My Beautiful Boy And His Autism Story.
First let me say that this is my story. Not everything in here has/will work for everyone. I just wanted to share our experiences thus far.
So let me put this out there. I have a beautiful little boy, Matthew, who was diagnosed with Autism last year. It has been quite a rollercoaster of a year with emotions, dealing with doctors and dealing with ignorant people.
Let me start at the beginning. My beautiful little sunshine, yes that's what I really call him, was developing fine all through his first year. At about 16 months, he stopped talking, stopped responding to his name, stopped playing with his twin sister, and would sit there and yell. I brought him to the doctor's, obviously very concerned about all of this. His pediatrician at first wouldn't do anything for him. He told me that there was nothing wrong with him and that he was doing all of this because he was a boy and boys are lazy. Who says that shit still in this day and age?? Anyway, after months of complaining and bitching at the doctor, I finally got him to refer us to the children's centre for speech therapy because at age 2 he still wasn't saying anything. We got into the centre and they did an assessment. The woman told me that she thought that Matthew was displaying many signs of autism and that was likely the issue to his problems. I left that day and cried trying to figure out why this lady felt the need to lable my kid. All he needed in my opinion, was speech therapy. Yeah De-nial isn't just a river in Egypt! When I told the pediatrician that's what they thought, he told me that they just like to say that so people can get help faster.
Four months later we finally got out initial appointment with the speech therapist (SLP). We met with her and an Occupational therapist (OT) on a Friday and after an hour assessment, they also told me that they thought he was autistic. So by this point I was completely irritated, cause who the hell are they to tell me that there is something wrong with my kid. Who cares if he likes to play on his own? Maybe that meant he liked his space. Who cares if he sat and spun the wheels on cars for hours? It just meant he wanted to be a mechanic...right? YEAH! So I turned to the two therapists and asked them very politely, "Who the fuck do you think you are? I came here for you to help him talk not so you could try to find some label to stick on him because that's what you like to do." (Cause that's what the pediatrician said) Not so much on the subtle side...I know.
So I went home that night and googled "Autism" to find out why the hell they thought he fit under this. He wasn't sitting in the corner and rocking, how I had pictured all autistic kids to be. Well, on my search red flags started to go up everywhere. No eye contact, not answering to his name, isolating himself, not wanting to be held, throwing himself into walls/the floor/furniture, altered speech. I sat at the computer and cried. The therapists were right. That weekend, I mourned the idea of my "perfect" boy. I was so scared at what the future would hold. On Monday I called the SPL back and apologized for my rant on Friday and told her that I thought she was right. She told me that I was the fastest turn around they had from a parent in a long time. She brushed off the rant and immediately made appointments for him to begin therapy.
That night, as if something knew I was going to be going through this, Jenny McCarthy appeared on Oprah to talk about her book .."More than Words." Now before anyone goes off. I know that many don't like her for what she's doing. But really, all she is doing is telling her story of her son's struggle and trying to get the governments to listen so that maybe they could help alleviate some of this epidemic. Who cares if you don't like her as an actress? As long as there is someone out there who can get the word out that these children need help and that there are things that can be done to help them, that's all that matters.
Back to my story.... I watched the show and balled my eyes out watching Matthew sitting at the far end of the room, his sister trying to get him to play with something and him completely ignoring her. Here was this lady on tv who went through what I'm already feeling. Needless to say, when you meet other parents of Autistic kids, you instantly feel some sort of connection. Doing research some more, I read that Naturopaths had helped some people. So the next day, I searched the yellow pages and picked a number of one of the dr's. As I called to make the appointment, the secretary asked if I knew that he was the naturopathic doctor in our area that dealt with these kids. Again, something led me there. It just so happened that there was a convention that weekend coming up on the biomedical approach to autism and he set us up to go. While I was there, we connected with at least 40 other sets of parents who all explained the gluten-free, casien-free (GFCF) diet to us. They told us stories about how they saw huge leaps in thier kids once they started them on this. See the gluten and casien in foods act like a morphine substance in their bodies which is what causes some of them to be in a trance like state. I was also told that it didn't work for all kids and that Matthew might fall under that category. I thought, what the hell it's worth a shot. I spoke to the naturopath who thought it was a good idea to start him on this. He gave me the guidelines to follow and off I went. Within the first 3 weeks, there was a difference. One day he woke up and came to my room and called "Mama." I thought my heart was going to explode. Here was my silent little boy calling my name. I purged the house of all wheat products and only kept the necessary dairy products my daughter needed. If this is what happened in 3 weeks, I couldn't wait to see what happened in 3 months.
