Having been in the autism world for over 6 years now, I'd have to say, hands down that other parents are your best resource for information about your child's autism.
Of course, still go through the Pediatrician but follow your gut if they say, 'wait' or 'give it time' or 'boys are slower to talk than girls'. Our pediatrician didn't catch it. We went through our county for an evaluation. One day, I received a message from my son's new teacher who told me he qualified for 4, 1/2 days of school....he was 3. Even then, the word 'autism' was never spoken. He was speech and developmentally delayed. He started school and I started parent support meetings. At the second meeting I questioned developmentally delayed and a mom turned around in her chair, looked at me square in the eye and said, "Your boy has autism. They can't tell you he does because they would be responsible for all expenses if you didn't have insurance. Get yourself a Developmental Pediatrician right away." I went home in tears. He had autism but no one used the word AUTISM and what was a Developmental Pediatrician???
I found our local Developmental Pediatrician and was put on an 18 month waiting list. Unbelievable to me. I couldn't apply for medical assistance without an official diagnosis so I was waiting. Talking with another mom she told me how to get around the 18 month waiting list. Ready? I'll share it with you. When you get the extensive questionnaire to complete for the Developmental Pediatrician, also send back a copy of any sort of evaluation you had ever gotten on your child. This way, you don't need a 'team meeting' with the Doctor, only a one on one. I copied the school's evaluation and when he was 2, he received speech through a speech therapist and guess what......we were seen by that same Developmental Pediatrician in UNDER 2 WEEKS. Got that? 18 month wait reduced to under 2 weeks.
I then began to search online and found myself on facebook...imagine that. Anyway, I found that many adults on the spectrum have their own pages. I now follow many of them and if I get stuck, I just ask them. They give me a different way to look at things..my son's way. I am very thankful for that.
In short, I can list a bunch of websites or Doctor's names but save yourself time and talk with other parents. Others that have been there...done that. Get involved in a support group through your child's school or local autism agency. They can direct you where to go and how to get their faster..my experience anyway.
Thursday, April 4, 2013
Wednesday, April 3, 2013
Follow Them
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| Created by "Mommy Buddy" from the planet Autism. |
Tuesday, April 2, 2013
Autism-More Than a Definition
The definition of Autism from Wikipedia:
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.[2] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.[3] It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and pervasive developmental disorder, not otherwise specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met.[4
What I saw was a little boy who used to smile and laugh and make eye contact but somewhere along the line, that stopped. Exhausted all the time after having a newborn I couldn't think straight. My son would be up all night long while the baby slept; it was a vicious cycle. There are even times when my husband I will talk and I can't even recall chunks of time or an event. We used to fight. We never left the house. We were in a constant fog. The definition was great but who had the time to read?
We eventually went for help, which wasn't easy. Here is Our Path to a Diagnosis.
We have come a long way from that time. Constantly pushing forward and not looking back, progress has been made by everyone. Here is a blog about Our Therapies. Past-Present-Future.
My son is very sensory so the beach is his favorite place to go. This is a simple blog I put together using his words, Desperately Holding On.
Life is full of changes. You need to change in order to grow. After struggling for many years he has learned how to read. This night brought me to tears. In His Own Time.
By reading the above blogs, you will have learned more about our personal journey with autism but more importantly, autism is much more than a definition it's our way of life.
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.[2] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.[3] It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and pervasive developmental disorder, not otherwise specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met.[4
What I saw was a little boy who used to smile and laugh and make eye contact but somewhere along the line, that stopped. Exhausted all the time after having a newborn I couldn't think straight. My son would be up all night long while the baby slept; it was a vicious cycle. There are even times when my husband I will talk and I can't even recall chunks of time or an event. We used to fight. We never left the house. We were in a constant fog. The definition was great but who had the time to read?
We eventually went for help, which wasn't easy. Here is Our Path to a Diagnosis.
We have come a long way from that time. Constantly pushing forward and not looking back, progress has been made by everyone. Here is a blog about Our Therapies. Past-Present-Future.
My son is very sensory so the beach is his favorite place to go. This is a simple blog I put together using his words, Desperately Holding On.
Life is full of changes. You need to change in order to grow. After struggling for many years he has learned how to read. This night brought me to tears. In His Own Time.
