Posts tagged kids on the spectrum
Soup du Jour! Dad the Hero
Nov 30th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is one from Dan Coulter!
Dad the Hero
(by Dan Coulter)
Dads, did you ever imagine yourself as a superhero? Sure you did. I have a mental picture of you as a little kid, in your underwear, with a towel tied around your neck for a cape. You’re jumping off the bed and running through the house pretending you’re superman. In your mind, you can fly. You save the day.
The circumstances change, but we all hold onto a bit of that hero dream.
We dads have another dream that starts when a child is born. What he’ll be like? How she’ll grow. What we’ll do together.
But when a child has Asperger Syndrome, that dream can veer off course.
It can be frustrating when he or she doesn’t follow the script in our heads, when he continues to do things after we tell him not to or when she can’t seem to understand things that seem obvious.
And let’s face it. Most moms are better at the unconditional acceptance thing than most dads.
Even if we love a child with Asperger Syndrome, we’re more likely to hang onto our expectations and occasionally be impatient as he grows older – sometimes more than occasionally.
That’s where the hero part comes back in.
On the real-world hero scale, being patient with a child is not the same as running into a burning building to save a life, but it’s still a challenge. It’s everyday heroism.
Everyday heroism strives to understand how a child with Asperger Syndrome feels when he tries his hardest and still gets teased or rejected by kids and criticized by adults. To accept that he can be doing the best he can –and still misunderstands what you want. To not just correct her when she’s wrong, but to help her practice doing things right, and praise her when she succeeds. To let go of old expectations, and help him live up to his capabilities.
The earlier we start the better, but it’s never too late to make a difference. To be the father he knows he can turn to. The father she knows she can trust.
Some dads are natural everyday heroes. The rest of us have to work at it. But natural or self-made, everyday hero dads often find their children succeeding in surprising ways. Sometimes in ways they never imagined possible.
If you’re not there yet, your family story is casting for a hero. And the part has your name written all over it. You can save the day.
Save the child.
Your child.
ABOUT THE AUTHOR: Dan Coulter is the producer of the DVD, “Asperger Syndrome for Dad: Becoming an Even Better Father to Your Child with Asperger Syndrome.” You can find more articles on his website at www.coultervideo.com.
Copyright 2010 Dan Coulter All Rights Reserved. Used by Permission.
Soup Du Jour! A Message from Maya!
Sep 28th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the thirteenth one from Maya!
A Message from Maya!
Dear Karen
Thank you so, so, so, so much.
I can’t find the right words to thank you because I think this word is nothing compared to what you have done for me. You have opened my eyes to a new world. Before communicating with you I was very sad because I felt lonely. I thought that no one else understood me or how I felt thinking of my child’s future. How can he manage his life or even live without me – I couldn’t sleep at night thinking of how he will live, study, get married, or have children in the future?
Maybe you think I exaggerate but I really want to ask you something and I want you to answer me honestly in a personal message please. “My child is diagnosed with an autism spectrum disorder, do you think that he has a chance to be cured? I mean to be treated and live a normal life just like any other child? Please answer me and thank you very much.
You are an angel .
Maya
Soup Du Jour! Cookie-Cutter Mentality Needs to Go!
Sep 11th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the twelvth one from Holly McBain!
Cookie-Cutter Mentality Needs to Go
(by HollyMcBain)
Just now I was researching potty-training because my 6 year old son, who is diagnosed as High Functioning Autistic, still is not using the toilet. He turned 6 on July 29th and is in the 1st grade. Besides being HFA he also has a speech delay including cognition issues. When he was 3 years old he had a vocabulary of about 12 – 15 words. After trying a variety of private and semi-private therapies, we placed him in the PPCD program with the school district and he blossomed. Needless to say he and his brother (Asperger’s Syndrome) are the light of our lives.
Anyway, back to my point about cookie-cutter mentality needs to go: while researching potty-training for people with ASD I once again ran into the proverbial “brick wall” of just set up a routine and stick with it” approach. I really do not understand why that when dealing with a “spectrum” disorder, intelligent professionals want to place everyone in one category. Both of our boys are on the Autism Spectrum with both being extremely intelligent; but that is where their similarities end. From there, they are as different as night and day, so why would one process or plan work for both? It wouldn’t.
