Categories > Stories From the Heart
For most parents, taking a child to a Saturday afternoon flick is little more than a way to kill time, of entertaining their little ones with minimal parental exertion, and even as a way to regain their sanity on a busy fun-filled weekend. For one Dad and his very special boy, however, a Saturday matinee became so much more than just a weekend excursion. Watching a simple children’s film together fulfilled fathers wish and gave him an afternoon he will never forget.
For proud dads, certain father-son activities are a rite-of-passage in the parent-child relationship. While my son was still swimming and kicking in his mother’s humungous abdomen, I dreamed of taking him to his first baseball game, first camping trip, and even his first movie. This was, of course, before April and I knew we would be blessed with a child who, despite having special-needs, would also bring abundant joy and blessings to our lives. He was more precious than either of us could have ever imagined a cherished gift from God.
Because of Shamus autism, most of these traditional father-son outings, which most parents take for granted, never became a reality. How I wished I could take my son on an exciting train excursion to a San Francisco Giants game, buy him a hot dog, Coke, and Giants cap, and together experience an incredible baseball game. My eyes, although sometimes blinded to his limitations, were certainly open enough to realize that such an activity would be disastrous, considering Shamus often disruptive autistic behavior.
Upon seeing promotions for the upcoming motion picture Curious George, however, I knew it was finally time to give Shamus a chance at a father-son outing. This film, I reasoned, was a kid’s movie. If he does misbehave, the other patrons, being parents of small children themselves, will certainly understand. Besides, the running time is less than ninety minutes certainly short enough to hold Shamus interest, I figured. Even if Shamus didn’t like the show, I certainly would, since that playful critter named George was a favorite storybook character from my own childhood.
Shamus, I asked. Do you want to see Curious George with Daddy? Yyyyyyyyes, he replied, in his unique, signature style, answering in a way that only my special Shamus can.
He is not ready, April said. Be flexible, and take him out of the theater if he misbehaves, she advised. Being the proud father, however, I was more optimistic, and knew it was time for Shamus to see a movie with Daddy – a film about a mischievous monkey named Curious George.
Driving Shamus to the cinema, my spirits were higher than the white puffy clouds floating so far above our heads. I would finally have my chance to do a real Dad activity with my precious son. After parking in a crowded downtown garage, we strolled to the theater hand-in-hand, passing bustling restaurants and traffic-jammed streets of roaring buses and blaring horns. After finally arriving at the box office, I shouted through the microphone, One adult and one child for Curious George, please. Words cannot describe my incredible pride as I traded my greenbacks for two theater tickets, which I immediately handed to my little boy to give to the doorman. We then wandered to the small auditorium where our chosen feature was showing.
After the lights dimmed and the projector started to flicker, Shamus sat and absorbed the movie. No, he didn’t make a fuss. He didn’t ask to leave, and he didn’t require my constant attention. None of his mother’s predictions materialized. What Shamus did was watch the naughty monkey named George play peek-a-boo with a yellow safari hat in the African jungle, paint a downtown studio a kaleidoscope of vibrant colors, float aimlessly over the Manhattan skyline clutching a rainbow of colorful carnival balloons, and generally make life very interesting for himself and The Man in the Yellow Hat – who eventually grew quite fond of George’s frolicsome behavior. The movie screen sparkled like a brilliant display of fireworks on a balmy summer night, and Shamus, although not following the storyline, was mesmerized by the symphony of color splashing on every corner of the silver screen, like a painter’s canvas coming to life. It was a pleasant and enjoyable time for both father and son, and an unforgettable experience. While enjoying the dazzling film, I realized that, sitting next to me was my own little monkey who, like Curious George, also likes to find mischief, always warming my heart in the process. I was ecstatic, sporting a huge grin from ear-to-ear, as my precious son and I watched our first movie together. It was a day I will never forget and will cherish in my heart forever.
A few days later, I asked Shamus which movie did you see with Daddy? He replied, in a way that only my little boy can, Monkey Movie. In Shamus eyes, it was a Monkey Movie. In my eyes, however, it was something so much more. It was a special gift from a special boy – a Saturday matinee his proud father will never forget.
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.
