I was thinking I should share a bit more about my background so you know where I am coming from and give you more details about our start into the Autism world.
My daughter Julie is a beautiful 4 year old who I think is amazing. She has a twin sister Jadyn and an awesome brother Johnny who is 4 years older than her. She was diagnosis a year ago so while right now I am going back in my memories in future blogs you will be taking the journey with me.
My husband and I suspected something was not quite right when she was about 2 years old. But like the proverbial ostrich we stuck our heads in the sand and made excuses for the things she wasn’t doing. For example we used Julie being a twin as an excuse. Her sister was making much quicker progress than she was. Our excuse was that her sister talked for her. Or we would say it’s just a twin thing or twin talk. Twins were new to us as well. There were no twins that ran in our family so we didn’t know what it was all about. On the other hand she would make some progress and we would just say she was going to be a late talker and there was nothing to worry about.
When she neared 3 years old there was no mistaking something was different. I remember googleing the thing’s she was doing or rather wasn’t doing and what I kept seeing was Autism, PDD/NOS or Aspergers.
Here were some of the warning signs for us. She had very limited speech. She didn’t point. She fixated on dinosaurs, she had very little or no eye contact. She needed to rock and it wasn’t just for enjoyment but something that she had to do. She seemed to not be phased by pain and actually seeked situations where she could bump herself. She would walk like a drunken sailor down the hall bumping into the walls as she went. She was still walking on her toes long after she was supposed to have put her landing gear down. She would line things up rather than play appropriately with them. She would even take a Christmas catalog full of children’s toys and look for every dinosaur in the entire book. Dinosaurs are still a huge part of our life; it is her thing. If all that wasn’t enough it really hit me when I decided to ask Julie a very simple question as a little test. I asked her where the light was. It was right above her and I thought that would be an easy question to answer but when asked, there was nothing. A brief glance my way but nothing more. I thought well perhaps the question was too hard so I looked at my other daughter and asked her where is the light? She walked up to me grabbed my hand brought me to the closet and pointed to a flashlight. It wasn’t that the question was too hard. For my other daughter the question was too easy. Why is mom asking me where the light is when it is in plain view she must want for me to find something for her. I knew that I couldn’t ignore what was happening any more. I made an appointment with our pediatrician. When I went to the doctor she did a simple test to screen for Autism I can’t remember the name of it but I know it was one of the standardized tests used to check for Autism. Part way through the test I knew it wasn’t going well. She said she wanted me to go to their developmental clinic and get in touch with early childhood education because she was pretty sure Julie had autism.
The developmental Clinic was quite the experience. There was a Pediatrician to check her health, a social worker to make sure I was on the level, a speech therapist to check what level her speech was at. A Physiologist which basically I thought was there to show how smart he was (can you tell I didn’t like him!) an occupational therapist to check her gross motor and fine motor skills, a physical therapist to check how her legs and body was developing and a geneticist to check for Fragile X syndrome. I was told that they would make their assessment and then send me a report and her diagnosis if there was one but by the time I left they had given me a written diagnosis of classic ASD or Autism Spectrum Disorder. Which was basically was described to me as having impairment in 3 main areas. Social, communication and sensory. Like I said in an earlier blog I shook their hand thanked them for their help was told to contact Early Childhood education. That was a pretty heavy day.
I later contacted the county and had someone come to the house to access her. She played with her for about 15 minutes and said she would be in contact but thought that Julie would qualify for services. They did immediately put Julie in what they called a DG group which was a Developmental group where the kids that were there had an array of disabilities from very mild to severe. We then needed an educational diagnosis to get her to be eligible to have services through the County. That team consisted of a 3rd party evaluation, an evaluation from a speech therapist and an evaluation from her DG teacher. She qualified and was then put into a class specific to Autism. I can go into all of that a t as later time but this was how it all started.
There is a start to every journey a reason to go on a journey. This was ours.
