combined score of communication and social interactions of 12 or above is considered in the autistic range and scores between 7 -12 are considered in the autism spectrum range. Abbie overall total score was a 19, which falls in the autism range.
CARS - Here is what they said. " The CARS is a 15-item behavioral rating scale developed to identify children with autism spectrum disorders and to distinguish them from children with development delays other than autism. The CARS was administered via observation and parent report. Scores of 30 or above are categorized as "autistic". Abbie obtained a total score of 36.5, which fell in the autistic range.
With the testing complete - the recommendation for Abbie. Since does meet the diagnostic criteria for Autism 299.0.
Silence - tears rolling down my face - I can't respond - I can't hardly breath. I can't believe the information. I can't hear what they are saying - but I see them talking, talking about what to do next, how to move on with this dx, I can't hear them, I can't stop the tears, I just can't stop the tears.
On May 11, 2011 - I will never forget the day. It was beautiful outside. Not to hot but it was May. We walk into the room to get the report what they found and what to do next. The director of the WAVES program was there and the Aimee Lyst PhD physiologist what specializes in Autism testing was there to give us the results. I knew something was up, when they had tissues on the table in front of us and they were not smiling.
She starts explaining the testing and what test they did (DAYC (Developmental Assessment of Young Children, ADOS (Autism Diganostic Observation Scale, and CARS (The childhood Autism Rating Scale) and explains why they do each test. Then they start with the results.
DAYC - test the standard score for her age is 80% she received 9% - Rating below average - tears start. They still are even as I write this, the tears are starting. Then they move on to the ADOS
ADOS - Here is what they said. "The ADOS consists of standard activites that allow the examiner to observe behaviors that have been identified as important to the diagnosis of autism spectrum disorders at developmental levels and chronological ages. Scores in the area of communication above 4 are considered in the autistic range and scores above 2 fall in the autism spectrum range. Abbie scores in the area of communication was a 7 which falls in the autism range. Scores in the Reciprocal Social Interaction area that are 7 and above are considered in the Autism range and scores that are 4 and above are in the autism spectrum range. Abbie's score in this area was a 12, which falls in the autism range. A total combined score of communication and social interactions of 12 or above is considered in the autistic range and scores between 7 -12 are considered in the autism spectrum range. Abbie overall total score was a 19, which falls in the autism range.
CARS - Here is what they said. " The CARS is a 15-item behavioral rating scale developed to identify children with autism spectrum disorders and to distinguish them from children with development delays other than autism. The CARS was administered via observation and parent report. Scores of 30 or above are categorized as "autistic". Abbie obtained a total score of 36.5, which fell in the autistic range.
With the testing complete - the recommendation for Abbie. Since does meet the diagnostic criteria for Autism 299.0.
Silence - tears rolling down my face - I can't respond - I can't hardly breath. I can't believe the information. I can't hear what they are saying - but I see them talking, talking about what to do next, how to move on with this dx, I can't hear them, I can't stop the tears, I just can't stop the tears.
Fighting it will all cost
So, Abbie is growing, learning, and is still delayed at her 2 year evaluation with TEIS. They recommend that we start going to the 2yr old development play group two days a week for three hours, on top of starting Speech and OT 2hr x 2 days a week, and have an in home therapist once a week for development and family training on how to play and grow. So we do, I say lets do it, let get her what she needs so she will be ready for preschool when she is three!
Then we start our development play group. She walks in and doesn't even look at anyone, goes straight to a puzzle and plays with that toy for a moment then moves on. Mouthing everything. Doesn't even look at me (but she really wasn't giving us eye contact at all anyway). I leave her and she doesn't even know I left.
I thought at the time we may have been experiencing attachment disorder - which sometimes happens with adopted children. So we spent everyday working on holding, eye contact, and responding to her name. Little did I know it was not attachment disorder.
So we go every week, making some progress but not major ones. My husband starts doing research and starts to see some signs that Abbie may not be developmentally delayed but something else. I say no she just needs more time, she will get it, it will click you just wait and see. The therapies say there may be more to this, I say no give her more time, I know she will come out of it you just wait and see. For 6 months she makes small strides but no major progress. Then it happens. The program that Abbie attends for the development play group asked if we would consider testing her for Autism. They say she shows all the signs, no eye contact, doesn't respond to her name, doesn't interact with the other children, doesn't focus on one thing for a long or even short period of time, is not talking or even do with other children are doing. She wants to be isolated and play by her self, and she has sensory issues with food and other items. I said No your wrong, there is nothing wrong with her she is perfect little girl she laughs, she plays so what that she doesn't play with others maybe she just shy, she is just delayed she was when we got her and she is till trying to catch up.
You don't know what it feels like when someone tell you that your child may have Autism and should be tested. She was 2 1/2 at the time. The denial, grief not for me but for her, the not understanding because of all the nonsense that is out there about Autism, and being scared.
Cried for days, My husband already knew we would be going down this road he saw the signs, I did not want to see it, did not want to do the test, I just kept saying she will snap out of it, you will see just wait. But my loving husband and dad, said "honey, we have waited - its time now - its time so we can do everything humanly possible for Abbie if she does have Autism and get the treatments started now so she can be successful in life, its all right your a great mom, you love her and she knows and one day she will tell you, but lets do this, it can't hurt and only help." And I CRIED, CRIED and CRIED! The fighting is over, I give into the fact that we do the testing and wait and see what happens, maybe she really is just delayed. That was June 2011
Then we start our development play group. She walks in and doesn't even look at anyone, goes straight to a puzzle and plays with that toy for a moment then moves on. Mouthing everything. Doesn't even look at me (but she really wasn't giving us eye contact at all anyway). I leave her and she doesn't even know I left.