From the beginning Nevin would grab a broken twig or any long branch and would swing it back and forth. We did not take notice of it. Going to the dollar stores or any kind of store that display play swords, he will jump at the opportunity to have us purchase it. At home, he will swing it back and forth trying to imitate the character he plays on one of his PlayStation 2 games. If he had another sword to offer, he will then play sword fighting game with one of us.
A video movie of Zorro was on the stands at Wal-Mart. We purchase the video and took it home and he watched the video almost every day. And every single time, Nevin will imitate Zorro’s actions. Last Halloween, he dressed up as Zorro.
If he is not playing around with a sword, Nevin is in the computer on youtube looking at cartoons and watching some of Zorro’s movies from the past. One day, he googled fencing on the net and a site here in Edmonton popped up on the screen. It was engarde fencing and they were on the northwest of Edmonton. He was very excited to let us know what he has discovered. The timing was just right because their new session was just about to begin.
First, I enrolled him on the over 12 beginner class. Observing him for the first two weeks, I figured that he just doesn’t fit there. I spoke to the coach/teacher that he has a difficulty in understanding. The class had a lot of students and the teacher/coach tried to modify and simplify the class but it was just too hard for Nevin to understand the concepts. He would try to imitate one of the students but did not really pay attention to the teachings. When the coach tried to let him does it on his own, he could not do it. I had to a couple of times intervened.
They had a parent/child session class on Saturdays and there was an opening. We transferred to that class and attended every Saturday from 10:30 a.m. to 12:00 p.m. A typical class always starts with the stretching and then warm-ups and then doing the fencing concept, like how to do the lunge, proper leg stance, defending yourself with the sword and how to strike your opponent. There were number of parent/child attending in that class. Just before this session was about to come to a close, there was a tournament and it was opened for everybody who was a member. At the tournament, Nevin went against students that were there for a number of years already. He scored and fared well for a new comer. He won one and lost the rest. Winning that one put a big smile on his face. He made it through to the second round but that’s where it ends. He enjoyed every minute of it and walked out with a lot of pride and satisfaction. Before the tournament, he kept telling me that he will win a medal. There is always next time.
We purchase the complete fencing equipment gears so we could start practicing at home to what the coach taught us in class. Every day, I could see improvements in his fencing.
For our second session parent/child, about halfway to the session, the coach suddenly quit and had to move on. The parent/child session for the weekend was cancelled. Nevin had to take one of the classes that were open for his age and status. No parent was allowed to participate. I was just a spectator. He had to attend every Thursday evening. They had one of the young advance students who was designated as the coach, started teaching the class. Nevin and another kid was the only student in this class. During this session, he blossomed because the attention was to both of them. It was perfect. He quickly learned a lot and paid more attention. Regular School was coming to an end and most of the students attending other sports beside this had prior commitments. So, there was no tournament for the second session. On the last day of this session, the student coach created a mini-tournament for us. Two parents and two students, when this tournament was done, Nevins classmate came in first place, one of the parents came in second and Nevin and I were in third place. It was lots of fun and it was a blast. Nevin enjoyed every minute of it.
The third class session is about to begin on September 18. The parent/child is on again on Saturdays with a new coach. Nevin has been asking a lot about the class and looking forward to it.
By Neilzon Viloria
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.
Sometimes, God surprises us by giving an Autistic boy who had nothing but fear for His glorious creatures a new best friend: a gentle pony named PJ.
It’s was sunny Saturday morning as my stretch my eyes open after a long slumber. As I awoke, I heard the patter of tiny squirrel paws playfully darting back-and-forth across our humble roof. I was pleased, knowing my furry four-legged friends enjoyed my home as much as I did.
On this warm spring day, April and I took Shamus to visit a ranch for his very first pony ride. We hoped it would help him improve his fine and gross motor skills, learn to love and bond with a living creature, and, most of all, overcome his fear of animals. Hopefully, the encounter would be positive and Shamus would ride the creature each week as part of this ongoing therapy program.
Shamus, unlike most little boys, was afraid of dogs. Perhaps that’s normal for younger children, but Shamus was almost five. Even small dogs terrified him. We visited my brother last summer, whose charming cabin in the Idaho wilderness is a menagerie of cats and dogs. We tried our best to keep the scampering canines away from Shamus, but with the numerous two and four-legged creatures and the constant chaos, it was a difficult task. Shamus would just have to manage. He did, somehow.