Blessings,
Janelle
Tuesday, February 24, 2009
Sunday, February 22, 2009
Here are some things we did early on that really helped our family.
1. Find a support group.
I can’t tell you how amazing it is to be able to talk to other families that understand your special circumstances. The friends you had before Autism may not understand what your family is going through. For me my friends did a good job trying to support me but didn’t understand why I was feeling the way I did at certain times. Also some of the behaviors of my child were definitely “different” from their children. It is scary to watch for people that don’t understand and while you can’t catch Autism some people act differently around you then they did before. No bad on them, they don’t mean to do it. I think it is part of human nature to be scared of what you don’t understand. This was one of the reasons that a support group was so special for us. The other benefit to finding a support group is there are other people that have already been there and done that. They can be a great resource as you decide what treatments you want to choose for your child. Ultimately you will decide what is best for your child but it is great to see what others have experienced. If you do not have a specific Autism support group in your area try and find a general special needs group. They get it too!
2. Learn about all of your treatment options. A great resource is the 100 day kit from Autism speaks here is a PDF of the kit. http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf
I will go into what we did and are doing in later blogs but learning what is out there is a great way to see what approach might work for your child.
3. Gather your team
In this fight you need help. Our team consists of her primary care physician, her neurologist, state early intervention services, developmental disabilities, an array of therapists including Speech, OT, ABA, RDI. Friends that have special needs kids, Friends without special needs kids (yes, talking to people about things other than autism is important too!) Finally, get your family on board. Grandparents mean well but often don’t understand what Autism is and it is hard for them to believe that their sweet grandchild is “different” I was really lucky and had parents and a Mother in Law that wanted to help in any way they could. They listened to what things we were doing with her and changed their behavior to meet our needs. A really good resource for Grandparents and other friends and family is a book called “Ten things every child with Autism wishes you knew” Written by Ellen Notbohm. They are some general things and tips that can help introduce your loved ones to this new world.
Please know in all this it’s ok to cry, it’s ok to be scared. You will probably feel overwhelmed at times but you CAN do it! You will find a way. You are strong and there are many people that can help you and support you along the way. You can make life for your family better. You can help your child. You have been chosen for a reason to care for your very special child. Be strong, your not alone!
I can’t tell you how amazing it is to be able to talk to other families that understand your special circumstances. The friends you had before Autism may not understand what your family is going through. For me my friends did a good job trying to support me but didn’t understand why I was feeling the way I did at certain times. Also some of the behaviors of my child were definitely “different” from their children. It is scary to watch for people that don’t understand and while you can’t catch Autism some people act differently around you then they did before. No bad on them, they don’t mean to do it. I think it is part of human nature to be scared of what you don’t understand. This was one of the reasons that a support group was so special for us. The other benefit to finding a support group is there are other people that have already been there and done that. They can be a great resource as you decide what treatments you want to choose for your child. Ultimately you will decide what is best for your child but it is great to see what others have experienced. If you do not have a specific Autism support group in your area try and find a general special needs group. They get it too!
2. Learn about all of your treatment options. A great resource is the 100 day kit from Autism speaks here is a PDF of the kit. http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf
I will go into what we did and are doing in later blogs but learning what is out there is a great way to see what approach might work for your child.
3. Gather your team
In this fight you need help. Our team consists of her primary care physician, her neurologist, state early intervention services, developmental disabilities, an array of therapists including Speech, OT, ABA, RDI. Friends that have special needs kids, Friends without special needs kids (yes, talking to people about things other than autism is important too!) Finally, get your family on board. Grandparents mean well but often don’t understand what Autism is and it is hard for them to believe that their sweet grandchild is “different” I was really lucky and had parents and a Mother in Law that wanted to help in any way they could. They listened to what things we were doing with her and changed their behavior to meet our needs. A really good resource for Grandparents and other friends and family is a book called “Ten things every child with Autism wishes you knew” Written by Ellen Notbohm. They are some general things and tips that can help introduce your loved ones to this new world.
