Living with Autism
It sounds so easy when you say it, but living with someone with Autism not easy at all. It’s the hardest thing you will ever do!
Our son was born in 1986 healthy and strong we didn’t know it then but My husband and I were in for the ride of a lifetime. He was growing and healthy then when he had his baby shots everything changed in an instant! His second series of shots he ran a high fever and his leg swelled to almost double its size. We rushed him to the hospital and they said he would be fine just give him tylenol as directed. We went home unknowing that he was having seizures due to the shots.
Time passed and he kept having these doubling over spells and the doctors continued to tell us he was fine. Then when he was 2 1/2 years old he got really unresponsive one afternoon and we rushed him to the hospital. This is when we found out Dusty had Infantile Spasms its one of the hardest to detect seizure disorders and the worst one know at the time.
Finding Doctors to Help us
We spent a week in Children’s Hospital in New Orleans under the care of an amazing Doctor, Dr. Ann Henderson Tilton. She was amazing she put us in touch with doctors from all over the country that was going to help our son, she was a God send!
We finally after two plus years living with no diagnosis, thinking we were awful parents and feeling so helpless to help our son. We then had actually three diagnoses. We found out that week Dusty had Seizures and he also had Tuberous sclerosis, and Autism.
I went to work learning about Tuberous Sclerosis and Autism
I had taken some classes at the local college and had access to the Medical library so I went to work learning everything I could about Autism and Tuberous Sclerosis. I looked for the best doctors to treat our son and I also found out about conferences that had talks on Autism and I went to every conference in the school system that had anything to do with Autism. I bought medical books and borrowed medical books from doctors and friends.
I learned about the studies going on in Chicago Children’s Hospital and we scheduled with Dusty’s doctors to go and see the doctor that actually was helping children with Tuberous Sclerosis. He was amazing! He taught us so much! He actually kept seeing Dusty til he was 14 Dr. Huttenlocker was in his late 80’s and still saw just a few of his long time patients and Dusty was one of them.
In his tenure as a doctor he taught some of the best doctors. One of his life long friends and colleague we still see to this day. Dr. Franz he is amazing and has done so much to help us with Dusty’s care and he also teaches other doctors all over the world about Tuberous sclerosis.
What is Tuberous Sclerosis?
Tuberous Sclerosis is a genetic disorder that causes tumors to form and grow in many different parts of the body and in the organs. Most of the tumors are in the brain, eyes, kidneys, heart skin and the lungs. If you would like to find out more here is the link to The TS Alliance This is the National Organization for TS they have a wealth of information for parents and caregivers.
What affects TS (tuberous sclerosis) patients the most is associated with the brain. They will have seizures, developmental delays, impaired intellectual disabilities and Autism.
Many people with TS will live independently and have normal lives. They will even have challenging professions such as teachers, nurses, lawyers and doctors.
When our son was diagnosed with TS at 3 1/2 he was already diagnosed with seizures and autism. He was quickly placed on seizure medicines and put in therapy to see how serious his developmental delays were. He was diagnosed late and his seizures went undiagnosed for 2 1/2 years. With that amount of time with uncontrolled seizures it did a lot of damage to his brain.
From the very beginning it was hard to gain seizure control for Dusty. He would have breakthrough seizures every day even on very high doses of seizure medicines. Sometimes he was at the maximum strength doses on several medications and still having seizures. We were at a loss of how to gain seizure control.
The Ketogenic Diet
We tried the Ketogentic diet when he was 9 and gained two years of seizure control. We gave him his booster shot before school started and he went back to having seizures almost immediately. We have struggled to get back to a seizure free day. As of yet he still is not seizure free. This is why I have started telling our story. I want to let others know there is hope and there is a way through the diagnosis of TS and Autism and seizures.
The ketogentic diet changed Dusty’s life for the better and he was seizure free for two years. This blog is about managing a child with a severe diagnosis. There is hope here. From the great tasting recipes, to the organizational record keeping ideas, Even how to keep the toxins out of the food and out of the environment around your family. I offer advice, recipes, and a little of what we have done to eliminate toxins from our home and food. I found out so much from our doctors, and several years ago they gave me The Charlie Foundation website. They were parents just like me looking for a way to control their child’s seizures. They are a wealth of information be sure to check them out if you are dealing with uncontrolled seizures.
