Jacob is presently 15, he'll be 16 next month.
His father and I have always shared with him only the information he could handle. Consequent to that, he wasn't told about sex until this past summer. He had a vague idea, but not specifics. This past summer, his Dad filled him in. His Dad told me he listened dispassionately and said he had no questions.
One day, recently, he asked his first sex related question. In a completely monotone with a flat affect he asked,
"Mom, can I ask a sex question?"
"Yes Jake."
"Childbirth, sex and periods....it there anything that happens between a woman's legs that ISN'T disgusting?"
"No. It's all bad. You should avoid it at all costs."
"I think I'll wait till I'm in college to have sex."
"Okay, sounds good."
"Or until I experience a dramatic reduction to my aversion to body fluids...."
Oh... the simplicity of autism...
Wednesday, December 07, 2005
Thursday, September 29, 2005
The IEP - How the School Can Help
I attended an IEP ( Individual Education Program ) meeting for my boy yesterday, as I have many times before, and it occured to me that some parents could use a little guidance on this.
Attending the IEP meeting (or whatever it's called in your state) will be yourself, the Special Education teacher, other teachers of your child, sometimes a parent representative (advocate), and usually some therapists which may be the Physical, Occupational, or Speech Therapist, Psychotherapist or all four.
Just an aside here: The Physical Therapist covers coordination and gross (large muscles) motor function. They work on walking, hopping (an important indicator of coordination), balance and many body mechanical functions such as getting on and off the toilet independently.
The Occupational Therapist focuses on ADL's ( activities of daily living ), such as feeding oneself, brushing teeth, holding a pencil, using scissors. These are called "fine motor" activities because they all involve using your hands.
The Speech Therapist is the one autistics need the most and the longest. They should be called Speech and Cognative (thinking) therapists. Long after an autistic can speak, they need cognative therapy to be taught problem solving skills (What do I do if I see fire in the house?), abstract thinking ( Why does Grandma call me a honey bun?) , social filters (Why can't I tell an ugly person that I think they're ugly?).
Some parents approach these meeting with an adversarial attitute "They're not gonna tell me what's good for my kid!"
Remember that the people in the meetings are professionals. They do not love your child, nor should they. You are the only one in the room who loves your child. And because of that love, you are biased. This doesn't mean you are wrong, it only means you see your child through the eyes of love which can make hard facts difficult to accept.
I regard the teachers and aides as my tools. Their expertise and experience gives me knowledge of how my child acts when I can't see him. Through their eyes I can gain the objectivity I need for critical decisions.
It is vital that you have a positive working relationship with your child's IEP team!
I find you get what you give. If you bring a hostile attitude and distrust to the table, that's what you'll get back. If you bring a pleasant demeanor and show a willingness to listen, you will be listened to when you speak.
CHOOSE YOUR BATTLES! Before you go into the meeting, identify your three most important objectives. When it's your turn for input, state your objectives clearly and concisely. Limit your non-negotiable items to one or two things.
For example: I shared only one non-negotiable demand: "Jacob must have a one-on-one aide assigned to him for any school trips. He is highly distractable. He wanders and and doesn't have the problem solving skills to get himself out of a jam. This is non-negotiable for me. I'll compromise with you on anything else, but this is a major safety issue."
This is roughly what I said. Please notice there is no veiled threat, no attitude. Just what I need for him, why, and a clear statement that this is my priority item. I got total cooperation on this item because I was willing to cooperate on everything else.
COOPERATION AND COMPROMISE ARE NOT CAPITULATION!
Keep your priorities straight! What is good for your child may not be what is good for your ego. I have often felt foolish when someone suggested something that was so obvious upon hearing it, that I was embarassed not to have thought of it myself! Now, I just say, "What a great idea! I can't believe I didn't think of it sooner!" If a teacher or therapist thinks less of me for missing what they thought was obvious, that's their perogative, it doesn't mean I have to agree.
Educate yourself about your child's condition. Respect the experience and expertise of the teaching and therapeutic professsionals. Acknowledge what is objectively true about your child's abilities. Acknowledge what is objectively true about your parenting abilities. And be realistic, there are no perfect parents or perfect children. Fix what you can fix, do what you can do, and let other people fill in the gaps. Learn to accept help with grace and gratitude. It will be your turn to help someone else soon enough...
Your autistic child will outlive you. It is your obligation to make your child as independent as possible to give them the most secure life you can. I can't speak for other parents, but no single thought frightens me as much as "Who will take care of Jake when I'm gone?" To this end I have and will make all sacrifices called for. I know I am not unique, I know anyone reading this feels the same way.
You can leave questions in the Comments part of this blog and I'll try to help. I encourage you to make entries in this blog to allow other parents to benefit from anything you've learned.
P.S. I know this is politically incorrect, but don't forget to pray. You don't even have to believe in God, God believes in you. Watch for the angels. Strangely enough, the people you need seem to show up in your life just when you need them, you'll think they're a godsend, and hey - maybe they are!
Attending the IEP meeting (or whatever it's called in your state) will be yourself, the Special Education teacher, other teachers of your child, sometimes a parent representative (advocate), and usually some therapists which may be the Physical, Occupational, or Speech Therapist, Psychotherapist or all four.
Just an aside here: The Physical Therapist covers coordination and gross (large muscles) motor function. They work on walking, hopping (an important indicator of coordination), balance and many body mechanical functions such as getting on and off the toilet independently.
The Occupational Therapist focuses on ADL's ( activities of daily living ), such as feeding oneself, brushing teeth, holding a pencil, using scissors. These are called "fine motor" activities because they all involve using your hands.
The Speech Therapist is the one autistics need the most and the longest. They should be called Speech and Cognative (thinking) therapists. Long after an autistic can speak, they need cognative therapy to be taught problem solving skills (What do I do if I see fire in the house?), abstract thinking ( Why does Grandma call me a honey bun?) , social filters (Why can't I tell an ugly person that I think they're ugly?).