How I work with, discipline and deal with them is very different – not only because one is 6 and the other 8, but also because each one is an individual with their own characteristics, tastes, idiosyncrasies and issues. I realize that no one book is going to encompass the litany of possibilities to choose from when developing strategies for your child, however listing in one paragraph how to develop a potty-training routine using a cooking timer is just a wee bit simplified and seems almost condescending because essentially for me it is “been there, done that”.
I am looking for help to understand my child’s issues with potty-training and help him understand what I am trying to explain to him. Have you ever tried asking someone “are you getting the pee signal” who is autistic? God knows what he thinks I am asking – it could be anywhere from thinking a bell should ring to getting a phone call or some acute pain. I have no clue if he really understands because he cannot enunciate to me what is or is not happening just prior to soiling his diaper. So to offer advice like “oh just use a timer and set up a schedule” is useless information for me.
This is what I mean by cookie-cutter mentality – if every person on the Autism Spectrum is different in their issues, why aren’t there a greater variety of ways to help them? You know we are taught not to “pigeon-hole” neuro-typical children because everyone is their own individual entity. Maybe it is time this was extended in greater detail for ASD kids and adults.
Soup Du Jour! The Terrible 13′s
Aug 16th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the tenth one from Jeff Stimpson!
The Terrible 13′s
(By Jeff Stimpson)
My son Alex, who has autism, just turned 13. Hair is sprouting all over his body. He’s started using roll-on. His voice has deepened. Parts of him are suddenly stunningly large. Others don’t seem to be growing at all. “He must be getting very … wilful,” says his service coordinator, looking at him in our living room. He’s watching Elmo. I can see his first moustache from here. Yes.
It seems a blink ago that he was a premature baby in an isolette in a neonatal intensive care unit. It was 13 years ago. It was a blink ago – about 15 minutes, actually – that my wife Jill called to say: “We haven’t had a good outing. He’s lying down on the line for the registers and I’ve tried taking his ear and it didn’t work. People are staring. It’s going to take a special set of people for him, and we’re not them.”
“I didn’t like it when he was five and he drank out of puddles, but nobody laughed at him and nobody made fun of him,” Jill says. True. But in the past six months Alex has become more embarrassing than at any time in his life. People are starting to look at Alex, then look away, then look back, as if at a train wreck, says Jill. They never used to. He pitches forward and back on stiff legs. His voice is getting loud and embarrassing as he sprawls on the floor of a store and bellows “Banana!” Jill says that during their recent outing Alex had to use the bathroom. Jill can’t go in the bathroom with him anymore, of course. She says a boy about 13 came out while Alex was in there. “You could tell he didn’t want to be in there with Alex,” Jill says. “People are starting to react to him.” She also said her legs hurt when she returned with him.
His school – school, that bastion of sanity in Alex’s life – has reported that he needs a 1:1 para-professional to shadow and monitor him so he doesn’t bolt to the playground or barge into counselling sessions with students or into classrooms. “With hormones and puberty and everything going on, it’s becoming a little too much for him to focus,” said his head teacher. Indeed.
An adult recreation program I tried to get him into last month sure reacted to him. They found him in a pre-school room on the fourth floor, with its huge red rubber ball and Elmo books. We all watched him press the ball to his midsection and flip through Elmo books. “He’s obviously more comfortable in this environment and we’re not set up to deliver that,” says one staffer, speaking of the big ball and the Elmo books.
He grabs his crotch these days and purrs “Mooooommmmmmmyyyyy …” We tell him to do that in private, when he’s alone. He does it on the sidewalk, too, between bouts of running ahead of us, shouting, bobbing and weaving and biting his arm. “God it’s embarrassing,” says Jill.” I hate to say it, but it’s true.” He seems to prefer men as companions — I sure found females confusing at 13, too — and when out with a female sitter recently darted into a health club kids’ room and started pressing a big ball against his midsection.
Can the teachers, can anybody, help him understand that he shouldn’t leave our apartment and bust in on neighbours? Stop biting his arm when frustrated, stop unravelling and ripping his own T shirts? Can they help him understand the dangers of traffic? “I can’t have him run across the street when I have five kids back here on this corner,” his teacher says.
Busting in at home: There was the couple that we think was having sex. The young woman in the middle of her first brunch for friends in her newly renovated two-bedroom. There was the couple with the great cats. The family with all the expensive ship models in glass cases that I could picture Alex missing by a hair as he darted into their apartment. There was the surgeon. “Do you need any help?” he asked. He wasn’t smiling; neither was his wife. “He took my hand and tried to go right in,” Mrs. Surgeon said. Alex was sprawled on the carpet outside their door.