Before we left for the ranch, April showed Shamus pictures of horses. “What’s that, Shamus?” Shed ask, pointing to a picture. “Horsie”, Shamus would answer. “What we are going to see today, Shamus?” she’d ask again. The answer was the same, “Horsie”.
Driving to the ranch was absolutely delightful. Although we barrelled down an interstate, it seemed like a quaint country road, with the sparse traffic, green rolling hills, and nearby mountains topped by giant redwood trees with a touch of coastal fog kissing the peaks. The ranch was just as picturesque, with a panoramic view of rolling green pastures and stately oak and sycamore trees. Whenever a horse passed our van, April would ask Shamus to turn his head and announce what he saw. The answer was of course, “Horsie”.
Soon, it came time for Shamus to meet the pony. “This is PJ”, the trainer said, introducing us to the creature and encouraging us to touch him. PJ was a gentle and patient pony, and being the ripe old age of 25, was quite laid-back as well. With all the hands stroking his tan colored hair, caressing his ears, and touching his nose, he was an extremely calm beast. He loved the attention and had a natural affinity for young children.
In a strange sort of way, he seemed to truly appreciate his important role in assisting special children like my little boy. We encouraged Shamus to pet the pony’s soft hair and fluffy white mane. Even I enjoyed rubbing his soft, silky coat. Living most of my life in the suburbs, petting a pony was a rare opportunity.
When it came time to mount the animal, however, Shamus resisted. The Monster called Autism reared its ugly head, and my special little boy transformed from a sweet gentle boy to a fighting maniac in a mere moment. For such a little boy, he sure can fight and is quite strong for his small body. He can certainly be stubborn sometimes (not unlike his father ).
After much cajoling and sweet assurances, however, Shamus eventually calmed down enough to allow PJ to carry him around the pen. Once Shamus became comfortable with the pony, he was happy. Actually, he was more than happy. He was ecstatic. As PJ and Shamus marched around the pen, April said to me See, he’s smiling. I looked, and sure enough, he was. He had a giant, playful grin on his face and a magical sparkle in his eye that melted my heart. He seemed like a different kid not the unruly, struggling 4-year-old that resisted mounting the animal just a few minutes earlier. That radiant glow never left his face.
In watching this sight, I realized that Shamus gave this creature the greatest gift of all: his unconditional love and trust and PJ cherished this. The beast walked proud and tall, knowing that because of his gentleness and compassion, he was able to gain the confidence of a very special boy. As far as PJ was concerned, he was a magnificent stallion carrying the noblest prince through the gates of a glorious kingdom.
But alas, even life’s most memorable moments must eventually come to an end. When it came time to dismount, Shamus stubbornness returned. He loved the pony so much, he didn’t want to leave. “Say bye-bye to PJ”, I told him. “I want ride PJ”, he would repeat over and over. “Next time”, we would reply, as we pulled him off the pony.
As we drove home through the green, rural countryside, Shamus repeated endlessly “I want ride PJ, I want ride PJ, I want ride PJ”, his chatter was almost nonstop. To most parents, it would be a major annoyance, but not to this proud Dad. It was music to my ears. My little Autistic boy, who was terrified of even the smallest dogs, had a new best friend a gentle pony named PJ.
By Patrick Paulitz
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.
Sometimes, a father and son, while simply smiling, laughing, and enjoying life together, discover a common bond, and create a touching and precious moment.
August in San Mateo means many things; warm days, cold nights, outdoor concerts, weekend camping trips, and of course, the San Mateo County Fair. Living down the street from the fairgrounds, it had been a tradition in our family to attend the festivities every year. Even when Shamus was a not-so-tiny newborn, I attended the fair by myself, sporting a cell phone on my waist to always be in touch with Shamus and his proud Mommy. This year was no exception, so we hopped in the minivan and made the one-mile journey to the San Mateo County Fairgrounds.
After arriving at the fair, we followed tradition and made a beeline for the food court, letting our noses lead the way. The food court is a lively gathering place, with brightly colored trailers sporting exotic banners advertising all kinds of delicious fare, with treats ranging from Greek gyros, Mexican tacos, barbecued pork ribs, pizza, cheeseburgers, Thai chicken, and everything imaginable deep-fried, from chicken, fish, hot dogs, bananas, zucchini, and even Twinkies and Oreo cookies. The aroma of all this food lingered in the still August air, inviting us to indulge in the pleasures of filling our stomachs with the tempting and downright fattening delicacies.