Some parents approach these meeting with an adversarial attitute "They're not gonna tell me what's good for my kid!"
Remember that the people in the meetings are professionals. They do not love your child, nor should they. You are the only one in the room who loves your child. And because of that love, you are biased. This doesn't mean you are wrong, it only means you see your child through the eyes of love which can make hard facts difficult to accept.
I regard the teachers and aides as my tools. Their expertise and experience gives me knowledge of how my child acts when I can't see him. Through their eyes I can gain the objectivity I need for critical decisions.
It is vital that you have a positive working relationship with your child's IEP team!
I find you get what you give. If you bring a hostile attitude and distrust to the table, that's what you'll get back. If you bring a pleasant demeanor and show a willingness to listen, you will be listened to when you speak.
CHOOSE YOUR BATTLES! Before you go into the meeting, identify your three most important objectives. When it's your turn for input, state your objectives clearly and concisely. Limit your non-negotiable items to one or two things.
For example: I shared only one non-negotiable demand: "Jacob must have a one-on-one aide assigned to him for any school trips. He is highly distractable. He wanders and and doesn't have the problem solving skills to get himself out of a jam. This is non-negotiable for me. I'll compromise with you on anything else, but this is a major safety issue."
This is roughly what I said. Please notice there is no veiled threat, no attitude. Just what I need for him, why, and a clear statement that this is my priority item. I got total cooperation on this item because I was willing to cooperate on everything else.
COOPERATION AND COMPROMISE ARE NOT CAPITULATION!
Keep your priorities straight! What is good for your child may not be what is good for your ego. I have often felt foolish when someone suggested something that was so obvious upon hearing it, that I was embarassed not to have thought of it myself! Now, I just say, "What a great idea! I can't believe I didn't think of it sooner!" If a teacher or therapist thinks less of me for missing what they thought was obvious, that's their perogative, it doesn't mean I have to agree.
Educate yourself about your child's condition. Respect the experience and expertise of the teaching and therapeutic professsionals. Acknowledge what is objectively true about your child's abilities. Acknowledge what is objectively true about your parenting abilities. And be realistic, there are no perfect parents or perfect children. Fix what you can fix, do what you can do, and let other people fill in the gaps. Learn to accept help with grace and gratitude. It will be your turn to help someone else soon enough...
Your autistic child will outlive you. It is your obligation to make your child as independent as possible to give them the most secure life you can. I can't speak for other parents, but no single thought frightens me as much as "Who will take care of Jake when I'm gone?" To this end I have and will make all sacrifices called for. I know I am not unique, I know anyone reading this feels the same way.
You can leave questions in the Comments part of this blog and I'll try to help. I encourage you to make entries in this blog to allow other parents to benefit from anything you've learned.
P.S. I know this is politically incorrect, but don't forget to pray. You don't even have to believe in God, God believes in you. Watch for the angels. Strangely enough, the people you need seem to show up in your life just when you need them, you'll think they're a godsend, and hey - maybe they are!
Monday, August 08, 2005
Fishing with Autism
One Saturday a few summer back, my brother David, took me and my two perfect children fishing under a bridge on Shelter Island. David is one of those rare men who actually likes children - he really thinks they're fun. Just as our familes taught us to fish, we now pass this important knowledge down to the next generation. As I told my daughter, "Feed a man a fish and he'll come around everyday. Teach a man to fish and you can get rid of him when your friends visit."
Within five minutes of arriving at the fishing spot, we had the soda and beer in the water, poles baited, and I was dragging my lawn chair into knee deep water. The bait in my pocket would wiggle a little and give me a cheap thrill. I unfolded my chair, sat down and commensed "serious fishing".
My exhusband was a "Catch and Release" Fly Fisherman. He spent more time fiddling with his fly (and that's whole other column) than he ever spent fishing. More over the concept of catching fish and letting it go is as foreign to my family as a liberal thought to Sen. Jesse Helms.
My family are Catch and Filet Fisherman. Under the docks all over Shelter Island, the fish have put up posters of my family's legs at local Sand Bars with the caption, "Warning from the Sturgeon General; Clams scram when you see these legs. Don't let your Flounder founder. Make your Scallop gallup. Get your Striper hyper. Make your Mussel hussle. Otherwise your Bass is grass, you'll be Crab on a slab, Snail in a pail, a Snapper in the crapper, Eel on a reel, Pike on a spike, a dorsal morsal, in other woirds, You're splatter on a platter.....".
My son, Jacob, has autism. He was eight at the time and this was his first time fishing so we were all prepared for anything. His auditory comprehension was very poor, but his visual comprehension was and is, amazing. We call him, "One Take Jake". After ten minutes of fruitless verbal instruction on casting, Uncle David just showed him just once. Jake took the pole and cast a perfect line up and over in a beautiful arc and did it over and over. Yup, over and over. Obviously the lesson about leaving the line in the water until a fish bites is for another day.....
My then eleven year old daughter sunned herself and together we gave directions to tourists who stopped on the bridge and called down to us. Now, I get lost when I turn around in a phone booth. Asking me for directions is like asking Stevie Wonder to drive...... the people we directed are probably still lost.
When my son was through casting, he went to the bottom of the bridge to talk to the hermit crabs. He was reciting word for word the lecture on the 'Life of Crustaceans' he had memorized from a CD-ROM. We all listened because we know from experience that if you interrupt him, he'll start over and over until he completes the sequence. There is a way to stop him, but we left the duct tape in the car.
Suddenly the lecture stopped, there was a splash and then the words, "I got ya". I looked over to find my son and brother gone. As fast as a beached orca can move, I made my way to the base of the bridge just as David was emerging from the swift moving current with a boney eight year old wrapped around his head. He lost his thongs in the process of swimming to get Jake. We gave Jake a new nickname, "Swifty", 'cause now you see him, now you don't...