I bought three white plastic doorknob covers for babies (babies, for Christ’s Sake; Alex is shaving.). Aunt Julie suggests a combination lock. Ideal, but we checked into this back in 2006 when Alex first bolted. You want a what?, the locksmith asked. He figured, after some head-scratching, that a combo lock wouldn’t work that way – the bolt goes into the door jamb the wrong way– unless installed upside down.
I’ve sent notes to neighbours, and made Alex apologize in person. “I’m sorry,” he says; I stand there wondering if he knows what the syllables mean. Jill suggests that when he gets home from school, we take him out. “Take him floor to floor. Let him get it out of his system.” This sort of works for one night.
“Will he get over this?” they asked at a sexuality and autism workshop a year ago. This is the question I asked a prospective babysitter (…babies, for Christ’s Sake…) whom I interviewed this afternoon. You can expect more aggression, said the first. Sure it’s normal, said the second. Great, but once again in my son’s life I feel myself groping for what others find normal.
jeffslife.tripod.com/alextheboy
Twitter Name: Jeffslife
“Alex: The Fathering of a Preemie” (on Amazon and at academychicago.com) and “Alex the Boy: Episodes From A Family’s Life With Autism” (available at vervante.com and on Amazon)
Soup Du Jour! Judging a Book by its Cover!
Jul 26th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the eighth one from Caroline Washington!
Judging a Book by its Cover
(By Caroline Washington)
That saying was told to me as a child, but it’s a saying some of us have forgotten. When I go out with my son in public most people automatically assume that I am a bad mother because Uriah has tantrums in public. My son is a normal little boy in so many ways, but I know that my Child has Autism Spectrum Disorder.
Uriah was diagnosed with Autism in June of 2000. As a mother, I felt guilty because I thought it was caused by something I had done. Of course, now I realize that I couldn’t have done anything to control the Autism. Yet, that doesn’t stop the hurt that I feel. With Autism, I find myself struggling to keep my child’s life as normal and stress-free as possible.
Like many, I had never heard of this disorder before 2000. It took a neurological doctor to explain that it is a developmental disability. Uriah’s mind works like a two and half year olds. He has little or no speech, he tantrums a lot, which has led to a behavioral problem. As a mother, I want him to experience the same things other kids do, but I find it hard to do so. Not because the kids aren’t accepting of his Autism, but because of the adults. I guess they feel that if Uriah plays with their kids in the park, then their kids might become “special” too! Things like that have not stopped me from taking Uriah out, I just explain to them that Uriah’s brain works a little different from everybody else’s.
In December of 2000, I decided to leave my job to care for him full-time. It hasn’t been easy going from a two income household down to one. I guess, in my mind, there was going to be a system set up to help me financially. I quickly discovered there wasn’t. In the beginning, Uriah had qualified for SSI disability, but when my husband received a raise at work he was cut off.
My son is now in a public school program for special needs children and I keep being told he could use extra speech and occupational therapy, something my husband’s insurance does not cover. I find myself working with flash cards and the like at home, hoping this will help until his Autism Waiver is approved. (I have been told this can take up to seven years). I never regret that Uriah is here, because I realize that my son gives me a purpose.
My life’s joy is to help Uriah succeed in whatever he wants to do now and in the future, and to let other people know that when they see a child acting out in the store or whatever, don’t just assume it’s bad parenting. It just maybe a special child acting out…and they cannot help themselves. That’s why it’s not good to Judge a Book by its Cover.
Soup Du Jour! Patience Really is a Virtue!
Jul 19th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the seventh one from Matt McLain!
Patience Really is a Virtue
(By Matt McLain)
As parents of a special needs child, we hear the word, “patience” every day and sometimes even more. But, have you ever really stopped to focus on just what that word means when dealing with the day-to-day struggles of caring for your special needs child?
As a father of a child with Autism, it took me quite some time to really figure out the importance of exercising patience with my son.
Lately, I have noticed when my son goes into a tantrum or outburst, instead of becoming frustrated and going from 0-60 in mere seconds…exercising patience is really, as they say, a virtue. If I step back and count to ten and calmly ask him to show me what is wrong, or show me what he needs, he will calm down much quicker and proceed to communicate with me the best way he can. I have to remember, it is just as frustrating for him to not be able to communicate with me as it is for me to be able to understand his outbursts and communication struggles.