Nowhere else is there such a variety of scrumptious treats all in one place but the County Fair, and at no other time would anyone dare to savour such sinful delights as deep-fried Twinkies or Oreo cookies. Yes, the fair brings out the child in all of us, and takes us back to a time before calorie-counting, cholesterol-checking, and low-fat diets – and returns us all to our lackadaisical, carefree childhood. Too bad it only comes once a year.
After stuffing our faces with notoriously greasy County Fair delicacies, we took Shamus to a children’s play area. Here, the little guy could ride toy cars and climb inside a real working ambulance or helicopter, as well as play tiny-tot basketball or swing a hula-hoop. He could even gaze at a moon rock from an Apollo mission. Of course, all our special Autistic boy wanted to do was ride a toy car, in aimless circles around the small room. Soon, April decides to go home, leaving Daddy and Shamus together at the fair – just in time to visit the roaring and electrifying fun zone.
Ah, the fun zone. Like the food court, the fun zone is also filled with sights, sounds, and smells that bring back childhood memories, and this fun zone is no exception. Sounds of screaming children and adults, barkers inviting carnival-goers to try games-of-chance, the smell of hot dogs, cotton candy, and popcorn, and the sight of brilliantly colored attractions that spin and twirl riders, turning them sideways, upside-down or simply dropping them from great heights are all a part of this carnival experience. Of course, there is also the traditional Ferris wheel, House of Mirrors, and bumper cars. Yes, this fun zone is an important part of the County Fair, and to experience it is to relive an integral part of American culture.
Fortunately for me, the father of a very special Autistic boy, this carnival had lots of rides for the little ones. First, I emptied my wallet of several greenbacks for an all-day wristband so little Shamus could compulsively ride the attractions over-and-over without me having to constantly return to the ticket booth, with Shamus tugging one hand while I juggle my wallet in the other, hoping to keep the little guy from rambunctiously scampering all over the fun zone. Then, one-by-one, I put Shamus on the rides.
Most of the children’s attractions revolved in endless circles, and included bright pink elephants, buzzing bumblebees with a kaleidoscope of colors, and roaring fighter jets of sparkling blue. There was also a tiny train, child-sized Hummers, a miniature green dragon roller coaster, and carousal with vibrantly colored horses galloping up-and-down, as if marching to the beat of the lively calliope-like music. All of these attractions were brilliantly colored and played pleasant, uplifting melodies. As Shamus enjoyed the attractions, which I chose for him, he was always happy. Not ecstatic, mind you, but happy just the same. After all, he is a very happy-go-lucky child, and nothing seems to upset him too much.
Finally, I decide to let Shamus try the bumper cars. Even as a young adult of twenty-something, I would sometimes go to the local carnival by myself and ride various attractions, and my favourite was always the bumper cars. There’s something special about driving in endless circles, colliding with complete strangers, and not worrying about insurance companies or body shops. To me, the bumper cars were always special, so it only felt fitting to let my special son share this experience with me.
After buying ride tickets and waiting in a long, snaking line, we finally climbed into our bumper car. Almost immediately, I felt like a child again, and could hardly contain my delight as I waited for the ride operator to flip the magic switch that would bring the bumper cars to life. Before long, we were moving, backwards, forward, and sideways, around-and-around, constantly hitting the side railing and other bumper cars.
As I was driving the special cars, I noticed something. Every time we collided – every single time – Shamus giggled and laughed and a huge smile appeared on his face. He, like his Dad, loved bumper cars. He laughed out loud for the first time all day. I was elated. It put a smile on my own face, knowing that my son, my special Autistic son, loved bumper cars just as much as his father.
The experience, although probably only a few minutes long, seemed to last forever, and, to be honest, I was hoping it would. But alas, all moments in life, no matter how special, must eventually come to an end. When the time came to disembark the tiny cars that Shamus and I loved so much, Shamus was very cooperative. He grabbed my hand, climbed out, and followed me to the exit.
Soon, we were again strolling throughout the carnival grounds. While Shamus and I were aimlessly meandering around the fun zone, I felt something. It was the child-sized hand of a little boy, my special little boy, gently tugging my T-shirt. Then, with his small petite voice, he said something, which, unintelligible to most, was crystal clear to me: “I want more”.