We left shortly after that heart stopping experience. I gave David my new orange thongs that I had just gotten from K-Mart for four dollars. I know I was going overboard with my generousity. But what the hell, he saved my son's life. I always tell my son he's my "special boy". Once he told my friend , "My mother got me from the hostipul because I was on special."
Within five minutes of arriving at the fishing spot, we had the soda and beer in the water, poles baited, and I was dragging my lawn chair into knee deep water. The bait in my pocket would wiggle a little and give me a cheap thrill. I unfolded my chair, sat down and commensed "serious fishing".
My exhusband was a "Catch and Release" Fly Fisherman. He spent more time fiddling with his fly (and that's whole other column) than he ever spent fishing. More over the concept of catching fish and letting it go is as foreign to my family as a liberal thought to Sen. Jesse Helms.
My family are Catch and Filet Fisherman. Under the docks all over Shelter Island, the fish have put up posters of my family's legs at local Sand Bars with the caption, "Warning from the Sturgeon General; Clams scram when you see these legs. Don't let your Flounder founder. Make your Scallop gallup. Get your Striper hyper. Make your Mussel hussle. Otherwise your Bass is grass, you'll be Crab on a slab, Snail in a pail, a Snapper in the crapper, Eel on a reel, Pike on a spike, a dorsal morsal, in other woirds, You're splatter on a platter.....".
My son, Jacob, has autism. He was eight at the time and this was his first time fishing so we were all prepared for anything. His auditory comprehension was very poor, but his visual comprehension was and is, amazing. We call him, "One Take Jake". After ten minutes of fruitless verbal instruction on casting, Uncle David just showed him just once. Jake took the pole and cast a perfect line up and over in a beautiful arc and did it over and over. Yup, over and over. Obviously the lesson about leaving the line in the water until a fish bites is for another day.....
My then eleven year old daughter sunned herself and together we gave directions to tourists who stopped on the bridge and called down to us. Now, I get lost when I turn around in a phone booth. Asking me for directions is like asking Stevie Wonder to drive...... the people we directed are probably still lost.
When my son was through casting, he went to the bottom of the bridge to talk to the hermit crabs. He was reciting word for word the lecture on the 'Life of Crustaceans' he had memorized from a CD-ROM. We all listened because we know from experience that if you interrupt him, he'll start over and over until he completes the sequence. There is a way to stop him, but we left the duct tape in the car.
Suddenly the lecture stopped, there was a splash and then the words, "I got ya". I looked over to find my son and brother gone. As fast as a beached orca can move, I made my way to the base of the bridge just as David was emerging from the swift moving current with a boney eight year old wrapped around his head. He lost his thongs in the process of swimming to get Jake. We gave Jake a new nickname, "Swifty", 'cause now you see him, now you don't...
We left shortly after that heart stopping experience. I gave David my new orange thongs that I had just gotten from K-Mart for four dollars. I know I was going overboard with my generousity. But what the hell, he saved my son's life. I always tell my son he's my "special boy". Once he told my friend , "My mother got me from the hostipul because I was on special."
Sunday, August 07, 2005
Erection? Don't leave home without it....
In the course of caring for my autistic son, I lost a career in hospital administration, lost friendships, lost my husband. I have to say in all fairness, we were having problems before our son was diagnosed, but Jacobs demand's on my time put the final nail in the coffin. I don't think he's ever forgiven me for giving him an imperfect son. When I informed him of Jake's diagnosis, his very first response was, "What did you do?" He was irritated that the CVS (Corianic Villi Sampling) test at four months wasn't able to identify the autism early enough to abort. I admit I would have seriously considered abortion if the test had shown autism. But I remember I could already feel him moving, so I hope I would not have made the choice to abort the blue eyed boy who is the greatest joy of my life today.
Much is being made today about the mercury in innoculations being the cause of the dramatic rise in autism. I hope the mercury is the cause so I'll know it wasn't something I did that harmed him en utero, and I pray to God the mercury isn't the cause becasue then it means I held him down for the shots that robbed him of speech for so long and still rob him of normalcy today.
I realize I can't be blamed intellectually for following medical practices, but it doesn't free me emotionally. How could it? If it turns out to be the mercury, then I just have to live with it, like all the other parents. It's like being the driver of a car that gets hit by a truck and leaves your child disabled. Of course you're not to blame, but the guilt won't leave.
So how can he be a joy to me? This kid who has chipped my teeth by throwing his head back into my face and even broke off one tooth entirely?
Well, autistic children are forever innocent. They see the world without prejudice, without assumptions, without malice. They get into situations that can make you can laugh or cry, so you might as well laugh.
One day Jake and I were grocery shopping. He was about ten. I was choosing coffee and he was a little further down choosing which hot chocolate with mini-marshmellows he was willing to try. Suddenly a woman brushed past me and shot me a look. The look was one I have become very familiar with, it said, "Is that your son? Do you know what he's doing?"
Turning to face Jake, I saw that he was standing in the aisle with his sweat pants and briefs fully extended at the waist band. He was staring down into his pants totally fascinated with something.....
"Mom, look at this," He said in his characteristic monotone.
Fearing the worst, but being a dutiful mother, I peered in...... he had an erection. Then he said, "Watch this." And he made it bounce....
"That's very nice Jake," I said, "but you know ... that's kind of a private activity for a boy. It's okay to play with your peety in private, but not in a store. Okay?"
Being ever obediant he responded, "Okay Mom. But you don't understand because you don't have a peety, all you have is a fluffy and it doesn't do any tricks...."
I laughed so hard, I thought my pants would never dry....if he only knew the all tricks this fluffy has done!