I still use the recipes from these books on an ongoing basis. If you are looking for a couple of really good recipe books then here are the ones I have and use a lot. I will take the basic recipe and tweak it. When I tweak a recipe I will put it here in the recipe section so be sure to come back often and see what I have added lately.
Our son stopped talking when he was around 3 1/2 and went for almost 4 years before he said another word. We were so frustrated we didn’t know why he would not say a word!
We were able to get the school involved they saw that he wasn’t talking and was beginning to show delays in other areas. He wasn’t formally labeled with Autism til much later in his schooling around his third year of formal schooling.
I went to work learning everything I could about Autism. In the 80’s there wasn’t a lot of information like there is now. Websites would have outdated information and finding a group then was hard.
Now there are so many resources to help you learn about Autism and what you as a parent needs to do and learn so you can help your child.
Finding Help for Families Dealing with Autism
The Autism Society has a wealth of information on local chapters of Autism groups all around the country. They were the first place I looked to for help. I joined a local support group in the city where we lived and I learned from other parents what they were doing. Which doctors were using the most up to date treatments for their patients. I was able to connect with other parents and that alone helped us as a family so much.
Each child is different but it is so much easier knowing there is someone else dealing with some of the same things you are dealing with. Being apart of a group took away that feeling of being all alone .
Another group we quickly found a lot of help from was Autism speaks they had so much news and information for parents. I found out about the latest technologies used with children with Autism in the classrooms and in the home environment.
We found local chapters that were very active in the local community where we were. We had walks, fun runs and we did all kinds of local fun things with our children so they could feel apart of the community.
We were able to find a Boy Scout group that had other boys that were autistic and they had lots of parents and siblings that were very active and helpful.
Dealing with Food Allergies
We had a sweet dear family friend Aunt Kay she was so much fun and such a good friend she was teaching me how to sew she also had a grandson with food allergies. She went to work teaching me all about food allergies.
I learned that what you ate had a major impact on behavior, cognitive learning and the way your body heals itself. I went to work to change our diet to a more home cooked, fresh diet.
I stopped buying any processed foods, no cookies or cakes unless I made them from scratch. I cut the sugar in half from the very beginning. As time went on I cut sugar our of my baked goods almost completely I only used what was necessary for breads and cakes to rise. If I could use something else instead of sugar I did.
Once Dusty started going to school I had the problem of the school lunches. After lunch they would see a rise in behavior problems due to the foods he was eating. Then we started sending his lunches but that didn’t work he would eat the lunch before he got to school. The school worked with us on how Dusty’s lunches would be fixed but it was no small task.
The lunch ladies would do their best to help make sure he didn’t get anything that was on his list of foods he couldn’t eat. Some days it was easy other days he would have temper tantrums for things he saw. Then they would do their best to get him back to the class room to try to get him to eat something.
During his early years of school he would talk but it was just for what he wanted and he would never look at you or talk to you. Then we figured out he liked computers. Then his world changed.
Dusty’s Early School Years
We started him on computers when he was in second grade, first it was just typing out his spelling list and as he got better at the computer he started playing games and then he would type entire pages from a book word for word.
By third grade he could actually program things on the computer. He somehow picked up the computer language and started changing things in the computers he used. He was able to change passwords and locked out the entire third grade class from using the computers one day until we could get him to change them back.
He enjoyed his time on the computers and it took up a lot of his time up until we moved to Kentucky. He progressed to where he could do some of the simple office work in the office and he had a file of things he did everyday in the office. He never made a mistake in his office work. He was really good at it.
They were looking at putting him in classes in high school to teach him how to work in an office environment around other co workers. The classes were full and he would have to wait til his last two years of school before he could get in the classes. In special ed it is pretty much first come first served when it comes to the very best classes. Those classes fill up really fast.
I am sure a lot has changed since the early 2000’s in special education. They were just on the cusp of learning how to deal with the Autistic child in the main-streamed school setting. All of Dusty’s time in school he had to have someone who stayed with him every hour he was at school. His seizures were uncontrolled and he would just do what he wanted and go where he wanted unless someone was there to re-direct him back on task.