“You want more what?” I asked him, knowing full well the answer in my heart. He replied “I want more bumper car”. My heart melted as the huge smile reappeared on my face. “You want more bumper cars?” I asked. “Yes”, he said, in a way that only my special Shamus can. “Okay”, I said, as I dabbed my eye with a handkerchief to dry the tiny tear that was starting to form. “We’ll have more bumper cars”, I said as we headed to the ticket booth to purchase more ride tickets for Daddy.
We rode the bumper cars three times that day. Every time our car collided, Shamus continued to laugh and smile and giggle, like any five-year-old child should. And, after every ride, Shamus always said “I want more”. I admit I actually felt guilty not letting him ride a fourth time. But, like happens so often in life, my wallet ran empty. It was just as well, though. We both had a wonderful day eating junk food and enjoying the carnival, and Shamus and I shared a most unforgettable father-son experience: butting bumper cars at the County Fair.
By Patrick Paulitz
Imran, better known as Imi is my wonderful 21 year old son. He also happens to be Autistic. He also happens to be plenty of other things too, smart, funny, cheeky and delightful…..although sometimes he can also try the patience of a saint…! I am reluctant to label him as my Autistic son, because Autism does not define him, he is a tapestry of many things and titles, as are we all.
Firstly I cannot comprehend that I have a 21 year old child, in my heart I am not even 16! He arrived in this world on an October morning and the sun shone every time I looked at him. He was absolute perfection in my eyes and I could not glance away from him in case I missed an expression, a sneeze or a yawn.
For the first year he was pretty much strapped on to my body most of the time and that was comforting for both of us. Somebody told me shortly after Imi’s birth that the world would not exist for the first 6 months, but I can tell you it was a year before I read a newspaper or listened to any current events, the aliens could have landed and taken over and I would have been oblivious.
Life was quite idyllic, I was fortunate enough to be a stay at home mom and I truly valued every moment. Imi passed all the milestones, and until 18 months there was not a flicker or trace that there was anything wrong, neither by us, or any professional that he came into contact with. He began to babble and we felt that speech was round the corner. When it did not come we entered the secret world of Special Needs. It is not really visible but when you search it out – it can overwhelm you.
Our life took on a different beat to the one we had imagined. As parents we visualise all the milestones that our children will pass and as each milestone slowly slides away from your fingertips, a different feeling emerges, one of grieving, a loss, but you are really grieving for yourself, the parent you wanted to be. The child has not lost anything, the child does not know that you were looking forward to taking him to his first party – but he enjoyed playing with the swing doors more than with the other children.
He will never understand the pain it caused when he was being oblivious to you when you returned home from a long trip, and he was more interested in the toy car or a paper clip, never smiling at you spontaneously, never really showing pleasure or need.
These are all needs within us that we deem make us good parents, but they are really conditions. The most beautiful thing about having a child with Autism is that you learn the meaning of unconditional love.
A whole new language emerged in our vocabulary, Speech Therapists, Educational Psychologists, Psychiatrists, Behavioural Therapist. Most of our new words and job titles ended with therapist. Auditory Integration Therapy, Stem Cell Therapy, Hyperbaric Therapy even Hormone Therapy (Secretin),- a weird and wonderful cocktail of words and promises of a better future for you and your child… the truth is that there is only one therapy guaranteed of a result – and it is plain and simple LOVE.
In all his twenty years, I truly believe that each therapy has a well deserved place in Imi’s improvement and enhancement but the one thing that has truly made a difference is one on one therapy. This can be achieved in any situation, with the parents, teachers, therapists, siblings, friends, and even chatting to a stranger at a bus stop or in a restaurant. The concentration of one human being on another human being, listening to every word and inflection of sound and most importantly eye contact and expression can only be successfully achieved one on one.
When Imi was four, I began to fear my child and doubt myself believing that “professionals” knew best. Then suddenly during one of those moments of darkness, I had an epiphany, I realised that no one, however well qualified could know my child better than me.
With that nugget of strength we moved on in leaps and bounds, Imi felt my inner confidence and began to progress. The confidence that brings is reflected in the child, Imi could no longer sense my insecurity so he began to flourish. I realised that I was the expert on Imi and the best that the professionals could do was assist, advise and facilitate his progress with my guidance.