So, there you have it folks, my existentialist angst has been solved ... I don't have a peety, I just have a fluffy and it doesn't do any tricks. The mystery of life has been solved, even in the autistic world, it all comes down to peety's and fluffy's... and just for the record, Fluffy's Rule!
Much is being made today about the mercury in innoculations being the cause of the dramatic rise in autism. I hope the mercury is the cause so I'll know it wasn't something I did that harmed him en utero, and I pray to God the mercury isn't the cause becasue then it means I held him down for the shots that robbed him of speech for so long and still rob him of normalcy today.
I realize I can't be blamed intellectually for following medical practices, but it doesn't free me emotionally. How could it? If it turns out to be the mercury, then I just have to live with it, like all the other parents. It's like being the driver of a car that gets hit by a truck and leaves your child disabled. Of course you're not to blame, but the guilt won't leave.
So how can he be a joy to me? This kid who has chipped my teeth by throwing his head back into my face and even broke off one tooth entirely?
Well, autistic children are forever innocent. They see the world without prejudice, without assumptions, without malice. They get into situations that can make you can laugh or cry, so you might as well laugh.
One day Jake and I were grocery shopping. He was about ten. I was choosing coffee and he was a little further down choosing which hot chocolate with mini-marshmellows he was willing to try. Suddenly a woman brushed past me and shot me a look. The look was one I have become very familiar with, it said, "Is that your son? Do you know what he's doing?"
Turning to face Jake, I saw that he was standing in the aisle with his sweat pants and briefs fully extended at the waist band. He was staring down into his pants totally fascinated with something.....
"Mom, look at this," He said in his characteristic monotone.
Fearing the worst, but being a dutiful mother, I peered in...... he had an erection. Then he said, "Watch this." And he made it bounce....
"That's very nice Jake," I said, "but you know ... that's kind of a private activity for a boy. It's okay to play with your peety in private, but not in a store. Okay?"
Being ever obediant he responded, "Okay Mom. But you don't understand because you don't have a peety, all you have is a fluffy and it doesn't do any tricks...."
I laughed so hard, I thought my pants would never dry....if he only knew the all tricks this fluffy has done!
So, there you have it folks, my existentialist angst has been solved ... I don't have a peety, I just have a fluffy and it doesn't do any tricks. The mystery of life has been solved, even in the autistic world, it all comes down to peety's and fluffy's... and just for the record, Fluffy's Rule!
Wednesday, July 06, 2005
How Can I Tell If My Child Has Autism
I have found The Autism Society of America to be the oldest and most informative site on this problem and I encourage you to visit the site for excellent information. Here I have copied their list of CHARACTERISTICS OF AUTISM. If your child has half of these behaviors, get them to a DEVELOPMENTAL PEDIATRICIAN for diagnosis. Early intervention makes a huge difference!
from their site:
"Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. The person may have difficulty initiating and/or maintaining a conversation. Communication is often described as talking at others (for example, monologue on a favorite subject that continues despite attempts by others to interject comments).
People with autism process and respond to information in unique ways. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits.
- Insistence on sameness; resistance to change
- Difficulty in expressing needs; uses gestures or pointing instead of words
- Repeating words or phrases in place of normal, responsive language
- Laughing, crying, showing distress for reasons not apparent to others
- Prefers to be alone; aloof manner
- Tantrums
- Difficulty in mixing with others
- May not want to cuddle or be cuddled
- Little or no eye contact
- Unresponsive to normal teaching methods
- Sustained odd play
- Spins objects
- Inappropriate attachments to objects
- Apparent over-sensitivity or under-sensitivity to pain
- No real fears of danger
- Noticeable physical over-activity or extreme under-activity
- Uneven gross/fine motor skills
- Not responsive to verbal cues; acts as if deaf although hearing tests in normal range."
After ruling out deafness, Jake's speech therapist, Robin Rossman MS CCC (30 N. San Pedro Rd, Suite 265, San Rafael, CA 94901 phone 415-479-7880) went to work on teaching Jake and I some basic sign language so that Jake and I could communicate visually until he, many years later, learned to speak. I know a woman who won't allow her autistic son to be taught deaf signs because she believes if he learns to sign, he'll never learn to speak. I can only say that I had great success using sign language until Jake could talk and I know many other parents who had the same success. I say, use whatever works today. If you stand on principle, you may be right, but how will you know today if he or she is hungry, cold, needs something? Give them any venue they can employ to communicate with you. You can change and adjust methods as you go.
You Can Lead an Autistic to Food, But You Can't Make Him Eat...
Hi Danny,
I'm copying and pasting your email to my autism blog. I never heard of Sprue... I assume it's a gluten allergy.
Many people have told me my son's autism was due to the immunology shots he got as a baby/toddler. I was guilt stricken and in horrible emotional pain for a long time thinking that I had held my baby still for the shots that made him autistic. Although I know I can't be held accountable, but it doesn't change a mother's feelings if she thinks she did ANYTHING to hurt her baby.
Several people have told me about gluten and all I have to do is change his diet to cure him. Anyone who wants to change my son's diet has to live in my house and let me leave the state while they try to change his diet. He eats: Eggo Homestyle Waffles (you have to take scissors and trim the edges, if the waffles aren't perfectly round, they can't be eaten), Louis Rich Turkey Bacon, Skippy Low Fat Smooth Peanut Butter (eaten with a spoon, but ONLY from a NEW JAR each time), Original Pringles (but not any broken ones), McDonalds Chicken MeNuggets (only the round ones), caffeine free coke, whole milk, sometimes Minute Maid strained orange juice. That's the whole list. He's never had a piece of fruit or vegetable since I stopped bottle feeding him when he was six (I used to mix strained fruits and veggies in his formula). I give him vitamins to fill the gap. Once I made him eat one little raisin. He gagged until he vomited on the floor. He was crying and got hysterical at being forced to eat the raisin. He was nonverbal the whole next day. That was the last time I tried to change his diet. Now I just suggest and hope...