Exercising patience aids in opening up a communication doorway and, in my opinion, strengthens the bond between you and your special someone. I believe our children have a unique and intelligent understanding of the world around them, and we, as parents, just need to be more patient to further understand what they perceive as normal, every day.
So the next time you feel frustrated or hear someone say, “be patient,” really stop and give it a try; it just may be the key to unlocking some of the mysteries behind the communication barriers with special needs children…and maybe even relieve some of the stress you deal with every day.
Matt McLain
Owner – Ready, Set, Bloom, LLC.
www.myreadysetbloom.com
Soup Du Jour! The Lack of Fairness in Life!
Jul 14th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the sixth one from Monica Johns!
The Lack of Fairness in Life is a Good Lesson to Learn but a Tough One to Understand
(By Monica Johns)
The soccer ball is coming fast down the grassy field. The boys are all trying to defend it by kicking the ball away. My 11 yr old HFA and asperger son is on this defensive team. He is ready and kicks the ball out from between the offensive players’ legs. What a save right?
My autistic sons’ stories don’t generally end that simple. For some reason a “but” appears after each moment in time and in this case there is no disappointment.
But – then the offensive boy calls my son a name. It doesn’t matter what the name is. My son no longer cares about the soccer ball. He heads straight for the player and pushes him to the ground. Of course this is not permitted in a soccer game and he gets carded and sent out. His frustration level is high now and he can’t calm down. He runs away to get all of the emotion out of his body/head and later calmly returns.
Everyone is wondering what happened.
It is tough for our special needs children to be involved in team sports. Team sports should be a rewarding and fun time. I have spoken to many parents that don’t involve their special needs kids in team activities anymore. It just became too difficult. I am sad about this. For one, it is such a good way to get the exercise and high level of physical activity our kids need. Secondly, being part of a team typically enhances friendships because they have this sport in common and enjoy it together. Generally our special needs kids are lacking in friendships due to the inability to understand the complex relationship in being and having a friend or at the other end of the spectrum because they are the ones being teased, taunted and bullied.
As my son grows older in age, his maturity grows at a much slower rate than the other boys on his team. He has asked that we not tell the others that he is autistic because most team players do not understand autism and don’t want to be educated on it. Now at the soccer games, I am fearful that he will act out and/or say something inappropriate. He will outcast himself as he has done so many times before unbeknownst to himself. We attempt to explain to him these non-existent social rules. He listens and says that he understands but as soon as he steps onto the field, they are forgotten or missed. He loves this game and he is a good player. In the end all he wants from the game is a friend – but the playing field is not fair just like in life. The lack of fairness in life is a good lesson to learn but a tough one to understand especially for those with special needs.
Soup Du Jour! Autism Is Definitely Not For Wimps!
Jul 5th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the fifth one from Nancy Bernotaitis!
Autism Is Definitely Not for Wimps
(By Nancy Bernotaitis)
I’ve heard it said that parenthood is not for wimps. If that’s true, then parenting a child with autism is definitely not for wimps.
With two fairly well-adjusted kids and a marriage intact, I thought I was pretty good at the mommy thing. Then God threw us a curveball. Remember everything you’ve learned about being a mom? Well, throw it out the window because it won’t work. Your special child will not care how his behavior affects anyone else, if “everyone in the store is looking” at him, or if he should be ashamed of himself. He’s not. Being the parent of a special needs child is going to challenge your imagination, creativity, and patience more than you ever thought possible. You will be forced to look at the world through his eyes and figure out how he thinks, how he sees the world, before you can begin to figure out why he does the things he does. Then you’ll have to adapt your way of doing things to accommodate that.
For instance, when we began toilet training our youngest, we would sit him on the toilet backwards, which required complete undressing from the waist down, to be sure his aim was on target. After a year of this, we decided it was time for him to stand up like all the other boys. Our older son had made this transition on his own so we figured it was just natural. Lesson #1, almost nothing comes natural to our special kids. When we tried to stand him in front of the toilet, he would scream bloody-murder until we gave in, mostly out of fear, and quickly placed him on the toilet backwards. So I analyzed the situation, looking at it from his point of view. He obviously did not understand what we were asking of him. I then took a piece of construction paper, traced around his feet, stuck it to the floor in front of the toilet with contact paper, and waited for nature to call. When it did, I walked him into the bathroom, stepped onto the outlines with my own feet, and then backed up. I, literally, saw the lightbulb go on over his head and heard an audible *ding*. He then stepped into the outline of his own feet and tinkled in the toilet. Problem solved! It was a miracle!