A month and half passed and I will never forget that night. It was November 15, 2007, I was tucking him into bed and said my usual, "Good night Matthew, I love you." and out of nowhere he says "nigh mama I lo you" I hugged him so tight and cried. My baby finally told me that he loved me and I waited 2 yrs and 9 months to hear it.
He went to Speech and OT weekly and I had my list of things to work on with him in between. The progress this kid made in such short time boggled all of us. January 2008 we were told that we got our appointment to see the doctor who does all of the official diagnosis'. Our appointment was set for May 2. It was the longest wait of our lives. We just kept up with helping him with anything we could. By March, he was already starting to read. Here was my just 3 yr old, reading the guide off the tv for us. We not sure how he did it but he learned!
May 2 was the appointment with the doctor. Being the initial meeting, it was just my husband and I talking to her about him. She gathered all her info and we were to take him back to see her in 3 weeks.
May 23, my birthday, we took him to his appointment and after spending 45 min with him, (and him reading her a story!) the doctor looked at us and said, "I'm really sorry but your son has mild high-functioning autism." I told her not to apologize and I thanked her. When we left the office, I cried. I already knew he was so that wasn't the reason. It was because now I knew I wasn't crazy and that there was something that was off the whole time. Could you imagine if I listened to his pediatrician in the beginning and didn't fight for something to be done?
My little sunshine just turned 4 last month and is the most amazing kid I know. There is not one bad/malicious bone in him. He loves to give hugs and kisses now. He wakes me up in the morning with "Mommy I missed you" and "I love you" as he kisses my face. He plays imaginary games with his sister (who I have to add is the best sister a kid could ask for. Always trying to help him where she can.)
I am so proud of the little boy that he has become. The fear still remains as to the unknown of what the future brings but at least I know that with all the love and support around him, he will make it just fine.
Here is a beautiful poem by Emily Pearl Kingsley about having a child with unexpected challenges...
Welcome to Holland
Emily Pearl Kingsley
When you're going to have a baby,
It's like planning a fabulous trip to Italy;
You buy a bunch of guidebooks and make your wonderful plans-
The Coliseum, Michelangelo's David, the gondolas in Venice-
You may even learn some handy phrases in Italian.
It's all very exciting.
After all the months of eager anticipation,
The day finally arrives.
You pack your bags and off you go
Several hours later, the plane lands,
The stewardess comes in and says
"Welcome to Holland".
"HOLLAND!?" you say. "What do you mean, Holland?
I signed up for Italy.
I'm supposed to be in Italy.
All my life I've dreamed of going to Italy".
But there has been a change in the flight plan.
The important thing is
That they haven't taken you to a horrible, disgusting, filthy place
Full of pestilence, famine and disease.
It's just a different place.
So, you must go out and buy new guidebooks.
And you must learn a whole new language.
And you will meet a whole new group of people
You would never have otherwise met.
It's just a different place.
It's slower paced than Italy;
Less flashy than Italy.
But after you've been there for a while
And catch your breath,
You look around and you begin to notice
That Holland has windmills;
Holland has tulips;
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy,
And they're all bragging about the wonderful time they had.
And for the rest of your life you will say
"Yes, that's where I was supposed to go;
That's what I had planned".