When we moved to Kentucky he had an amazing teacher Miss. Grider. She took a lot of time with all her students and even won national teacher of the year the second year he had her as his teacher.
Her and her assistants made amazing progress with Dusty and several of the other students as well. Then Dusty’s third year everything changed. Miss. Grider left and they hired a career teacher that only wanted to finish up her years so she could retire she had a lot of seniority over the better teachers and she acquired the best teaching spot or so I was told.
She didn’t like Dusty at all and I knew it. There was nothing I could do! Dusty was in a class now where he actually hated to go to school and protested everyday not to go to school. Still to this day he doesn’t want anything to do with school.
My Best Advice…
My best advice I can give is if your child hates to go to school then there is something wrong. Do your best to change it. Move your child to another class or even to another school it is better to move them than to let them be taught by someone they don’t want to be around.
They are just like us sometimes they just don’t like someone or their personalities clash. I know when I was in school I had teachers I just didn’t like and I didn’t do well in their class either. It would have been better if my parents would have just moved me to another class.
When Dusty was in Middle school I worked with other parents as an advocate between them and the school system. I helped parents get the services they needed for their children.
Because of me helping parents and being a parent of a child with Autism the school system word pay for me to go to the same trainings the teachers went to. I went to-day conferences with Dusty’s doctors and I took the same continuing education classes special education teachers took. A lot of times I was sitting right alongside Dusty’s teachers and his doctors.
Any training remotely related to Autism or seizures I took it. I would save money to make sure that I went when the school system couldn’t pay my way or could only pay a part of my way. I spoke up in classes and in forms they would have asking as many questions as I could to stem even more discussion on Autism and how to teach them in a way they could relate to.
Seizures have been something I have dealt with everyday since Dusty was 2 1/2 months old that is when he had his first seizure. He had just had his second series of baby shots and this is when his seizures started. He went undiagnosed for two years before the doctors found out he was having seizures. I knew something was wrong!
If you think something wrong it probably is…
If I have any advise for you it’s this! If you think somethings wrong, it probably is. If you can’t get an answer keep looking for a doctor that will find out whats wrong with your child. A mother just knows when something is wrong, don’t second guess yourself.keep asking until you find someone to listen to you.
Finding Help for Someone With Seizures
If you want to find out more about seizures The Epilepsy Foundation is a wealth of information. They have a lot of information about different seizure disorders and their treatments. They have a listing of all the local chapters all over the United States.
When Dusty was first put on medicine he was having 30 series of infantile spasms a day. That is a lot! He went this way for months at a time. His body finally had enough and he just went into one big long seizure he went what they call status on us.
The doctors when they saw him in the emergency room knew what was happening and acted quickly to stop his seizure. They did a lot of testing and finally found out what was happening to him he had seizures. Finally we knew what we were dealing with.
There were lots of trails on many different medications and several hospitalizations and almost loosing Dusty on several occasions over the last 32 years. Now we have him in a place where we can start back on a full Ketogenic diet and hopefully regain seizure control.
Come along with us on this journey towards being healthy and seizure free.
I have put a lot of links to websites that have more information on seizures, Tuberous Sclerosis, and Autism. I have also added the link for The Charlie Foundation they also have a lot of wonderful information about the ketogenic diet.
I found knowledge from a lot of books over the years. Some of them are classics now but their information is timeless. I first started my journey on helping Dusty by learning about food allergies and I have several books I highly recommend to anyone that is dealing with food allergies.
They are full of all kinds of information that can help you. There are elimination diets to work through and it explains exactly how to do the diet. When you have so much to deal with sometimes having a step by step to go by is a godsend!
My family and I wish you all the best on your journey! If you have any questions please feel free to reach out to me at firstname.lastname@example.org
I would love for you to tell me about how your journey is going. We all need to stick together and help each other the best way we can.
I leave you with this scripture, it has gotten me through some pretty dark times and I hope it will help you too.
“What is impossible with men IS possible with God” Luke 18:27
Never give up my friend! God will never give up on you or your child. Look for success in the smallest of things and there you will find hope.