By reading the above blogs, you will have learned more about our personal journey with autism but more importantly, autism is much more than a definition it's our way of life.
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| His favorite thing to do.... sit back and watch Lucky Penny Shop on the iPad. |
Monday, April 1, 2013
Why I Write About Autism
Since my son was diagnosed with autism when he was 4, my family has participated each year in the Walk Now for Autism Speaks. Our team name is Grape Jelly on Pizza. I decided to take it to social media and created a facebook page primarily to do some fundraising so I gave the page the same name as our walk group. Why Grape Jelly on Pizza? One night my son went into the refrigerator, took out the grape jelly and smeared it all over his pizza. Wondering what he'd do next..he ate it and LIKED it! Children with autism usually aren't good eaters but my son loves food.
While running the FB page, I found out that many other parents felt and thought how I did....the best information about ASD (Autism Spectrum Disorder) comes from other parents. So, like everything else in life, evolution took place. The page is now an on-line support group with over 3,100 readers. I am no longer interested in using it for fundraising but for sharing experiences with our ASD kiddos.
Last year I decided to blog. Now, I'm not a writer; I'm a mom. I don't have a degree in writing, if I didn't have spellcheck...watch out and punctuation can get out of control. Some days I have lots to say, other times I can't find the words. BUT I keep trying. Last year I entered the WEGO Health Activist Writer's Month Challenge and failed because time got away from me. I'm back for another go. It's a personal challenge for me. The daily prompts make me think outside the box and lets face it, that is what we do for our kids all the time.
On the FB page and blog, I do share information about my son but also want to hear from all of the readers. We get to know each other and become friends. Guest Bloggers are also welcome. Some days can get out of control and you need to keep a positive outlook to keep going, my thoughts anyway.
I strongly believe that by sharing your ASD child's progress, you are giving others hope.
While running the FB page, I found out that many other parents felt and thought how I did....the best information about ASD (Autism Spectrum Disorder) comes from other parents. So, like everything else in life, evolution took place. The page is now an on-line support group with over 3,100 readers. I am no longer interested in using it for fundraising but for sharing experiences with our ASD kiddos.
Last year I decided to blog. Now, I'm not a writer; I'm a mom. I don't have a degree in writing, if I didn't have spellcheck...watch out and punctuation can get out of control. Some days I have lots to say, other times I can't find the words. BUT I keep trying. Last year I entered the WEGO Health Activist Writer's Month Challenge and failed because time got away from me. I'm back for another go. It's a personal challenge for me. The daily prompts make me think outside the box and lets face it, that is what we do for our kids all the time.
On the FB page and blog, I do share information about my son but also want to hear from all of the readers. We get to know each other and become friends. Guest Bloggers are also welcome. Some days can get out of control and you need to keep a positive outlook to keep going, my thoughts anyway.
I strongly believe that by sharing your ASD child's progress, you are giving others hope.
Tuesday, March 26, 2013
Learning to Tie Shoes with Loopeez
Not sure about you but Velcro shoes are a MUST in our household or at least they were. Velcro is so simple and easy when you need to run out the door especially when the kids were younger.
Every 6 months, my son's Occupational Therapist goes over his self help goals. For YEARS we have skipped over tying shoes because of Velcro. He turned 9 this year and we realized it was time to teach him how to tie shoes. Sounds easy...right? I asked parents on GJOP how they taught their children how to tie and was told about the Loopeez Facebook page. This was the first time I have ever heard of Loopeez.
During his therapy sessions, he could make the first tie successfully but when it came to making the loops, it was very difficult for him to hold both loops and tie at the same time without it falling apart. We took Loopeez into his therapy session and it happened!! This is where Loopeez was PERFECT for him!
Every 6 months, my son's Occupational Therapist goes over his self help goals. For YEARS we have skipped over tying shoes because of Velcro. He turned 9 this year and we realized it was time to teach him how to tie shoes. Sounds easy...right? I asked parents on GJOP how they taught their children how to tie and was told about the Loopeez Facebook page. This was the first time I have ever heard of Loopeez.
During his therapy sessions, he could make the first tie successfully but when it came to making the loops, it was very difficult for him to hold both loops and tie at the same time without it falling apart. We took Loopeez into his therapy session and it happened!! This is where Loopeez was PERFECT for him!