Please know in all this it’s ok to cry, it’s ok to be scared. You will probably feel overwhelmed at times but you CAN do it! You will find a way. You are strong and there are many people that can help you and support you along the way. You can make life for your family better. You can help your child. You have been chosen for a reason to care for your very special child. Be strong, your not alone!
Thursday, February 12, 2009
My Child has Autism now what?
My child has Autism now what?
You’re in the doctor’s office, development clinic, or at the school and someone looks at you from across the desk with that look that you know is never good. A look of sympathy and concern. You know immediately something isn’t right. That the assumptions you had about your child’s progress were coming true. Then the words come. “I am sorry to tell you this but your child has Autism.” It doesn’t matter the degree to which they have it. Mild or severe; Aspergers or Retts. It all hits you the same way. Like a blow to the chest. The cannon ball had been shot and it landed right in your lap and is followed by the waves of questions and doubt. “Did I do anything to cause this?” “Can my child be cured?” “Where do I find help?” “WHY MY CHILD?”
I know this feeling very well. I can remember like it was yesterday. I was strong when the news was given to me about my daughter. I kept my composure the best I could. I even said thank you and took her hand and walked out. It was the days and weeks that followed that tested every part of my being. The questions and doubt came quicker in between the tears. I remember reading the statistics that 80% of marriages end in divorce if you had a child with special needs. I remember looking at pictures and videos of children upon children with the same vacant stare that my child had in her eyes. I remember watching a program where a father said that some day’s he wondered if his child would be better off if he took a walk to the lake behind their house and drowned. Like to somehow save his child from this world. Watching that father was a turning point for me. I was not like that man. I feel blessed to have my children no matter what package they come in. I was going to make sure my child would be better off with me helping her then not here at all! I wasn’t going to live in the world of sadness hopelessness and doubt any longer. I knew the road wasn't going to be easy. I knew there would be a lot of bumps and crossroads along the way. But I wasn’t going to give up as that man did. I wasn’t going to deny my daughter the best life possible or myself the best life possible by giving in or giving up. I now had a mission. One of acceptance, activism, and hope. I owed that to my daughter, my other children, my husband and myself.
You’re in the doctor’s office, development clinic, or at the school and someone looks at you from across the desk with that look that you know is never good. A look of sympathy and concern. You know immediately something isn’t right. That the assumptions you had about your child’s progress were coming true. Then the words come. “I am sorry to tell you this but your child has Autism.” It doesn’t matter the degree to which they have it. Mild or severe; Aspergers or Retts. It all hits you the same way. Like a blow to the chest. The cannon ball had been shot and it landed right in your lap and is followed by the waves of questions and doubt. “Did I do anything to cause this?” “Can my child be cured?” “Where do I find help?” “WHY MY CHILD?”
I know this feeling very well. I can remember like it was yesterday. I was strong when the news was given to me about my daughter. I kept my composure the best I could. I even said thank you and took her hand and walked out. It was the days and weeks that followed that tested every part of my being. The questions and doubt came quicker in between the tears. I remember reading the statistics that 80% of marriages end in divorce if you had a child with special needs. I remember looking at pictures and videos of children upon children with the same vacant stare that my child had in her eyes. I remember watching a program where a father said that some day’s he wondered if his child would be better off if he took a walk to the lake behind their house and drowned. Like to somehow save his child from this world. Watching that father was a turning point for me. I was not like that man. I feel blessed to have my children no matter what package they come in. I was going to make sure my child would be better off with me helping her then not here at all! I wasn’t going to live in the world of sadness hopelessness and doubt any longer. I knew the road wasn't going to be easy. I knew there would be a lot of bumps and crossroads along the way. But I wasn’t going to give up as that man did. I wasn’t going to deny my daughter the best life possible or myself the best life possible by giving in or giving up. I now had a mission. One of acceptance, activism, and hope. I owed that to my daughter, my other children, my husband and myself.
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