I found this poem right after Little Buddy was diagnosed. It hit me so hard. We had planned for something completely different. We didn't have a clue what we were actually getting into. He was 15 months old and he was receiving: Occupational Therapy, Floor Time Therapy, and Speech Therapy. I was working part time and caring for him full time, again with no sleep.
It was hard most days. He screamed when he wasn't ignoring me. He would bang his head constantly, so I followed him around the house to make sure he wouldn't hurt himself. He never noticed me coming into a room or leaving the room. He was not aware that we were trying to play with him. He was a loving child though. I've met a lot of parents who have children with Autism and they don't even want to be touched. He didn't mind sitting in my lap and sometimes even snuggling.
I didn't have a whole lot of people to talk to either. No one really understood. I had lost a lot of friends over him, because they didn't understand why he acted that way when I went out. I found myself constantly telling people that he was Autistic and what that meant, I mean even the grocery store clerk (lol). You don't know what lonely is until you feel like you are the only one going through it.
I remember telling my family if they couldn't treat him like any other child in the family then they were not allowed to come near us. This was not a disability and we were not going to treat it as one. This was something that needed some special care in certain areas, but overall he was to be treated the same. I remember telling my dad, he cried. I told my mother and she said that she would be there for support when I needed her. (She had raised my brother who was diagnosed with CP.) I am sure some of the other members of my family cried or was angry for me, but I have had the best support from all of them.
Little Buddy turned two and shortly after we went to go see a Developmental Pediatrician. He diagnosed him with Autism on the spot. He had so many characteristics that it didn't take long for the Doctor to see them. I was somewhat relieved again.
I will say that I never minded taking Little Buddy to the Doctors and so on. I could sit there and hear everything they said without being sad or angry. What bothered me the most was reading the reports they would write afterwards. To this day I still cannot stand to read them. It makes it so much more real. It's right there in black and white. I can't change what is said. I just have to sit there and take it. I usually read these when I am alone. I don't want him to see me crying because he has a huge heart and he is very apathetic.
Some of the things we were going through at this moment:
1. He wouldn't touch anything. He would put 2 pairs of socks on his hands and 2 pairs on his feet and take off his clothes, (diaper stayed on ~noy an option). He didn't want anything to touch him and he wasn't going to touch anything either!
2. He was still non-verbal. He would only grunt and scream. This was the only way that he communicated.
3. He was still very picky about eating. We started giving him Carnation Breakfast because most days he didn't want any food. (sensory)
4. By the time he was about 2 1/2 we put him in a special school. I was working part time to help pay for this and they knew how to care for him a little better than a regular daycare.
5. We noticed that he did not maintian eye contact at all and we started working on this! He would need to look at us if he wanted something.
6. I fiqured out he was scared of stickers. I went home and tickled him with tape wrapped on my fingers. He now LOVES tape (can go through a roll in one day) and stickers.
7. We taught him how to pop bubbles! You may be sitting there thinking this can't be hard, evey child loves bubbles, but mine did not. You may also think that this was an easy task, but it isn't for the child that refuses to touch anything!
I am sure there was way more than this...but these were the first to come to mind.
Sunday, February 13, 2011
Welcome to Holland...
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After 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's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have 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 you 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 what a wonderful time they had there. 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.
Written by Emily Perl Kingsley
****Copied and pasted here***
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After 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's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have 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 you 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 what a wonderful time they had there. 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.
Written by Emily Perl Kingsley
****Copied and pasted here***
Wednesday, February 9, 2011
My Son's Story...
This may take a couple of posts. I get asked all the time, "How did you know?". This question always sends me back in time. A wave of emotions come over me and I seem to relive it in the 30 seconds that it takes me to respond. I don't think that I ever want to forget, so I am going to write out his/our story here.
My son (Little Buddy - affectionately named) was born in June. He was perfect! He had ten little toes and ten little fingers. He had a head full of hair (so long that I cut it when got home from the hospital). I thought this was it! I fell in love with him the first time I held him. We brought him home and he began to progress just like any other child. He just didn't sleep very well at night, he did struggle with this a lot. He smiled at me, laughed, rolled over, sat up and even said "Moma". Then out of the blue everything changed.
He began to do little things that most people would think "That is too cool!". I remember he used to lay his blocks out like this: blue, yellow, red, blue yellow and red. If I moved them he would have a fit!!! My Mr. and I were in the living room and I had given our Little Buddy a bowl of cherios. He laid them in a straight line around the table, then proceeded to do this: the first of the set of 3 he ate, the second one went in the bowl, and then he went around again and ate the third one. We just starred at each other in amazement.
