Autism: A Parent & Child Journey
My Journey To Help My Autistic Child
At the age of 5 my son was diagnosed with autism. For at least 3 years prior, we knew something was different. Unfortunately, the doctors continuously dismissed our worries.
This is my story, not just about autism and my son, but about us as a family. About what it really meant to accept his "differences". What we as parents did to help our son. And in the end, what each child with a disability really deserves.
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Autism & Me
You are probably wondering why the introduction to this lens does not start with "about autism" or about "my child, autism, the hardships, the nightmare"....but instead, about "autism: a parent & child journey". Well, let me tell you why it's about "a parent & child journey".
At the age of 5, my son was diagnosed with autism. I remember so clearly sitting in the doctor's office and tears flowing down my face. I remember the look on my husband's face as the doctor spoke to us about the many things we would need to do. And I remember looking at my happy child exploring the doctor's office without any worries or knowledge of what we were being told about him.
This lens is not just about my son's autism and what the doctors and therapists thought we should do. This lens is about ME and what I as a parent did to help my son. What wore me out for years, the ups and downs that we as parents experience. And at the end what I learned about me.
I am not a doctor. I am not a medical researcher. I am not a therapist. I am not a school official. I am not a psychologist or psychiatrist. I am the mom of an awesome and unique child and this is my view and my experience.
Autism: The "diagnosis"
The wonderful doctor who spoke to us gave us a list of things she wanted us to do. This is how it all began:
- you will need to have these blood tests run to check X, Y, Z
- he needs to have an MRI done
- he needs to have an EEG done
- Here is a list of foods that many kids are allergic to and I want to you start taking some of them away for a week. After a week reintroduce them and see if you see any change in his health, behavior, etc., remove the food until we get all test results.
- When he has a tantrum, try to hug him instead of getting upset. More than likely he is feeling horrible and cannot express it to you. Sometimes allergic reactions to food and other things can cause these symptoms, and he cannot control it.
- Here is the name and number of a neurologist I want you to see
- Here is the name and number of a geneticist I want you to see
- Here is the name and number of a developmental pediatrician I want you to see
- Here is the name and number of an endocronologist I want you to see
- Here is the name and number of a place to get his hearing checked
- Here is the name and number of a place to have is speech evaluated
- and most importantly
- TODAY on your way home, stop by the video store and rent "Lorenzo's Oil". You and your husband will sit tonight and watch it no matter what other things you have to do. You must make time to watch this movie tonight. Promise me that you will do so.
- After an hour of talking with the doctor, we left her office.
After The Autism Diagnosis
the long ride home & the rest of the day
We left the doctor's office for what was normally a 20 minute ride to our home. My husband and I did not talk much. All I could do was wonder..."What am I going to do now? What does this mean? Does it mean that I have done something wrong? How could I have failed my son? Was it because I was working so hard to provide for our family that this happened to my son? Was it the stress I experienced during my pregnancy because of work and my husband's family that led to this?" And while all of these questions went through my mind, all I could do was wipe the tears that ran down my face.
My husband on the other hand was speechless. There did not seem to be anything he could say. He finally said, "are we going to get that movie the doctor said?" and of course I replied "yes, there's a video store close by the house, let's go pick it up...I'm not sure what the purpose is, but maybe it will get our mind off this for a bit". So we stopped by the video store, picked up the movie and drove home.
Later that evening, as our son was quietly playing, I put the DVD in the DVD player and called my husband to watch the movie with me. At the beginning of the movie we were both a bit confused...as the movie went on, my husband got up and told me he could not watch it anymore. I just watched in disbelief with tears flowing down my face. I told my husband, we must watch it. There had to be a reason why the doctor told us to watch it. And so we finished watching the movie. At the end, we were both a bit confused but most of all worried.
Be Inspired: A Story Of Hope - it was recommended by my son's pediatrician
I will forever be thankful to our wonderful pediatrician who took care of not just our son, but us as parents as well by suggesting, actually almost demanding that we watch this film. It is because this movie that everyone we know is in awe of the progress our son has made.