The pain of that will never, ever go away,
Because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact
That you didn't get to Italy,
You may never be free to enjoy
The very special, the very lovely things about Holland.
So let me put this out there. I have a beautiful little boy, Matthew, who was diagnosed with Autism last year. It has been quite a rollercoaster of a year with emotions, dealing with doctors and dealing with ignorant people.
Let me start at the beginning. My beautiful little sunshine, yes that's what I really call him, was developing fine all through his first year. At about 16 months, he stopped talking, stopped responding to his name, stopped playing with his twin sister, and would sit there and yell. I brought him to the doctor's, obviously very concerned about all of this. His pediatrician at first wouldn't do anything for him. He told me that there was nothing wrong with him and that he was doing all of this because he was a boy and boys are lazy. Who says that shit still in this day and age?? Anyway, after months of complaining and bitching at the doctor, I finally got him to refer us to the children's centre for speech therapy because at age 2 he still wasn't saying anything. We got into the centre and they did an assessment. The woman told me that she thought that Matthew was displaying many signs of autism and that was likely the issue to his problems. I left that day and cried trying to figure out why this lady felt the need to lable my kid. All he needed in my opinion, was speech therapy. Yeah De-nial isn't just a river in Egypt! When I told the pediatrician that's what they thought, he told me that they just like to say that so people can get help faster.
Four months later we finally got out initial appointment with the speech therapist (SLP). We met with her and an Occupational therapist (OT) on a Friday and after an hour assessment, they also told me that they thought he was autistic. So by this point I was completely irritated, cause who the hell are they to tell me that there is something wrong with my kid. Who cares if he likes to play on his own? Maybe that meant he liked his space. Who cares if he sat and spun the wheels on cars for hours? It just meant he wanted to be a mechanic...right? YEAH! So I turned to the two therapists and asked them very politely, "Who the fuck do you think you are? I came here for you to help him talk not so you could try to find some label to stick on him because that's what you like to do." (Cause that's what the pediatrician said) Not so much on the subtle side...I know.
So I went home that night and googled "Autism" to find out why the hell they thought he fit under this. He wasn't sitting in the corner and rocking, how I had pictured all autistic kids to be. Well, on my search red flags started to go up everywhere. No eye contact, not answering to his name, isolating himself, not wanting to be held, throwing himself into walls/the floor/furniture, altered speech. I sat at the computer and cried. The therapists were right. That weekend, I mourned the idea of my "perfect" boy. I was so scared at what the future would hold. On Monday I called the SPL back and apologized for my rant on Friday and told her that I thought she was right. She told me that I was the fastest turn around they had from a parent in a long time. She brushed off the rant and immediately made appointments for him to begin therapy.
That night, as if something knew I was going to be going through this, Jenny McCarthy appeared on Oprah to talk about her book .."More than Words." Now before anyone goes off. I know that many don't like her for what she's doing. But really, all she is doing is telling her story of her son's struggle and trying to get the governments to listen so that maybe they could help alleviate some of this epidemic. Who cares if you don't like her as an actress? As long as there is someone out there who can get the word out that these children need help and that there are things that can be done to help them, that's all that matters.
Back to my story.... I watched the show and balled my eyes out watching Matthew sitting at the far end of the room, his sister trying to get him to play with something and him completely ignoring her. Here was this lady on tv who went through what I'm already feeling. Needless to say, when you meet other parents of Autistic kids, you instantly feel some sort of connection. Doing research some more, I read that Naturopaths had helped some people. So the next day, I searched the yellow pages and picked a number of one of the dr's. As I called to make the appointment, the secretary asked if I knew that he was the naturopathic doctor in our area that dealt with these kids. Again, something led me there. It just so happened that there was a convention that weekend coming up on the biomedical approach to autism and he set us up to go. While I was there, we connected with at least 40 other sets of parents who all explained the gluten-free, casien-free (GFCF) diet to us. They told us stories about how they saw huge leaps in thier kids once they started them on this. See the gluten and casien in foods act like a morphine substance in their bodies which is what causes some of them to be in a trance like state. I was also told that it didn't work for all kids and that Matthew might fall under that category. I thought, what the hell it's worth a shot. I spoke to the naturopath who thought it was a good idea to start him on this. He gave me the guidelines to follow and off I went. Within the first 3 weeks, there was a difference. One day he woke up and came to my room and called "Mama." I thought my heart was going to explode. Here was my silent little boy calling my name. I purged the house of all wheat products and only kept the necessary dairy products my daughter needed. If this is what happened in 3 weeks, I couldn't wait to see what happened in 3 months.