Imi said “Mommy” for the first time at 4 years old. He is now 21 years old, a verbal, kind, mischievous, routine led, funny, happy and sometimes complicated young man. He is also one of the most humorous, interesting and unusual people that you would have the good fortune to meet.
The biggest part of his story is not the Autism but Epilepsy, at 14 he was struck down with his first seizure and unhappily for us, it was very serious and life threatening, he was in intensive care for 5 days and has been on a selection of anti seizure drugs ever since. I have often wondered what lesson God was trying to teach us about this. Recently I found my answer.
Living with a child who is so utterly innocent and so vulnerable means that we are very mindful (as a family) to be very respectful of Imi and his wishes. Every moment with him is something that we try to cherish and we all hold him gently in the palm of our hands and hearts because we are very lucky for every moment we have with him. Our wake up call happens every time he has a seizure and because of him we have learnt to appreciate and value the goodness that he has instilled in our hearts.
To sum Imi up would be: impossible, each new day brings a new gift, a new reason to smile, new hope that the future will have as many possibilities for him as it does for his two brothers.
Please look further than the inappropriate behaviours that our children sometimes display. Surely it is our differences which make us interesting and worth knowing.
By Sev Mawany
In the mid-1980s, I conducted a study on food sensitivities and their effects on ADD/ADHD symptoms. After testing the patient for delayed food sensitivities, the study consisted of two phases:
The Avoidance Phase, in which the offending foods are avoided for six weeks.
The Challenge Phase, in which the excluded foods are slowly added back into the diet. The reason for the challenge phase is to prove that the foods identified by the test are actually causing specific symptoms.
Included in this particular study, was an autistic child around 2 years old. During the avoidance phase when the harmful foods were removed from this child’s diet, ALL of the Autistic symptoms disappeared. With such dramatic results, the parents withdrew the child from the study before the challenge phase. They not only feared that challenging the foods back into the child’s diet would cause the symptoms to return, but that they would not be able to reverse them again.
This was the first Autistic child I had ever encountered. I consulted my dad who had been a General Practitioner for 50 years, and he had never seen a single case.
As an Otolaryngologist, I didn’t see many cases of Autism. However, just before I moved from Pittsburgh to Florida, I saw the son of a nurse at the hospital who had just been diagnosed with Autism. After I tested him for delayed food sensitivities, I instructed his mother to have him avoid the harmful foods. 16 years later he and his mother stopped by my office. He had continued the protocol and was preparing for college. As far as I could tell he was normal. The only unusual remnant of his autism was that he couldn’t lie.
In Florida, I started seeing more and more patients on the Autistic Spectrum. I have been watching results in my own practice and getting feedback from DAN doctors and others who regularly treat Autism. What I have found is that, in delayed food sensitivity, immune complex plays a vital role in the progression of Autism. And the younger the child we treat, the better the results.
Certainly there are genetic predispositions that affect the population, but since it was rare before the 1980s, there is obviously something else which is drastically contributing to if not causing the huge increase in cases.
Allergic load and an over-stimulated immune system seem to me to be major culprits. Allergic load is the amount of allergens the body can successfully tolerate. When we’re exposed to more than we can handle, the immune system reacts badly. In the case of autism, the brain is affected during its development.
By decreasing the allergic load, the immune system is better able to handle any other onslaughts it may encounter. Since food is such a large portion of the potential allergic load, it makes sense to test children early for both immediate and delayed food sensitivities and eliminate the foods to which they react. This increases the chance that the brain can develop normally.
By Daniel Dantini, MD
My three year old son, Tafari, has come a long way since he was diagnosed with Autism in early 2009. Though I do give myself credit for his development and progress, I give even more credit to the similar families in the Autism community who have helped us along the way. I believe that many parents dealing with Autism become so riddled by isolation, which they forget to realize that there are many other families in our situation who are dealing with similar issues and our willing to hear our voices and concerns.
I am always at my computer, and I am always looking for different resources to further my education and help my son. About a year ago, I stumbled upon an online community that had just launched and was starting to build a name in the Autism community. I was intrigued, because it was a social network a bit like Facebook, but it was only for parents and families that have children with Autism. I quickly got involved in the website, and today I have strong relationships with thousands of mothers, fathers, and specialists in the Autism community.