He stopped saying: Moma, Dada, hot, bye, hi, bear, and all of the other words he knew. He stopped paying attention to us. He didn't care if I was in the room or not. He started banging his head and screaming! He wouldn't point to what he wanted. He would seek out the sharpest corners in the house and begin to bang his head on them. He would do this if he was happy or angry. He would repeat "sounds" (because he lost all his words) over and over and over again. He refused to eat anything and just wanted a bottle...did not want the cup!
We took him to a GI doctor because at the age of one he only weighed 17lbs. The doctor's were a little worried. They tested him for everything under the sun and still did not have any answers. I was looking on the internet and came across the phrase "head banging". I thought to myself this is funny, mine does this ALL the time. I began to read the doctor's respone and then I immediately got off the computer.
I couldn't believe what I had just read, "Autism". The word kept ringing in my ears. What? Could it really be? No way! Not my little one. Isn't Autism where they sit in a corner, drool, and rock themselves? I was confused and this just couldn't be, no not in a million years. How did this happen? I decided to research this more because I had to prove to myself that he was NOT Autistic.
The more that I read the more I cried. I didn't want to acknowledge or admit it out loud. How was I going to tell my husband? How was I going to tell my family? I knew that everything they were mentioning decribed my Little Buddy.... poor social interation, poor eye contact, didn't make friends, a lack of spontaneous seeking to share emotions, delay (total lack of) speech , inability to initate or sustain a coversation, lack of make believe play, needed routines, flapping his hands, and the list can go on and on some more....
So what do I do now? I contacted the doctor which led me to Babies Can't Wait. They evaluated him and started therapy immediately, he was 15months old. We went to a neurologist who diagnosed him with Autism. I went home and decided at that moment I had to fight. It wasn't a phyical fight but an emotional one. I was going to have to be his voice. I needed to be his voice. I needed him to suceed.
Follow us to read more of my son's story...
My son (Little Buddy - affectionately named) was born in June. He was perfect! He had ten little toes and ten little fingers. He had a head full of hair (so long that I cut it when got home from the hospital). I thought this was it! I fell in love with him the first time I held him. We brought him home and he began to progress just like any other child. He just didn't sleep very well at night, he did struggle with this a lot. He smiled at me, laughed, rolled over, sat up and even said "Moma". Then out of the blue everything changed.
He began to do little things that most people would think "That is too cool!". I remember he used to lay his blocks out like this: blue, yellow, red, blue yellow and red. If I moved them he would have a fit!!! My Mr. and I were in the living room and I had given our Little Buddy a bowl of cherios. He laid them in a straight line around the table, then proceeded to do this: the first of the set of 3 he ate, the second one went in the bowl, and then he went around again and ate the third one. We just starred at each other in amazement.
He stopped saying: Moma, Dada, hot, bye, hi, bear, and all of the other words he knew. He stopped paying attention to us. He didn't care if I was in the room or not. He started banging his head and screaming! He wouldn't point to what he wanted. He would seek out the sharpest corners in the house and begin to bang his head on them. He would do this if he was happy or angry. He would repeat "sounds" (because he lost all his words) over and over and over again. He refused to eat anything and just wanted a bottle...did not want the cup!
We took him to a GI doctor because at the age of one he only weighed 17lbs. The doctor's were a little worried. They tested him for everything under the sun and still did not have any answers. I was looking on the internet and came across the phrase "head banging". I thought to myself this is funny, mine does this ALL the time. I began to read the doctor's respone and then I immediately got off the computer.
I couldn't believe what I had just read, "Autism". The word kept ringing in my ears. What? Could it really be? No way! Not my little one. Isn't Autism where they sit in a corner, drool, and rock themselves? I was confused and this just couldn't be, no not in a million years. How did this happen? I decided to research this more because I had to prove to myself that he was NOT Autistic.
The more that I read the more I cried. I didn't want to acknowledge or admit it out loud. How was I going to tell my husband? How was I going to tell my family? I knew that everything they were mentioning decribed my Little Buddy.... poor social interation, poor eye contact, didn't make friends, a lack of spontaneous seeking to share emotions, delay (total lack of) speech , inability to initate or sustain a coversation, lack of make believe play, needed routines, flapping his hands, and the list can go on and on some more....
So what do I do now? I contacted the doctor which led me to Babies Can't Wait. They evaluated him and started therapy immediately, he was 15months old. We went to a neurologist who diagnosed him with Autism. I went home and decided at that moment I had to fight. It wasn't a phyical fight but an emotional one. I was going to have to be his voice. I needed to be his voice. I needed him to suceed.
Follow us to read more of my son's story...
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