If the MD community had expanded the diagnostic parameters to include PDD on the spectrum, that sure explains a lot....
There's a great site Autism Society of America, best info I think. I have to put their link on my blog.
It has been one long difficult haul with an autistic child.... I can't tell you how many people try to tell me how to handle him and how I need to impose more discipline on him, etc.
I was seeing a man briefly until I had him to the house for lasagna. We both love games so we were playing Monopoly. Jacob wanted to "play" and I explained that he doesn't know or care about the rules, he just likes to roll the dice and move the little car around a few laps and then he wanders away. We just give him a turn and let him move the car. The guy looks at Jake and says,"Well I'm not gonna baby you like your mother. If you wanna play this game, you have to play it right."
He got the lasagna, but nothing else, the relationship lasted about another 30 seconds after he said that to Jake. Jake was in tears and agitated. I sent the guy out and spent the rest of the night consoling a 12 year old boy who just wanted to play his version of monopoly for five minutes. Once he was calm, we played his version of Monopoly, because autistics always have to complete the cycle or task. We took turns, he moved the car, I moved the dog. Since the car made it around the board first, I announced him as the winner (he always wins..) and he was just fine the rest of the night...
Sally
I'm copying and pasting your email to my autism blog. I never heard of Sprue... I assume it's a gluten allergy.
Many people have told me my son's autism was due to the immunology shots he got as a baby/toddler. I was guilt stricken and in horrible emotional pain for a long time thinking that I had held my baby still for the shots that made him autistic. Although I know I can't be held accountable, but it doesn't change a mother's feelings if she thinks she did ANYTHING to hurt her baby.
Several people have told me about gluten and all I have to do is change his diet to cure him. Anyone who wants to change my son's diet has to live in my house and let me leave the state while they try to change his diet. He eats: Eggo Homestyle Waffles (you have to take scissors and trim the edges, if the waffles aren't perfectly round, they can't be eaten), Louis Rich Turkey Bacon, Skippy Low Fat Smooth Peanut Butter (eaten with a spoon, but ONLY from a NEW JAR each time), Original Pringles (but not any broken ones), McDonalds Chicken MeNuggets (only the round ones), caffeine free coke, whole milk, sometimes Minute Maid strained orange juice. That's the whole list. He's never had a piece of fruit or vegetable since I stopped bottle feeding him when he was six (I used to mix strained fruits and veggies in his formula). I give him vitamins to fill the gap. Once I made him eat one little raisin. He gagged until he vomited on the floor. He was crying and got hysterical at being forced to eat the raisin. He was nonverbal the whole next day. That was the last time I tried to change his diet. Now I just suggest and hope...
If the MD community had expanded the diagnostic parameters to include PDD on the spectrum, that sure explains a lot....
There's a great site Autism Society of America, best info I think. I have to put their link on my blog.
It has been one long difficult haul with an autistic child.... I can't tell you how many people try to tell me how to handle him and how I need to impose more discipline on him, etc.
I was seeing a man briefly until I had him to the house for lasagna. We both love games so we were playing Monopoly. Jacob wanted to "play" and I explained that he doesn't know or care about the rules, he just likes to roll the dice and move the little car around a few laps and then he wanders away. We just give him a turn and let him move the car. The guy looks at Jake and says,"Well I'm not gonna baby you like your mother. If you wanna play this game, you have to play it right."
He got the lasagna, but nothing else, the relationship lasted about another 30 seconds after he said that to Jake. Jake was in tears and agitated. I sent the guy out and spent the rest of the night consoling a 12 year old boy who just wanted to play his version of monopoly for five minutes. Once he was calm, we played his version of Monopoly, because autistics always have to complete the cycle or task. We took turns, he moved the car, I moved the dog. Since the car made it around the board first, I announced him as the winner (he always wins..) and he was just fine the rest of the night...
Sally
Comments from a pediatrician
This is from my friend Danny who is a pediatrician.
Sally,
Thanx for the link to your BLOG about your experiences with Autism.
Sally,
Thanx for the link to your BLOG about your experiences with Autism.
You wrote:
"When my son Jacob was born in 1990, it was only occurring once in 30,000 births. I believe part of the reason for the increase is better diagnosing............."
It's not better diagnosing.
It's better lumping of many different things into what is now termed "PDD" (Pervasive Developmental Delay). e.g. What used to be called "psycho-motor retardation" is now lumped in with autism. This is what has contributed to the confusion about autism.
What is now called autism is actually many different entities. That's why I got many many calls after that magazine article came out, "How I Cured My Child of Autism".
What is now called autism is actually many different entities. That's why I got many many calls after that magazine article came out, "How I Cured My Child of Autism".
They removed gluten from the diet and he was cured!! SHEESH, that child had SPRUE not autism !!!! Why their doctor didn't recognize the other symptoms and labeled him autistic is beyond me. But then again, many people write to be sensational and get publicity. (c.f. Robert Kennedy's son who is all over the news now)
The problem is that everyone has an agenda and everyone is out to make a buck. But I digeress. I'm glad I got an updated on the kids from your blog.
:-)
Take care
Enjoy the summer.
Danny
Monday, June 27, 2005
Advice for Scared Parents
Travels with Jake
According to The Autism Society of America, autism is on the rise and now strikes once in every 500 births in America. (www.autism-society.org). When my son Jacob was born in 1990, it was only occurring once in 30,000 births. I believe part of the reason for the increase is better diagnosing, and I think it will eventually be discovered that a common food additive is triggering the rest. I say a common food addictive because nothing else could reach every pregnant woman in the country across all social and economic lines. Meanwhile, what do we do?