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| He's making the first tie. |
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| He's putting the Loopeez on and making his two loops. |
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| He has made his two loops and is now tying the shoe independently. |
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| He did it!!! |
Bottom line is we are very happy with how this product assists him with making the loops. Next time he's ready for new sneakers....we're getting tie shoes for sure!
Check out Loopeez on-line for your set.
Monday, February 25, 2013
Guest Blogger: Reader Cassandra Atkins
Feeding questions come up many times on Grape Jelly on Pizza. This is how Cassandra got her 5 year old son to eat healthy foods.....
I have no links and I didn't do any research on how to do this for Al. WE just did what we thought was right and this was before we even knew he had a diagnosis of Autism. I actually felt guilty after I found out that food aversions went along with the diagnosis. Then the docs started telling me I did well. That helped some, but I am a Momma. I think it is in our DNA to feel guilty and question what we do even if it turns out for the best. I hope this helps someone, anyone.
When Al, our oldest son who happens to have Aspergers, was about 5 we got tired of him not eating much of anything. He was overweight and we kept thinking if we could just get him to eat good things it might just help. So began our journey of getting this wild child to eat. OK when I say eat something, I mean something other than what I hear is usually the standard for our kids. I think you all know the diet. It consisted of chicken nuggets, chips and cookies that are not broken or chipped, bananas, Vienna sausages, canned carrots, I think those are real veggies, and steak. OK so the steak is a surprise but in his defense he thought anything that was not hamburger or hot dogs or chicken was steak. Oh and we also went through the no meat except Momma tricking him into eating chicken salad that came from the hometown chicken place. They knew me really well there.
We decided that he had to eat better. It was getting to the point that he was throwing his school food in the trash can. We had gotten worried. We were also tired of the 'oh he will eat when he gets hungry', or the docs telling us to use vitamins and the supplement drinks. We figured we are Mom and Dad we can fix this. So we did.
It took us about a year and a half but we won. It wasn't that hard either. This is how we did it. Every night we sat at the dinner table together. Al sat by me. We fixed every ones plate and we started the rule, no dessert unless you take at least 2 bites of everything on your plate. This was not fun to begin with. After Al ate what he wanted, I took the spoon and fixed a big spoonful of whatever was left and he had to eat 2 of them. At first we had to bribe him with really chocolaty things or things that he loved. After the first 3 or 4 nights he caught on that we were not playing and this was how it was going to be, period. After 6 months, we let him fix his own spoonfuls. He would do it but only if we had dessert. Al is now 11 and we still have dessert after every supper.
One night we all went out to eat and Dad chose Chinese. Any other time we had Chinese food, I had order fries and chicken so Al would eat. So this is what I did that night. I went back and fixed our middle son Ras' plate. I had put broccoli and cashew chicken and the stir fried green beans, plus fixed him a small salad with ranch dressing. This was normal for Ras he has always loved salads and veggies of any kind. I sat down and started to eat and Al looked at me and said, "Momma, where is my broccoli?" "What Al? Did you really just ask for broccoli?" "Yep I love it." I went back and fixed him 2 pieces, thinking why am I wasting my time? He is so not going to eat this. I took it back to the table and he ate it and asked for more. This time I took him up to the buffet and let him choose. By this time we had started the clean your plate rule.
Finally after about 1 1/2 years my baby was eating, and it was real food. No longer did I have to beg and plead he just ate. We have been told by all special ed teachers, who have dealt with lots of ASD kids that they are amazed. Al is a very adventurous eater. He will try 2 bites of anything on his plate, no matter what it is or what it looks like. He even went from throwing a whole food tray away at school because they put lettuce and tomatoes on it to begging for salads and eating them every day at school with ranch dressing of course.