Although there have been many who claim this movie is about autism, and of course, many who claim it is not, I cannot help but feel that it was this movie that changed my perspective on what "we" as parents needed to do. It was this movie who throughout this long and sometimes difficult and exhausting journey gave me the will to continue looking for answers, not blame. It was this movie who has helped me tremendously as others told me to "just trust the doctors", while I knew in my heart that I could do more than I was being told. And I truly hope that every parent of a child with autism, or any other disability for that matter, watch this great film.
After The Autism Diagnosis
the morning after
As I woke up, I began making calls to the insurance company, doctors, etc...to make appointments for the numerous tests that the doctor had told us our son would need. Over the next few weeks it seemed that there was nothing we did that was not directly related to talking to a doctor, going to a doctor or following a new doctor's orders.
The more calls I made, the more appointments we attended, the more I worried. For months I would work full time during the day, take time out for doctor visits with my son and then once everyone was asleep, I spent hours on the internet trying to learn as much as I could about autism. For months I slept 2-3 hours maximum per night. It seemed all my time was consumed by doctors, dealing with the insurance company, working, taking care of my son and last, cleaning and doing everything every other parent must do on a daily basis.
My Autism Research
My real autism research began after being tired of running from doctor to doctor, none of which had much more to say except "well, he also has ADHD and you should medicate him...and well, he also has OCD, ODD...and oh so many other things..." And I remembered "Lorenzo's Oil"...and I thought "I have to do something NOW...I can't wait for others to tell me what I need to do...I need to find a "cure" for my son NOW!" So I read every article related to autism...each and every one which seemed to be full of doom and gloom...and if not full of doom and gloom, full of blame towards everyone except the parents. And those who seemed to be actually trying to help my child, well, they were full of expensive treatments and therapies...none of which were covered by insurance at the time. Some were "your son can't ride a bike because he needs this type of therapy, we have the answer for you..." others were full of "give them this expensive food and your son will be fine..." And I must admit, that "some" of the treatments we could do, that we could actually afford, worked. But then there were the:
1. craniosacral therapy
2. hbot therapy
3. tomatis therapy
and so many more...none of which we could afford. Not because we were not parents who would not spend money on treatments to help our son, but because doing so meant that we would lose the roof over our heads.
And then, when I least expected it, I ran into a website called "wrongplanet.net". It is a website about asperger's & autism. But it is actually a site where people, all with autism & asperger's talk about their differences, what would have helped them, how they felt and "our" life changed forever.
I thought..."why am I getting so much information from doctors and people who are not autistics, instead of people who actually ARE autistic? How can someone without autism tell me how a child with autism should be treated? How can they tell me how my child feels more than someone who is actually autistic?" And I began to ask for their advice. I began to read about their lives. And I began to accept that my child was different. Autistic by some, but really just different. And so my perception of doom and gloom changed even more.
Please read this. I just read this today
and it hit home.
I took Parlodel for years
and was told by my OBGYN
that I could continue to take it
even after being pregnant.
I did not continue to take it,
but I wonder if the damage
was already done.
From Science Daily
Low IGF and Autism
The Dr. & Autism Burnout
After 4-5 months of constant doctor visits, tests, dealing with insurance companies plus having to deal with the normal responsibilities of running a household, I was getting worn out. More than anything I realized that the previous 4-5 months, the time with our son was mostly dedicated to taking him to a new doctor or having yet another medical test done. At this time I stopped and thought "why are we doing all of this? Isn't he the same kid now as he was before we ever received the diagnosis? What kind of life is it to live from doctor to doctor for a 5 year old child?"
Awakening From Autism: Escape To Disney
During my research I read someone's blog who talked about how their autistic child who was non-verbal immediately attempted to speak when they visited Disney. They claimed that because the child was so excited they just started talking. So with that information I sat at my computer, checked the Disney site and without saying a word to my husband booked a trip for 4 to Disney. Staying at the Animal Kingdom Lodge, not just some little motel to save money. In fact, because I knew that all the running around at Disney would wear him out, I picked this hotel because it seemed to be the quietest one. No Disney characters constantly running around, but instead a slightly dark lobby with great natural scenery around the hotel. I was tired of the doctor visits and I felt my son also needed a break.
Then I read about all the things I should do if I took my child with autism to Disney.