I run several groups at Theautspot.com, including Single Parents and Low Income Families on the Spectrum, and I feel blessed to share my experience with those who can relate to what I am going through. I also get a ton of support from the resources section of the site as well. It allows me to search for all kinds of Autism resources (therapists, schools, advocacy, summer camps, etc.) within my city and any other cities in the United States.
Through theautspot.com, I was even able to find a special needs lawyer that has helped my son get the rights he deserves in IEP meetings. I had been looking for something like www.theautspot.com for a while and I really wanted to share it with everybody. I really believe that we can all come together and make theautspot.com the global Autism online support system.
I was one of the first few members to sign up to Theautspot.com last fall, and since then I have developed a friendship with the site creators, Dele Popoola and Greg Koltsov. Dele has a 19 year old cousin on the Autism spectrum, and he knows very well how difficult it can be to raise a child on the Autism spectrum, especially a single parent like myself. Both Dele and Greg knew that Tafari could benefit from speech therapy, and knew that I wasn’t doing very well financially.
They were generous enough to put together a gala fundraiser and were able to rise over $3,000 dollars to help fund Tafaris speech therapy! I feel so blessed and so fortunate for the work that they have done for me and the Autism community, and I encourage all others in the Autism community to find a home at theautspot.com like I did.
By Jane Tipton
Have You Considered Health Issues?
In the “ideal world” transition planning should be a part of every Individualized Educational Program in every grade level. Parents with students that have special health needs are constantly trying the balance their child’s health needs and educational needs. In the Individualized Educational Program there is a time that transition planning begins, and this adds another process for the parents to understand. Unfortunately, many times the health issues are not addressed as much as they could be to help plan for transition from the traditional school setting to community based activities.
The IDEA regulation makes it clear that the student is the most important member of the team. Many times the student with special needs have not been as involved in their own health care needs due to the parents doing for their child, the school nurse providing the service, or the student not wanting to do their own care for various reasons including not being able to physically perform. Transition occurs many times for a student that has special health needs, but under the IDEA regulation transition planning occurs officially during the Individualized Educational Program at the age of 14.
Transition planning is designed to help the parent and student connect with the adult service system. This plan should be comprehensive so that it allows movement from school to post secondary activities. It is a time for all members of the team to consider skills and accommodations needed for the student to participate in the five areas of transition: job and job training, community participation, recreation and leisure, home living, and post secondary education/training.
A member of the educational team that is usually not utilized to their fullest potential is the school nurse. The school nurse can assess health issues that need to be addressed during the transition planning. The school nurse can meet with the parents and student to discuss the student’s understanding of their disability/chronic illness. They can discuss with the family how the student would manage their disability, including making appointments, arranging transportation to the doctors, ordering medical supplies, and keeping a record of these supplies. The nurse can help the parents understand their insurance coverage and help them identify adult providers for their student’s disability.
The school nurse can help assess if the student would be responsible for taking their meds, and ordering their medication, understanding of risky behaviours including unprotected sex, drinking, smoking and illegal drugs, and the nurse can also assess the student’s understanding of healthy hygiene, nutrition, exercise and preventive health and dental care.
During this time of transition planning, goals can be written to help the student be as independent as possible to care for or self direct their care on a daily basis. Helping your child gain their independence and self advocate for themselves is essential for all students that have special health needs so they can transition smoothly into adulthood.
Submitted by: Barbara Obst, RN, MS. Kennedy Krieger Institute, Co – Coordinator of the Specialized Health Needs Interagency Collaboration Program (A grant with the Maryland State Department of Education, and Kennedy Krieger Institute).
From the time my son was born, I looked forward to the time when he was old enough to go hunting and fishing with me. As a father and an outdoorsman, having a son meant that I would have someone to share those experiences with. In my family, I was the youngest of five boys. My oldest brother was eighteen years older than me and my father was eleven years older than my mother, who was thirty-seven when I was born.
Like a lot of families, my father and mother both worked full time and carried second jobs. Needless to say, my father and I didn’t get to spend as much time together as I would have liked, and when I was seventeen my father unexpectedly died of a heart attack. Fortunately, I was blessed with the best brothers ever; we spent a lot of quality time together even before dad passed away. After dad’s death, my brothers tried to fill the father role for me and honestly, I don’t know what I would have done without them. They all played a vital part in my life.