Please feel free to ask me questions. I will try to answer them. This worked well for us. The main thing to remember is be consistent. I chose supper, that was when we were all together and he was home. We even did this if we went out to eat. You can just imagine what I heard when I started this because I was using dessert. Well, guess what he lost weight. Yep, even though he got and still does get, a cookie or piece of pie/cake, pudding whatever every night, he lost weight and has not gained it back. Everything in moderation. Besides, I am so proud of Al, I would never take things he loves from him just because someone says it could be unhealthy. The one thing I limit is red dye. We see a difference in him when he drinks/eats it. He still can have it; red is his favorite color, but only weekends or special occasions. I have discovered that the red dye in food coloring gel, the kind cake decorators use, they sell it at Walmart in the cake decorating area, does not affect him at all. I use that for homemade cakes, cookies, icings and candies that I make, bake and make lots of stuff homemade. I started doing it to save money and discovered that all of us feel better and like homemade stuff better. I am a stay at home mom so I have time. Nothing wrong with store bought, I do that too Good luck and I hope my crazy rambling story helps just one kid out there. I know from experience that they feel so much better when they eat a good balanced meal. As Al says at the end of every sentence, they feel better literally. No Momma I mean it seriously:)
I have no links and I didn't do any research on how to do this for Al. WE just did what we thought was right and this was before we even knew he had a diagnosis of Autism. I actually felt guilty after I found out that food aversions went along with the diagnosis. Then the docs started telling me I did well. That helped some, but I am a Momma. I think it is in our DNA to feel guilty and question what we do even if it turns out for the best. I hope this helps someone, anyone.
When Al, our oldest son who happens to have Aspergers, was about 5 we got tired of him not eating much of anything. He was overweight and we kept thinking if we could just get him to eat good things it might just help. So began our journey of getting this wild child to eat. OK when I say eat something, I mean something other than what I hear is usually the standard for our kids. I think you all know the diet. It consisted of chicken nuggets, chips and cookies that are not broken or chipped, bananas, Vienna sausages, canned carrots, I think those are real veggies, and steak. OK so the steak is a surprise but in his defense he thought anything that was not hamburger or hot dogs or chicken was steak. Oh and we also went through the no meat except Momma tricking him into eating chicken salad that came from the hometown chicken place. They knew me really well there.
We decided that he had to eat better. It was getting to the point that he was throwing his school food in the trash can. We had gotten worried. We were also tired of the 'oh he will eat when he gets hungry', or the docs telling us to use vitamins and the supplement drinks. We figured we are Mom and Dad we can fix this. So we did.
It took us about a year and a half but we won. It wasn't that hard either. This is how we did it. Every night we sat at the dinner table together. Al sat by me. We fixed every ones plate and we started the rule, no dessert unless you take at least 2 bites of everything on your plate. This was not fun to begin with. After Al ate what he wanted, I took the spoon and fixed a big spoonful of whatever was left and he had to eat 2 of them. At first we had to bribe him with really chocolaty things or things that he loved. After the first 3 or 4 nights he caught on that we were not playing and this was how it was going to be, period. After 6 months, we let him fix his own spoonfuls. He would do it but only if we had dessert. Al is now 11 and we still have dessert after every supper.
One night we all went out to eat and Dad chose Chinese. Any other time we had Chinese food, I had order fries and chicken so Al would eat. So this is what I did that night. I went back and fixed our middle son Ras' plate. I had put broccoli and cashew chicken and the stir fried green beans, plus fixed him a small salad with ranch dressing. This was normal for Ras he has always loved salads and veggies of any kind. I sat down and started to eat and Al looked at me and said, "Momma, where is my broccoli?" "What Al? Did you really just ask for broccoli?" "Yep I love it." I went back and fixed him 2 pieces, thinking why am I wasting my time? He is so not going to eat this. I took it back to the table and he ate it and asked for more. This time I took him up to the buffet and let him choose. By this time we had started the clean your plate rule.
Finally after about 1 1/2 years my baby was eating, and it was real food. No longer did I have to beg and plead he just ate. We have been told by all special ed teachers, who have dealt with lots of ASD kids that they are amazed. Al is a very adventurous eater. He will try 2 bites of anything on his plate, no matter what it is or what it looks like. He even went from throwing a whole food tray away at school because they put lettuce and tomatoes on it to begging for salads and eating them every day at school with ranch dressing of course.