1. take your diagnosis and you'll get a "handicap" pass so you don't have to wait in line
2. get a child "leash"
3. make sure that there is gluten free food, Disney will work with you
And so much more...
But because I remembered what the autistics at wrongplanet said, I decided I would do none of the above. Instead, I downloaded his favorite Disney music on his MP3 and took it with us. The first day at Disney I did not let him pick a ride, instead I picked the ride with the shortest line. As soon as we got in line, I put the headset on my son and turned on the MP3. That line was only about 15mis. He patiently waited with us for his turn.
Then the next ride, I picked a ride with a line a bit longer and again, I put the MP3 on. For the next 2-3 days at Disney, every line we made was specifically selected by me based on the wait time. Each line being a bit longer.
By the end of our trip, 5 days later, my son patiently waited 1 1/2 hrs in line with his dad without even the MP3. No "front of the line" pass required.
And at that point I realized that my son was different, but that my job was not to make him be someone he was not, and it was also not to make people give him a free ride because of his behavior. My job was to teach him to be an adult , not just a 5 yr old. You see, with developmental delays, your kids learn things a bit later. At the end of the day, my purpose was not to make my son be an awesome kid, but instead, for him to be an awesome adult. If I spent all my time making excuses for his behavior or only focusing on teaching him how to "play well with kids, fit into little peer groups", then by the time he learned that, I might not have time to teach him to be an adult. That does not mean he did not have time to be a kid. It does not mean he wasn't exposed to playing with children or doing kid things, it meant that I could not only focus on that.
Sensory Issues & Sensory Issues - the best gift we ever gave our son!
Many times, if not all the times, we went to the grocery store or mall, our son would end up having a major tantrum. I remember once being in a store at the mall and him literally pulling clothes from the hangers. We reprimanded him and left the mall. Even when we told him that he was in trouble or was going to time out if he did not behave, he did not care.
One day my husband and I were talking about how sometimes he did so well at stores and others he just seemed to lose it. And as we talked I told him; "when we go to Costco he never does this..." and that's when a lightbulb went on. I wondered then if it was because there was so much noise at the mall or grocery store that he did this vs. at Costco which normally did not have overly bright lights and was normally not as crowded. So I went out that same day and purchased this MP3 for him (actually his was Cars - his favorite at the time, but this same brand & style) and loaded it with a few of his favorite songs.
This was one of the best purchases we ever made for our son. From trips to the mall, to going out to eat, to Disney, we always took this with us for those times when we felt our son was becoming overwhelmed or when we needed him to be calm at a restaurant, etc. It worked like a charm. Once we even went out with our neighbors to a very nice restaurant and they told us "you see, you say your kiddo won't stay still at a restaurant, yet he hasn't even moved here...he is being better than all the other kids here!" My husband and I just smiled. For the first time in years we could actually go out to eat without having to run out of the restaurant because our son was overwhelmed.
From Disney to Today
After our Disney trip I decided I would do whatever it took to help my son. I could not only rely on doctors or therapies. I needed to take action, I needed to learn as much about autism, as I needed to learn about my child. I also needed to find ways to help him at home, and not depend on therapies to help him. I was not going to allow my son to not thrive because I had to spend countless hours battling insurance companies, attempting to figure out how to pay for therapies that were too expensive for most to pay. I had to figure out what we could do, with what we could afford, to help him. If the therapies and insurance companies at one point agreed and thus I was able to provide those at a reasonable cost, great. If not, I had to continue doing whatever I could, within our resources to help him.
So many times I heard parents say "we haven't had this done because the insurance company won't pay" or "we are waiting for X therapy to start, but so far we have not been able to get those therapies started because the school or doctor or insurance haven't approved them".
And with that, I realized that I could not allow someone else to dictate how much my son could improve. I had to find alternate ways to help him that were within what we could afford. And that's exactly what I did.
Our Inexpensive Autism Home Therapy
Here are some of the toys we purchased to help our son. Not because any doctor told us to go and purchase them, but because as we went about our daily lives, each day watching our son more and more, trying to figure out what he liked and did not like, we began to realize that maybe if we had some of the things he liked in our home, it would help him feel calm.
I have written about how each helped my son individually.