My son, Jacob, is fifteen now. He didn’t speak till he was five. He was bottle fed exclusively and in diapers till he was six. Today, he attends regular school with a full time aide. His vocabulary is commensurate with his peer group. Only within the past ten months has he begun to converse with people. He is learning to listen, take turns talking and stay on topic. When he wants to stop conversing, instead of simply turning his back and walking away, he has learned to say, “Please excuse me, I want to go now", before he turns and walks away. He still only eats ten foods. If he adds a new one, which is rare, he drops one off the list. Considering where he started, he has done great. College and gainful employment is in his future, although it is unlikely he will drive, manage a checkbook, or live independently.
By societies standards, he is rude and inappropriate in almost every setting owing to his shocking bluntness. He simply doesn’t lie, ever. There is no guile in him. Since he has no sense of cause and effect, he can’t anticipate how you will react to his comments, so he never gives your feelings a second thought. When Grandma shows him a picture of herself on her wedding day and says, “I was a pretty girl back then, huh, Jake?” he simply hands the picture back and flatly says, “No. You weren't pretty.”, while I look for a door to hide behind....
In spite of all the hardship of raising him, he is the joy of my life. I’ve laughed as often as I’ve cried when I see the world as he does. So, I thought I could share a few pointers on parenting an autistic for those struggling out there.
#1] Educate yourself. Read all you can. Be responsible to make yourself your most reliable expert.
#2] Educate your extended family and friends and anyone who will be in contact with your child on a regular basis about his/ her autistic behaviors. When my friends would visit me when Jake was young, he’d hide under my chair. If they reached to touch him, he’d bite them. Many thought I should discipline him for biting. I had to educate them that he bit out of fear. He wouldn’t tolerate being touched, not even by me. You can’t apply standard discipline to a child who cannot comprehend that he did something wrong. You can only discipline a child to their level of understanding.
#3] If possible, dedicate a room or area to your child’s comfort.
First, make it safe according to their specific needs. My son would spin endlessly for hours on end. I taped padding around anything with corners. I only kept essential furniture in the room.
Second, ‘Zen’ the room. Reduce all sources of stimulation; remove pictures on the wall, stereos, decorative knickknacks, et. al. Make the room like a Zen retreat, as peaceful and soothing as possible. Autistics can’t dismiss stimuli. They are taking in everything all the time, which you find out when you realize they can detect the most minute change in their environment. When I put a small plant on the windowsill in our ‘Jake Zone’, he noticed instantly and that plant became an airborne missile landing on the floor of the adjoining kitchen, narrowly missing his sister’s head.
#4] Take advantage of the help that works for YOU. You can’t do this alone. You probably have a relationship, a home, other children, a job, and other obligations pulling at you. Look into what is available in your area, explore your options. If the best Speech Therapist for autistics is 20 miles from your home and you need two appointments a week, and there’s a good Speech Therapist 2 miles from home, go to the closer one and work together to hone a program for your child. You do not have to climb every mountain! You are your child’s strength, you are their voice until they can speak. If you exhaust yourself, you compromise their best advocate and caregiver.
#5] If possible, one parent stays home. If you can remotely manage it, let one parent stay home. If you are a single parent, maybe you can work from home. If there is any way at all, make it so. No one will understand and be able to anticipate your child’s needs better than you. No one will notice slight changes in behavior that could be a springboard to better understanding. Your child will probably will not do well in daycare. Too much stimulation will drive them further inward. Your child probably can’t make his/her needs known to the daycare provider. As a toddler, my son would have nothing to do with other children and struck them if the came near. Lastly, to alert you, not to alarm you, your child wouldn’t be able to tell you if they were mistreated or neglected. No one else can tolerate your child’s idiosyncratic behaviors like you. No one else is a better source of safety, stability and love than you.
#6] Laugh, Pray, Chat. Laugh at funny things they do. By the time I got back from the bathroom one day, my then five year old son had dumped out and spread a five pound bag of sugar all over the table in the ‘Jake Zone’. I watched as he carefully set up the Star Wars figures from the beginning of episode five, which begins on a snow covered planet. He only spoke jargon, but he played with the figures and pretended they were talking to each other - that was a first! If I were his daycare provider, I would’ve vacuumed up the sugar and punished him. But I was an at home parent, and for the price of a five pound bag of sugar, my autistic boy was learning, through play, that people face each other and take turns when talking. Even though it was all gibberish, he was using inflection and changing the pitch of his voice for each character. He was learning about communication! At the end of the play, I put the ‘snow’ in a ziplock bag and showed him the cabinet I would store it in. Thereafter, whenever Luke needed to be rescued on the snow planet, Jake would point to the cabinet and I would give him the bag. I vacuumed up any sugar that went off the table and the bag got smaller and smaller till it was eventually forgotten.
Pray. It hurts nothing and could help everything, even if it serves only to quiet your mind for a short time, pray. Be grateful for all you’ve got and ask for all you need. I can only tell you that Providence has put the right people in my life at the right time when I have asked for help with my son.
Chat. Call your friends and chat so you don’t go nuts! Tell them how tough it is and let them offer you tea and sympathy. You need it. The caring of friends gets you through the next day. When someone (not a friend), and it will happen, infers that you are milking your child’s condition for your own secondary emotional gain, try my response and say it loud enough to embarrass them: “Absolutely. I need all the ‘atta girls’ I can get right now to get through this. Do YOU have a special needs child?” They will always answer ‘no’ because no one with a special needs child would accuse you of overstating how hard it is to consistently mete out all the extra love and care they need.