Please feel free to ask me questions. I will try to answer them. This worked well for us. The main thing to remember is be consistent. I chose supper, that was when we were all together and he was home. We even did this if we went out to eat. You can just imagine what I heard when I started this because I was using dessert. Well, guess what he lost weight. Yep, even though he got and still does get, a cookie or piece of pie/cake, pudding whatever every night, he lost weight and has not gained it back. Everything in moderation. Besides, I am so proud of Al, I would never take things he loves from him just because someone says it could be unhealthy. The one thing I limit is red dye. We see a difference in him when he drinks/eats it. He still can have it; red is his favorite color, but only weekends or special occasions. I have discovered that the red dye in food coloring gel, the kind cake decorators use, they sell it at Walmart in the cake decorating area, does not affect him at all. I use that for homemade cakes, cookies, icings and candies that I make, bake and make lots of stuff homemade. I started doing it to save money and discovered that all of us feel better and like homemade stuff better. I am a stay at home mom so I have time. Nothing wrong with store bought, I do that too Good luck and I hope my crazy rambling story helps just one kid out there. I know from experience that they feel so much better when they eat a good balanced meal. As Al says at the end of every sentence, they feel better literally. No Momma I mean it seriously:)
Monday, February 4, 2013
From One Young Man to the Next
I received an e-mail from a local mom who wanted to know if my son would like a K'Nex set. Of course he would! My boy loves K'Nex. She went on to tell me that her son, who would be entering high school next year, is ready to part with some of his prized sets. This made me a bit anxious. I mean, my boy loves K'Nex to make his own creations would he be able to handle an intricate motorized one? You never know until you try.
So, we planned on meeting on a Saturday at our local autism organization, ARCH of the Lehigh Valley. He woke up, came down stairs and said, "I want to go somewhere." I asked him if he wanted a new K'Nex set and he said, "YES!" I told him a boy named D wanted to give him his set that he had when he was little and this went totally over his head. Eventually, he got dressed. Shorts and t-shirt...the perfect attire when it is 19 degrees outside...don't you think?
On our way to the meeting, he kept asking about K'Nex and hubby and I kept reminding him that he needed to be patient and say thank you. We pulled into the parking lot. His excitement was obvious. Hand flapping, tip toeing that eventually changed into running. "No running in the parking lot," I reminded him. He grabbed my arm and started hopping to the door.
Walking through the doors, I spotted the mom and D. My boy didn't meet him before so he went into the deep crowd of people. I Lost sight of him for a bit but eventually he came back and I introduced him to D. Possibly a bit hesitant, D gathered the box and with a big smile, handed it over to my son. He extended his hands to finally hold the box, looked at the picture and said, "Wow. Thank you." At this point, it really felt like a moment from Toy Story 3; the handing down of a treasured toy, a young man with Aspergers to a boy with Autism. Hubby encouraged our boy to shake D's hand. Without hesitation, his little hand was extended to D's hand. They shook, both with big smiles on their faces. This brought a tear to my eye. Someday my boy will be going to high school. He will be as big as D.
We immediately went home to build his new K'Nex big boy set. It was the best Saturday in a long time.
So, we planned on meeting on a Saturday at our local autism organization, ARCH of the Lehigh Valley. He woke up, came down stairs and said, "I want to go somewhere." I asked him if he wanted a new K'Nex set and he said, "YES!" I told him a boy named D wanted to give him his set that he had when he was little and this went totally over his head. Eventually, he got dressed. Shorts and t-shirt...the perfect attire when it is 19 degrees outside...don't you think?
On our way to the meeting, he kept asking about K'Nex and hubby and I kept reminding him that he needed to be patient and say thank you. We pulled into the parking lot. His excitement was obvious. Hand flapping, tip toeing that eventually changed into running. "No running in the parking lot," I reminded him. He grabbed my arm and started hopping to the door.
Walking through the doors, I spotted the mom and D. My boy didn't meet him before so he went into the deep crowd of people. I Lost sight of him for a bit but eventually he came back and I introduced him to D. Possibly a bit hesitant, D gathered the box and with a big smile, handed it over to my son. He extended his hands to finally hold the box, looked at the picture and said, "Wow. Thank you." At this point, it really felt like a moment from Toy Story 3; the handing down of a treasured toy, a young man with Aspergers to a boy with Autism. Hubby encouraged our boy to shake D's hand. Without hesitation, his little hand was extended to D's hand. They shook, both with big smiles on their faces. This brought a tear to my eye. Someday my boy will be going to high school. He will be as big as D.
We immediately went home to build his new K'Nex big boy set. It was the best Saturday in a long time.
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| His First Motorized K'Nex Set from D |
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