We purchased this and hung it in his room. The first day we were in awe as a child who normally would not sit still for more than a few minutes, actually sat swinging for over an hour while watching a movie. We kept checking in on him because we could not believe he was actually still calmly sitting on this swing chair. For the first time in over two years we as a couple were able to sit and watch a TV show without having to run around our entire house chasing our son.
One day we went to the park and instead of sitting on the swings, he played with the sand. So out we went and purchased this sandbox. We placed it in our backyard with a few sand toys. He would sit calmly in the sand and play for hours with his toys. When we would approach him, he would actually attempt to play with us vs. what he had done before which was keep us at a distance.
We knew our son loved the water, as he loved taking a bath and also loved swimming pools, the beach, etc. So we purchased this which we had inside our home for days when he could not go out to play in his sandbox. We put some towels on the floor and he would play in this water & sand table for hours.
I read on the internet about occupational therapy & physical therapy and how these "trampolines" were used for kids with autism. Well, I could not really have a trampoline inside our house, so instead we purchased this bounce house. This was in our living room for almost a year and my son used it almost daily.
Take time out for yourself!
DOES affect your child...
"Life is Good" Room For Our Autistic Son - helping with autism meltdowns
Once we figured out that many of my son's tantrums were directly related to him becoming overwhelmed or over stimulated, I began to make a room that was just a quiet room. We purchased a water fountain, thick mats, some musical instruments (all those I have included below) and made a huge "Life is Good" poster with a smiley face for the wall.
Anytime any of us felt overwhelmed, we would tell our son "come on, let's go to our Life is Good room". We would dim the lights, turn on the water fountain, play some classical music or hemi-sync cds and lay down on the mats. Sometimes we just did breathing excercises, pilates or yoga, just stretched and sometimes we just laid down and closed our eyes. After a couple of weeks, our own son would grab our hand when he was overwhelmed or when he felt WE were overwhelmed and he'd take us to his "Life is Good" room and tell us "take a deep breath...lay down". It was definitely an inexpensive way to relax for all of us and instead of medication, we taught our son how to calm himself down and how to recognize when he was being overstimulated.
we're floating in the water
and floating in the water...
sleeping & "floating in the water"...
Our son always had a tough time winding down at bedtime. We had tried reading books, taking the TV out of his room, purchasing calm videos to watch at night, putting him in bed and closing the door, but nothing seemed to work. He would only go to bed after hours and hours, and normally, I was the one who wound up staying up late with him.
One day, after I read to him, I decided to put down the books and told him to close his eyes. I told him we were going to imagine that we were "floating in the water", as he loved the beach. So I began saying in a very calm voice the following:
First we relax and we close our eyes.
Then we wiggle our toes.
Now we wiggle our fingers.
And now we're ready to start floating in the water.
And as we float in the water, we can hear the birds singing...
and we continue floating in the water...and floating in the water...
and we feel the wind blowing on our face...and we continue floating in the water...
And I continued making up things as they came to mind. Within 5 minutes my son was asleep! I was in immediate shock, as I had tried for so many years every other option that was ever given to me by doctors. None of which seemed to work. I immediately went and told my husband who was also in awe.
The next day? We did the same thing. Even my husband decided to join us in my son's bedroom. Yes, my husband fell asleep too! After a few weeks of doing this, which worked like a charm, I would tell him to go to sleep and he would alone start saying...
"and we wiggle our toes...and we wiggle our fingers...and we're floating in the water..."
Until he would go to sleep.
update 9/1/2011 - I found this today and thought I'd share...it explains why this worked so well.
the world won't change
for your autistic child...
accept his differences
and help him shine!
How To Help Your Child With Autism
this is what I want for you & your family
I want you to understand that not all doctors have all the answers. I want you to understand that you cannot wait for schools, doctors & insurance companies to determine what is best for your child. Today you must begin to watch your child, you must begin to take note of what makes him "tick". Find ways to help them deal with their daily struggles. You are the parent. You do know your child better than anyone.
Although it is okay to explain to some why your child acts a certain way, if what the child does is not acceptable in society, ie. tantrums, running in a restaurant, etc. you must teach them through gentle methods how he or she should act. This can always be done in calm and fun ways. It does not have to be a punishment. Rather, it should be a "check out what those kids are doing...that's not really nice...you should do this instead...people will think you are awesome if you do this instead."