#7] Don’t fight the detours, you’ll get there just the same. Don’t get upset if you have to cancel his/her physical therapy appointment at the last minute because someone else in the family is having a crisis that needs you now. Don’t get upset if you can’t get them to give up their security blanket just because the ‘expert’ says it’s time to. I bet the ‘expert’ who said it doesn’t have an autistic child. It has to be your child’s decision to surrender favorite objects or change behaviors. We create the matrix that encourages them to choose a better thing, and having made a better choice, we reward the behavior which tells them it’s okay to try new things and the best choices will get rewarded. It’s called successive approximation. Reward all the little steps that steer them to the desired goals.
Have a careplan in place for your child, but don’t get crazy when the train jumps the track, you’ll get back on track as soon as you can. Being a single parent for most of my son’s life, both my kids slept with me when they were small until I could afford a bed for each of them. Money was tight and I was blowing most of it on food and rent.....To this day, on stormy nights, which frighten him, or when he feels sick, I still wake to find Jake in my bed. I used to get scared that I had harmed him in someway that he’s still so insecure at fifteen. When I tried to forbid him from sleeping with me, he would become tearfully anxious and agitated.
But one night, I looked again. There, in my bed was a chronologically fifteen year old boy, emotionally about eleven, clutching his stuffed stegosaurus named ‘Spike’, that he has slept with since he was two. Along with his four foot stuffed green python named, “No feet”, and a small pink monkey named, “Pinky”. All four of them come to my bed for comfort and security sometimes. So when I become aware that there’s a zoo in my bed, I get my pillow and move to the couch. It happens less and less as time goes by and I know eventually, Jake, Spike, No feet and Pinky will all feel secure enough, even when they are under the weather, to stay in their own bed every night.
Have confidence in your parenting. You love this baby and nothing you will do will cause irreparable harm to your child. You will adjust and tweak your parenting abilities as you go. Just like a sailor constantly reading the wind and the water and making adjustments for the pitch and yar, you will read your child and know what you have to do next. I knew when my son was hungry, tired, anxious, sick. I had to know because he couldn’t tell me. It wasn't intuition, it was that I was keenly attuned to him through thousands of hours of observation. I learned to KNOW with dead reckoning what he needed. I learned to have confidence that I did know and still do know, better than anyone on the planet, exactly what MY son needs. Have I predicated every decision in my life on his needs? Yes, I have. And you will too. You can’t avoid it, so just go with it.
Jake has exhibited savant behavior with regard to paleontology. At age ten, his uncle and I took him to the Museum of Natural History in New York. He correctly identified every dinosaur skeleton before the guide did. He plans to study paleontology in Montana where the bones are. When he informed me of his plans, he said, "You’ll like Montana Mom.”
I said, “Hey, I don’t want to go to Montana!”
To which he responded, “You have to come, I don’t know where they sell eggo waffles.”
Well, I do love to travel. And I’ve never been to Montana.... And a man can’t be separated from his waffles. So I guess our travels will continue!
According to The Autism Society of America, autism is on the rise and now strikes once in every 500 births in America. (www.autism-society.org). When my son Jacob was born in 1990, it was only occurring once in 30,000 births. I believe part of the reason for the increase is better diagnosing, and I think it will eventually be discovered that a common food additive is triggering the rest. I say a common food addictive because nothing else could reach every pregnant woman in the country across all social and economic lines. Meanwhile, what do we do?
My son, Jacob, is fifteen now. He didn’t speak till he was five. He was bottle fed exclusively and in diapers till he was six. Today, he attends regular school with a full time aide. His vocabulary is commensurate with his peer group. Only within the past ten months has he begun to converse with people. He is learning to listen, take turns talking and stay on topic. When he wants to stop conversing, instead of simply turning his back and walking away, he has learned to say, “Please excuse me, I want to go now", before he turns and walks away. He still only eats ten foods. If he adds a new one, which is rare, he drops one off the list. Considering where he started, he has done great. College and gainful employment is in his future, although it is unlikely he will drive, manage a checkbook, or live independently.
By societies standards, he is rude and inappropriate in almost every setting owing to his shocking bluntness. He simply doesn’t lie, ever. There is no guile in him. Since he has no sense of cause and effect, he can’t anticipate how you will react to his comments, so he never gives your feelings a second thought. When Grandma shows him a picture of herself on her wedding day and says, “I was a pretty girl back then, huh, Jake?” he simply hands the picture back and flatly says, “No. You weren't pretty.”, while I look for a door to hide behind....
In spite of all the hardship of raising him, he is the joy of my life. I’ve laughed as often as I’ve cried when I see the world as he does. So, I thought I could share a few pointers on parenting an autistic for those struggling out there.
#1] Educate yourself. Read all you can. Be responsible to make yourself your most reliable expert.
#2] Educate your extended family and friends and anyone who will be in contact with your child on a regular basis about his/ her autistic behaviors. When my friends would visit me when Jake was young, he’d hide under my chair. If they reached to touch him, he’d bite them. Many thought I should discipline him for biting. I had to educate them that he bit out of fear. He wouldn’t tolerate being touched, not even by me. You can’t apply standard discipline to a child who cannot comprehend that he did something wrong. You can only discipline a child to their level of understanding.
#3] If possible, dedicate a room or area to your child’s comfort.
First, make it safe according to their specific needs. My son would spin endlessly for hours on end. I taped padding around anything with corners. I only kept essential furniture in the room.
Second, ‘Zen’ the room. Reduce all sources of stimulation; remove pictures on the wall, stereos, decorative knickknacks, et. al. Make the room like a Zen retreat, as peaceful and soothing as possible. Autistics can’t dismiss stimuli. They are taking in everything all the time, which you find out when you realize they can detect the most minute change in their environment. When I put a small plant on the windowsill in our ‘Jake Zone’, he noticed instantly and that plant became an airborne missile landing on the floor of the adjoining kitchen, narrowly missing his sister’s head.