Nothing in my life before I had a special needs child prepared me for the life I have now. It’s stressful, chaotic, frustrating, and challenging beyond belief. When I was the mother of two typical kids, I was arrogant, I’ll admit it. I breezed through the day kissing boo-boos and packing lunches like Mary Poppins. Then I fell down the rabbit hole. It’s as if everything has been magnified. It’s 100 times harder than parenting a typical child but when joy comes, it’s overwhelming. I get sad when I realize that parents of typical kids just have the typical milestones to reach. Nothing spectacular, everyone does it eventually. They rarely get to feel that they’ve witnessed a miracle. With autism, there is no roadmap so everything is a surprise, everything is huge, everything is a gift. Don’t get me wrong, I enjoyed my typical children as they reached each and every milestone, but with this last one I get to witness a miracle every single day.
About the author: Nancy Bernotaitis is the mother of three children, two “typicals” and one diagnosed with autism. She provides in-home childcare specializing in special needs. Nancy currently volunteers as President of the Dayton Chapter of the Autism Society of America and sits on several committees including the Miami Valley Autism Coalition, the Ohio Autism Coalition, and the Parent Advisory Council. She lives in Dayton, Ohio with her husband of 20 years, her 3 kids, an autism service dog, and 3 cats.
Soup Du Jour! Children Are The True Educators
Jun 28th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the fourth one from Cristy Bobbett!
Children Are The True Educators
By Cristy Bobbett
I have been a special education teacher in fully inclusive classrooms for the West Genesee School District since 2003. Prior to that, I taught at Edward Smith Elementary School in the Syracuse City School District for 12 years. My students have Autism, Down Syndrome, CP, ED, etc. Many of my students are/were non-verbal, and many of them are no longer non verbal. Many were non readers, and now are reading. I have been blessed in my job and thought I would share with you some of my thoughts.
I have been working with and teaching children with special needs for the past 18 years. In that time I have come to the realization that the children, my students, have actually been teaching me. I will never be able to fully explain in words what these beautiful children and their families have done for my perspective on life as well as for the beauty that I see every day in people. Children with special needs have so much to teach us if we allow them to.
I have learned through doing, that fully inclusive classrooms (if done right) are not only successful places for all students, but actually amazing places where everyone; students, teachers and administrators become better learners, teachers, friends, and people.
I have learned that there are no limits to what children with special needs can do. We as educators, parents and neighbors are the ones with limits. Limits that we put on children when we can’t see the way to make a situation work.
I have learned that the families of children with special needs are some of the most special families this world has to offer. I have witnessed unbelievable acts of selflessness, love, courage, perseverance and grace from the parents, grandparents and siblings of the children I have had the honor to teach.
I have learned to think deeper, analyze more critically and prioritize the true goal of a situation, job or experience is, in order to adapt or modify myself, the surroundings, materials or curriculum, so that all children can reach their full potential every day.
I have learned that sometimes the best thing you can do is back away and let children figure things out for themselves. Young children can and will make friends everywhere they go, especially if we, the adults get out of their way.
I have learned that there is no other job in the world that would allow me to spend my time trying to help others and better other people’s lives while my life is actually being improved and bettered in ways that can not be measured.
I have learned to be thankful for everyday, no matter what it brings and to look forward to each September hoping that I can give as much to the children and families that walk into my classroom as they give to me.
Cristy Bobbett
M.S. Special Education
Soup Du Jour! Autism Really – Ryan
Jun 20th
As a Chicken Soup co-author I’m always looking for your stories to share with everyone else. Not too long ago I did a “call out” to my members asking for heartwarming stories and was overwhelmed with over 2500 submissions. I know you will enjoy hearing from others so I am going to be sharing them with you on a weekly basis. Here is the third one from Jennifer Thomas!
AUTISM REALLY – RYAN
By Jennifer Thomas
It was December 8th, 1996 when my beautiful big boy Ryan was born. I was a happy mother (25 years old) of two beautiful children. I was also a certified N-8 teacher and a wife at the time. I could not have been happier.