Carly's Voice - Breaking Through Autism
There is nothing more beneficial for a parent whose child has autism than to "listen' to what other kids with autism feel and need. This book just came out and Carly is an inspiration to us all. She is also many of our kid's voice! I just purchased this book and can't put it down. It is an amazing story of triumph and one that every parent of a child with autism needs to read.
Best Autism Social Skills Book - my son's favorite and mine too!
There is also a Social Skills Picture Book for High School and Beyond.
This is without a doubt my son's favorite book for learning social skills. Actually, he doesn't see it as a chore to read, but instead begs me to read it with him. He has learned so much from this book, especially when it comes to playing with other children. It's filled with great real life scenarios & pictures in a "what not to do" and "what to do" type format.
This great design is from free think.
This design available on tees, other great designs available on a variety of items.
Communication Is Key For Kids With Autism - what helped my child and can help yours too!
One of the most difficult issues we faced was not being able to communicate with our son. Communication was one of the most important issues for us as parents, as we believed this was essential for our son's future. We were fortunate enough to find an amazing speech therapist that worked with our son and twice a week I would sit, watch and listen while she helped our son improve his language skills. We did not wait for the school to provide our son a couple of 30 minute group therapies a week, instead, we privately paid for two hours of speech therapy per week. It was the best investment we ever made. In addition, by being present during the therapies, we were able to gain the knowledge to help our son at home. The therapist not only worked with our son, but helped us help our son at home. I believe this was essential in his improvement.
In addition, while he was in therapy, I decided that we needed a way to communicate with him somehow. I always had a stack of white paper and pencils in our home. When I spoke with my son and felt he did not understand me, I drew a picture for him. After a while, when our son wanted to express his feelings, he would grab a sheet of paper and make drawings. I would then take the drawings and sit with him telling him what "I" thought the drawings meant. Sometimes he would get angry and draw another picture, sometimes tears would run down his face as it seemed he felt I understood him. It was something that helped our relationship greatly and something we still do today.
Because English was my son's primary language, we concentrated on him learning English vs. Spanish which was spoken in our country. However, slowly I also introduced him to Spanish through many games. We used the website Spanish Toys to get many video games, etc. in Spanish as normally only English games are available at local stores and most online retailers.
Great Visual Educational Resources - for the autistic visual learner
Before our son was diagnosed, he started kindergarten in a private school. Unfortunately, that only lasted two weeks. At two weeks, the teachers and school officials told us that they could not help our son and thus they felt he would be better served at an alternate school. Instead, we decided to homeschool him for kindergarten until we could get a diagnosis and appropriate services. With this, I focused on "teaching him" the way he needed. He is a visual learner, so these are some of the items that we have used that were crucial to him loving to learn, in addition to assisting us with improving his vocabulary skills.
5 years later, my son still loves these DVDs. We love them too!
Leapfrog is truly amazing. These DVDs were great and so were the other Leapfrog items for electronic games made by them.
This we got for him about 3 years ago. He has learned so much. I know many do not believe in videos for our kids, but when you have a visual learner, videos do an amazing job.
This was our first Melissa & Doug puzzle. We have also used the US Map, World Map & Human Body puzzles. They are great huge puzzles and excellent quality. It gets your child interested in learning in a very fun way.
5 Years After The Diagnosis
I am happy to say that our son is now a very well-behaved kiddo. We are fortunate enough to have found apartments that are truly the perfect place for him to live in. They are gated, it is a small community and thus all the neighbors know each other and each other's kids, there is little danger as the kids play in the sidewalk, basketball courts, playgrounds and pools that run through the middle of the complex, ie. buildings on both sides of the sidewalk, thus no cars around.
After only two weeks of moving here, we were known as "Gabe's parents". My once not so social kid, is now a social butterfly. Yes, he is still different. Sometimes he likes to be alone, sometimes he walks alone, but many times he is running around with other kids and playing with them, which we could not have imagined 5 years ago.
His speech is still a bit delayed, especially since he is now in a country in which English is not the primary language, however, he is learning and trying really hard to improve his English, as well as the local language all on his own and doing a pretty good job too!