A month and half passed and I will never forget that night. It was November 15, 2007, I was tucking him into bed and said my usual, "Good night Matthew, I love you." and out of nowhere he says "nigh mama I lo you" I hugged him so tight and cried. My baby finally told me that he loved me and I waited 2 yrs and 9 months to hear it.
He went to Speech and OT weekly and I had my list of things to work on with him in between. The progress this kid made in such short time boggled all of us. January 2008 we were told that we got our appointment to see the doctor who does all of the official diagnosis'. Our appointment was set for May 2. It was the longest wait of our lives. We just kept up with helping him with anything we could. By March, he was already starting to read. Here was my just 3 yr old, reading the guide off the tv for us. We not sure how he did it but he learned!
May 2 was the appointment with the doctor. Being the initial meeting, it was just my husband and I talking to her about him. She gathered all her info and we were to take him back to see her in 3 weeks.
May 23, my birthday, we took him to his appointment and after spending 45 min with him, (and him reading her a story!) the doctor looked at us and said, "I'm really sorry but your son has mild high-functioning autism." I told her not to apologize and I thanked her. When we left the office, I cried. I already knew he was so that wasn't the reason. It was because now I knew I wasn't crazy and that there was something that was off the whole time. Could you imagine if I listened to his pediatrician in the beginning and didn't fight for something to be done?
My little sunshine just turned 4 last month and is the most amazing kid I know. There is not one bad/malicious bone in him. He loves to give hugs and kisses now. He wakes me up in the morning with "Mommy I missed you" and "I love you" as he kisses my face. He plays imaginary games with his sister (who I have to add is the best sister a kid could ask for. Always trying to help him where she can.)
I am so proud of the little boy that he has become. The fear still remains as to the unknown of what the future brings but at least I know that with all the love and support around him, he will make it just fine.
Here is a beautiful poem by Emily Pearl Kingsley about having a child with unexpected challenges...
Welcome to Holland
Emily Pearl Kingsley
When you're going to have a baby,
It's like planning a fabulous trip to Italy;
You buy a bunch of guidebooks and make your wonderful plans-
The Coliseum, Michelangelo's David, the gondolas in Venice-
You may even learn some handy phrases in Italian.
It's all very exciting.
After all the months of eager anticipation,
The day finally arrives.
You pack your bags and off you go
Several hours later, the plane lands,
The stewardess comes in and says
"Welcome to Holland".
"HOLLAND!?" you say. "What do you mean, Holland?
I signed up for Italy.
I'm supposed to be in Italy.
All my life I've dreamed of going to Italy".
But there has been a change in the flight plan.
The important thing is
That they haven't taken you to a horrible, disgusting, filthy place
Full of pestilence, famine and disease.
It's just a different place.
So, you must go out and buy new guidebooks.
And you must learn a whole new language.
And you will meet a whole new group of people
You would never have otherwise met.
It's just a different place.
It's slower paced than Italy;
Less flashy than Italy.
But after you've been there for a while
And catch your breath,
You look around and you begin to notice
That Holland has windmills;
Holland has tulips;
Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy,
And they're all bragging about the wonderful time they had.
And for the rest of your life you will say
"Yes, that's where I was supposed to go;
That's what I had planned".
The pain of that will never, ever go away,
Because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact
That you didn't get to Italy,
You may never be free to enjoy
The very special, the very lovely things about Holland.