I thought at the time we may have been experiencing attachment disorder - which sometimes happens with adopted children. So we spent everyday working on holding, eye contact, and responding to her name. Little did I know it was not attachment disorder.
So we go every week, making some progress but not major ones. My husband starts doing research and starts to see some signs that Abbie may not be developmentally delayed but something else. I say no she just needs more time, she will get it, it will click you just wait and see. The therapies say there may be more to this, I say no give her more time, I know she will come out of it you just wait and see. For 6 months she makes small strides but no major progress. Then it happens. The program that Abbie attends for the development play group asked if we would consider testing her for Autism. They say she shows all the signs, no eye contact, doesn't respond to her name, doesn't interact with the other children, doesn't focus on one thing for a long or even short period of time, is not talking or even do with other children are doing. She wants to be isolated and play by her self, and she has sensory issues with food and other items. I said No your wrong, there is nothing wrong with her she is perfect little girl she laughs, she plays so what that she doesn't play with others maybe she just shy, she is just delayed she was when we got her and she is till trying to catch up.
You don't know what it feels like when someone tell you that your child may have Autism and should be tested. She was 2 1/2 at the time. The denial, grief not for me but for her, the not understanding because of all the nonsense that is out there about Autism, and being scared.
Cried for days, My husband already knew we would be going down this road he saw the signs, I did not want to see it, did not want to do the test, I just kept saying she will snap out of it, you will see just wait. But my loving husband and dad, said "honey, we have waited - its time now - its time so we can do everything humanly possible for Abbie if she does have Autism and get the treatments started now so she can be successful in life, its all right your a great mom, you love her and she knows and one day she will tell you, but lets do this, it can't hurt and only help." And I CRIED, CRIED and CRIED! The fighting is over, I give into the fact that we do the testing and wait and see what happens, maybe she really is just delayed. That was June 2011
Let the therapies begin
After all the evaluations TEIS did, they recommended several therapies, in home development therapy, OT therapy, until she turned two. Then we would have other therapies available to us. - She progress very slowly, She started walking at 18 months. It was amazing really she just decided I guess to pull up on bed and turned and walked to me. It was awesome, got that on video! YES. She was still not talking at 18 months. We were busy doing therapies and playing at home.
You know you really don't know how your child is progressing till you decided to do play dates with typical developing children. It was so very hard for me, Abbie could have cared less. She didn't interact with the other children, she didn't even look at them, or acknowledge they were in the room. I saw the other children going to their parents asking for things, wanting things, crying if they didn't get the item they wanted. And Abbie just sat there playing with her own toys and then would get up and run down the hall and back, laughing and just in her own little world. That was hard to realized that yes your child is delayed and maybe something else. No one can really understand what that feels like unless you have had it happen to you, especially if your children have grown and are typical.
You know you really don't know how your child is progressing till you decided to do play dates with typical developing children. It was so very hard for me, Abbie could have cared less. She didn't interact with the other children, she didn't even look at them, or acknowledge they were in the room. I saw the other children going to their parents asking for things, wanting things, crying if they didn't get the item they wanted. And Abbie just sat there playing with her own toys and then would get up and run down the hall and back, laughing and just in her own little world. That was hard to realized that yes your child is delayed and maybe something else. No one can really understand what that feels like unless you have had it happen to you, especially if your children have grown and are typical.
Developmental Delay
Ok, what does developmental delay mean, really. Everyone learns at there own pace and time. But with Abbie, she was delayed when she was place in my arms. We knew she would be from all the stories other parents told of - from adopting from China. So we were prepared, well as prepared as you could be.
When we got home she couldn't hold her head up and she was almost 8 months old. But with in a few weeks she was doing it, then at 10 months she started to roll over, and at 15 months started crawling. At 12 months our pediatrician and friend finally recommended we should have TEIS - Tennessee Early Intervention Service come out and help her get caught up. I was so scared and worried, but with prayer and friends, and pediatrician help we did, it was the best thing we could have done at the time and it turn out the best for Abbie.
When TEIS came out - our coordinator Carla - she did an initial evaluation and it came back seriously delayed. Then we had two therapist come out and did an OT evaluation and developmental evaluation. And both came back way below the norm. I knew she was delayed I just didn't realized how much until then. She was not walking or saying words. She was not playing with toys like typical developmental children did so the start of therapies to get her on track. I had a very hard time with all of this but knew that she would get on track, it just took some time. Just some time! I guess that what every parent says when your in this situation. Just give it some more time.
When we got home she couldn't hold her head up and she was almost 8 months old. But with in a few weeks she was doing it, then at 10 months she started to roll over, and at 15 months started crawling. At 12 months our pediatrician and friend finally recommended we should have TEIS - Tennessee Early Intervention Service come out and help her get caught up. I was so scared and worried, but with prayer and friends, and pediatrician help we did, it was the best thing we could have done at the time and it turn out the best for Abbie.
When TEIS came out - our coordinator Carla - she did an initial evaluation and it came back seriously delayed. Then we had two therapist come out and did an OT evaluation and developmental evaluation. And both came back way below the norm. I knew she was delayed I just didn't realized how much until then. She was not walking or saying words. She was not playing with toys like typical developmental children did so the start of therapies to get her on track. I had a very hard time with all of this but knew that she would get on track, it just took some time. Just some time! I guess that what every parent says when your in this situation. Just give it some more time.
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