#4] Take advantage of the help that works for YOU. You can’t do this alone. You probably have a relationship, a home, other children, a job, and other obligations pulling at you. Look into what is available in your area, explore your options. If the best Speech Therapist for autistics is 20 miles from your home and you need two appointments a week, and there’s a good Speech Therapist 2 miles from home, go to the closer one and work together to hone a program for your child. You do not have to climb every mountain! You are your child’s strength, you are their voice until they can speak. If you exhaust yourself, you compromise their best advocate and caregiver.
#5] If possible, one parent stays home. If you can remotely manage it, let one parent stay home. If you are a single parent, maybe you can work from home. If there is any way at all, make it so. No one will understand and be able to anticipate your child’s needs better than you. No one will notice slight changes in behavior that could be a springboard to better understanding. Your child will probably will not do well in daycare. Too much stimulation will drive them further inward. Your child probably can’t make his/her needs known to the daycare provider. As a toddler, my son would have nothing to do with other children and struck them if the came near. Lastly, to alert you, not to alarm you, your child wouldn’t be able to tell you if they were mistreated or neglected. No one else can tolerate your child’s idiosyncratic behaviors like you. No one else is a better source of safety, stability and love than you.
#6] Laugh, Pray, Chat. Laugh at funny things they do. By the time I got back from the bathroom one day, my then five year old son had dumped out and spread a five pound bag of sugar all over the table in the ‘Jake Zone’. I watched as he carefully set up the Star Wars figures from the beginning of episode five, which begins on a snow covered planet. He only spoke jargon, but he played with the figures and pretended they were talking to each other - that was a first! If I were his daycare provider, I would’ve vacuumed up the sugar and punished him. But I was an at home parent, and for the price of a five pound bag of sugar, my autistic boy was learning, through play, that people face each other and take turns when talking. Even though it was all gibberish, he was using inflection and changing the pitch of his voice for each character. He was learning about communication! At the end of the play, I put the ‘snow’ in a ziplock bag and showed him the cabinet I would store it in. Thereafter, whenever Luke needed to be rescued on the snow planet, Jake would point to the cabinet and I would give him the bag. I vacuumed up any sugar that went off the table and the bag got smaller and smaller till it was eventually forgotten.
Pray. It hurts nothing and could help everything, even if it serves only to quiet your mind for a short time, pray. Be grateful for all you’ve got and ask for all you need. I can only tell you that Providence has put the right people in my life at the right time when I have asked for help with my son.
Chat. Call your friends and chat so you don’t go nuts! Tell them how tough it is and let them offer you tea and sympathy. You need it. The caring of friends gets you through the next day. When someone (not a friend), and it will happen, infers that you are milking your child’s condition for your own secondary emotional gain, try my response and say it loud enough to embarrass them: “Absolutely. I need all the ‘atta girls’ I can get right now to get through this. Do YOU have a special needs child?” They will always answer ‘no’ because no one with a special needs child would accuse you of overstating how hard it is to consistently mete out all the extra love and care they need.
#7] Don’t fight the detours, you’ll get there just the same. Don’t get upset if you have to cancel his/her physical therapy appointment at the last minute because someone else in the family is having a crisis that needs you now. Don’t get upset if you can’t get them to give up their security blanket just because the ‘expert’ says it’s time to. I bet the ‘expert’ who said it doesn’t have an autistic child. It has to be your child’s decision to surrender favorite objects or change behaviors. We create the matrix that encourages them to choose a better thing, and having made a better choice, we reward the behavior which tells them it’s okay to try new things and the best choices will get rewarded. It’s called successive approximation. Reward all the little steps that steer them to the desired goals.
Have a careplan in place for your child, but don’t get crazy when the train jumps the track, you’ll get back on track as soon as you can. Being a single parent for most of my son’s life, both my kids slept with me when they were small until I could afford a bed for each of them. Money was tight and I was blowing most of it on food and rent.....To this day, on stormy nights, which frighten him, or when he feels sick, I still wake to find Jake in my bed. I used to get scared that I had harmed him in someway that he’s still so insecure at fifteen. When I tried to forbid him from sleeping with me, he would become tearfully anxious and agitated.
But one night, I looked again. There, in my bed was a chronologically fifteen year old boy, emotionally about eleven, clutching his stuffed stegosaurus named ‘Spike’, that he has slept with since he was two. Along with his four foot stuffed green python named, “No feet”, and a small pink monkey named, “Pinky”. All four of them come to my bed for comfort and security sometimes. So when I become aware that there’s a zoo in my bed, I get my pillow and move to the couch. It happens less and less as time goes by and I know eventually, Jake, Spike, No feet and Pinky will all feel secure enough, even when they are under the weather, to stay in their own bed every night.
Have confidence in your parenting. You love this baby and nothing you will do will cause irreparable harm to your child. You will adjust and tweak your parenting abilities as you go. Just like a sailor constantly reading the wind and the water and making adjustments for the pitch and yar, you will read your child and know what you have to do next. I knew when my son was hungry, tired, anxious, sick. I had to know because he couldn’t tell me. It wasn't intuition, it was that I was keenly attuned to him through thousands of hours of observation. I learned to KNOW with dead reckoning what he needed. I learned to have confidence that I did know and still do know, better than anyone on the planet, exactly what MY son needs. Have I predicated every decision in my life on his needs? Yes, I have. And you will too. You can’t avoid it, so just go with it.
Jake has exhibited savant behavior with regard to paleontology. At age ten, his uncle and I took him to the Museum of Natural History in New York. He correctly identified every dinosaur skeleton before the guide did. He plans to study paleontology in Montana where the bones are. When he informed me of his plans, he said, "You’ll like Montana Mom.”
I said, “Hey, I don’t want to go to Montana!”
To which he responded, “You have to come, I don’t know where they sell eggo waffles.”
Well, I do love to travel. And I’ve never been to Montana.... And a man can’t be separated from his waffles. So I guess our travels will continue!
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