The first month brought on an MRI with his head growing too much in the front and on both sides. My husband at the time chose not to come, as he did with the rest of Ryan’s issues. My older sister took us and helped us through it. He has hydrocephaly, where the fluid levels never rose. Thank God.
After that, his first year of life was normal to me. My older sister also had a child two months before, so we could see a difference; yet we chalked it up to a boy and a girl. He hit thirty pounds a little after 6 months. Then on his first birthday, he received the chicken pox vaccine. Immediately he spiked a high fever (106) and we ended up in the hospital for 3 or 4 days.
One month later, he was a different child. He would not say the words he already had (mama, dada, baba, cookie, etc.). He started screaming for hours (4+) on end. He would not look at you when you called him. He would do dangerous things and get hurt, without feeling it. He would not listen to a story, nor play with toys typically (spinning wheels, lining up, carrying the same thing). He would hurt himself and others and was a very big child. Another month went by and I was beside myself. This is where my little sister came into play. She was finishing up with her Speech Pathology and sent me an article in February of Ryan’s second year of life. It was about twin girls with Autism who exhibited his behaviors. She told me to get him tested. My initial reaction was that she was crazy; yet I trusted her knowledge and spoke to his pediatrician. I was then told that we could not until he was 18 months.
At the 18 month mark, I took him to the best hospital, Hackensack University Medical Center (Don Imus Building) to get the testing. What a long day for us all. The reports came back as “Severe Autism”. I cried like a baby, for my baby. They had many suggestions to do immediately. I was then 26 years old, and had no idea of what Autism truly was. I researched everything, stopped working, and began his intensive therapies within the next month.
When hit with something like this, and you want to read about it, I couldn’t. Every book began with “they will never this or that”. My dear friend Chris gave me a book called “Let Me Hear Your Voice”. That is the only book I ever read because the mommy in the book helped more than one child with a positive outlook. I was driven at that point to do the same.
I took him to two separate facilities to concur with the initial diagnosis (another hospital and an independent neurologist). They both said Autism. His neurologist told me “you need to get this now because his mind is like play dough where you can form it; however after 5 years old, he will keep whatever symptoms left). I began my hunt for his intensive therapy. I asked one of my best friends, Chris, with much begging and pleading (because we were friends and she thought it was a conflict of interest) to be his private Speech Pathologist. She agreed. Also, with advice from my little sister, hired Allegro outreach to come to the house for intensive ABA therapy. This is where Jackie Dubil came into our lives. She loved him like he was hers. She named her son after him too. I also contacted Early Intervention (which at that time did not provide ABA, yet gave him Speech once or twice a week for an hour, and OT once a month). That is all they gave him, which prepared me to deal with the public sector of special education. I supplemented it with sending him to a private preschool the second half of the day.
He received these therapies (with funding from my mother’s family – thank you) until he was three years old and had to enter the school system. Entering the school system offered either sending him far away to an Autistic school or the 2 hour a day Preschool Disabled program. I chose the latter because he needed not to be with other children with Autism and learn their behaviors.
Throughout all of this, I learned the special education law inside and out. I researched schools, therapists, and medical and holistic options. I needed the knowledge to fight for my boy to get what he needed.
He entered regular Kindergarten (1/2 day) with an aide. I went back to work (with a blessing from a dear friend) at this point. My friend, Dara was working as a special education teacher for the Commission for our county and she was leaving. I was hired as an emergency certified special education teacher, with nothing but what I taught myself.
The story can continue, and I tried to keep it short, but parents who deal with this have long stories to tell. He is now entering 8th grade with inclusion academic classes. He is doing well, playing sports, has friends, appears typical, and continues to understand his abilities.
I have to have a special paragraph for my daughter. How it affected, and still affects her is a whole different story. She is 2 ½ years older than him. She was hurt by the attention he got from everyone, and still is. I am sorry baby. It is the cards that were dealt to us as a family. You may not understand Autism fully, but you understand it at your level. I love you.
I am a special education teacher in Paterson for the past five years (and have mostly children with Autism). I divorced my husband three years ago (I thought I could beat the odds for parents with special needs children, but I couldn’t). I am raising two wonderful children in my home.
Autism is something you will never understand unless you live it! Love to all parents, siblings, family and friends that live it. Do what you have to for your children.