Autism: Then & Now - My Autistic Son At Age 5
- Did not play with others.
- His vocabulary was at that of a 1 1/2 year old. Did not understand yes & no.
- Was fully potty trained just a few weeks before kindergarten started.
- Had tantrums at most stores, where we would have to leave.
- Would walk out of our home, although every door had child-proof locks.
- Could not ride a bike.
My Awesome & Unique Son At Age 10
- Is a social butterfly...knows everyone where we live.
- His vocabulary is still not at a 10 yr old's level, but has improved to an 8 yr old's level.
- Never has tantrums. When upset, he counts to 10 & takes 3 deep breaths on his own.
- Walks around our apartment complex unsupervised and comes home to check in.
- Loves his bike, skateboard, is a great swimmer & thinks he's a surfer!
Your autistic child
will always be different.
Celebrate his uniqueness!
What "I" Believe Causes Autism
In my view and from my personal experience, autism is not only caused by vaccines or food or heavy metals. It is also not just a genetic "disease". I believe that autistics have existed for many years. I also believe that as our world has become more hectic, as our food has become less healthy, as we are given more antibiotics and vaccines, people who are "different", those with allergies, with weak immune systems are pushed over the line. Pushed over the thin line that separates "different & unique" to "different, unique and disabled". One that damages speech, one that damages hearing and many other things. These things would not occur if the child was "healthy or neurotypical". But our medical, school & government's unwillingness to treat each person as an individual has failed many awesome individuals.
Autism: What You Didn't Know - great sites, scientific studies and a different perspective
- Wrong Planet - Autism Community
- Estee Klar - Has Our Autism Doomsday Arrived?
- Science Daily - Gut Bacteria Linked To Behavior
- Science Daily - Autism: Exceptional Visual Abilities Explained
- Science Daily - Playing With Building Blocks of Creativity Help Children With Autism
- The Level And Nature Of Autistic Intelligence - link on the right to download the paper
- Absolute Pitch In Autism
Autism & The Marital Relationship
Although many might not agree, it is "my" belief that a child with autism does not mean a marital relationship has more issues. However, the marriage of the parents of a child with autism probably has more problems than others. Why? Not because of the autistic child, but because in "my" personal view, one of the parents is definitely an "undiagnosed" autistic. I have seen this in my own family relationships. In my uncle's relationships. In my cousin's relationships. In my own relationship. It was not until our child was diagnosed and we learned about autism, that a lightbulb went on when I saw so many of my son's characteristics in me! Not only did I see them, but so did my husband. In my search to help our son, I also found out more about me. My willingness to admit that I was "indeed different" and my husband's willingness to understand that some issues we had were not because I wanted to have issues, but because indeed I was different, were actually a blessing for our marriage. Many parents of course do not want to look within for "an autism relationship" with the kids. It is painful to think your child has a "problem" because of you, but the fact is that I am not just about problems, but about some awesome things that I have accomplished in my life as well. This willingness to accept myself, this willingness of my husband accepting me and my "differences", has greatly improved our relationship which is very important for our child.
So make "time" for your relationship. Do not be afraid to work through your issues. Do not be afraid to leave your child with a relative to concentrate on your partner. Do not be afraid to admit that your child has some "issues" because after all, "he so much like you." Be open to this, be thankful to your partner for accepting you for who you are, including your "quirks" and this will only bring you closer.
Be Sure To Read
"You Can't Hate Autism and Expect Acceptance"
I do not mean to imply that doctors, therapists and school officials do not know what they are doing. However, I do know that not all doctors, therapists and school officials know what works for each child. I do know that we as parents can do much more for our children than just relying on others to tell us what to do or waiting for them to act. We as parents must think outside the box and help our kids with or without the help of others. Our children are counting on us.
Our next door neighbor who has seen our kiddo on an almost weekly basis for the last eight months is a psychologist. He was shocked to find out our son was ever diagnosed with autism. Of course, we have three different diagnoses by three different professionals in a two year period. It proves what we have said all along..."Listen to your kids, be their number one fan, focus on their strengths and help them shine. We all need love, a cheering squad and acceptance."