As I started my own family I had visions of what my relationship would be like with my children. I thought about fishing trips, camping, vacations and all of the normal things that families do. You can imagine my delight when my first child was born and it was a big nine pound baby boy.
The first couple of years were typical baby years except he was what my mother called “colicky”. I just wanted him to hurry up and get old enough to hold a fishing pole. Our second child came along when our son was about two and a half. This child was a beautiful little girl. I thought this would be great, I will have a son to do boy things with and my wife would have a daughter to do girlie things with, what a perfect family.
Almost as soon as we brought our daughter home our son began showing signs of strange behavior. He wouldn’t even look at his new sister. Over the next few months my wife became increasingly concerned with his actions and began looking for an answer. Within a year or so, we had found a place to have him “tested,” and they gave him a label of Pervasive Developmental Disorder. Thankfully, my wife continued searching for information and instructions on how to live with what we now know as Autism.
Even though my son was different than I expected, I treated him normally and took him with me as often as I could. We made many trips to our local lakes to spend time fishing, and I use that term loosely. I would try to fish while he would look for the biggest rock he could pick up to throw in the water. I didn’t catch many fish, but he had a great time “fishing.”
One particular trip on a summer evening, I had given up on catching any fish and most of the good sized rocks that were high and dry when we arrived, were now resting at the bottom of the lake. The setting sun was transforming the western sky in hues of orange, red and yellow. I took a minute to enjoy the beauty that God had created, something that I wanted so desperately to share with my son. I said to him, “Isn’t that sunset beautiful,” to which he replied, “Yeah, it sounds like corn.”
Disheartened, I hung my head, turned and walked to the truck. Like many times before and since, I just wanted a normal response. I threw my gear in the back of the truck and climbed into the cab wondering if I would ever be able to reach him. As I started to back away I took one more look at the lake. Stretching across the calm water lay a long yellow reflection of the sun, looking incredibly like an ear of corn. With a lump in my throat, through watery eyes, I said, “It does sound like corn, doesn’t it.” Since then he has taught me many more lessons on perception.
By James Clark
It is September and I receive a phone call from the school board offering me a position to assist with the integration of a five year old boy into the kindergarten classroom. He is part of the Autistic Spectrum, as he was diagnosed autistic at the young age of 2, and is currently experiencing an emotional and physiological meltdown with this transition. I willingly accept the post and am off to the school.
After meeting with the principal and resource team to become aware of the behavior challenges that were being experienced I was directed to his classroom where I was to enter and observe this little child that I will call Billy. Of course as I entered the classroom all the children seated at their work stations looked in my direction to see this new person entering, that is all, but one tiny blond boy who seemed to be totally fixated on blocks on the table in front of him.
The teacher then announced to the children that time was up and directed the children to be advancing to the next work station. Billy sat quietly as if the teacher had not made any announcement and showed no interest or desire to be participating in any transition. At one point he lowered his head and placed his tiny hands on his ears, a clear indication that the surrounding movements of chairs and classroom activity during this time had become overwhelming.
One of Billy’s classmates touched him and indicated that he had to move to the other table. It was very clear to see that Billy did not like to be touched as his body tensed up. Then as five year old`s do, before anyone could intervene the other child again, loudly instructed Billy to move to the other table with a slight push. Well it didn’t take long to witness the incredible behavior change of this angelic looking child. It was an outburst of emotion with some screams, cries and hands swinging the blocks in all directions from the table.
As I approached (still a complete stranger to him) he lashed out to hit the other child. I was instructed to remove him from the class in fear that other children would become frightened or hurt. Because he was tiny it was not so challenging for me to lift from behind, his hands crossed in front of him and remove him to a quiet nice private little setting not far from the classroom.
I sat Billy down on the nice comfy chair in the quiet room. He was very tense, throwing his head back (which is why he was in a comfortable cushioned seat). I started to softly hum a song and gently message his fingers one at a time slowly, it didn’t take long for me to feel the tightness fade. I gazed upon this beautiful child’s face and I thought about how sensitive I am to chewing sounds and tried to imagine what it would be like to live in his world, a world where most sounds, touches, tastes, smells not only sparked a great sensitivity but festered an anger due to being incapable of voicing his feelings and having people truly understand them. Of how the slightest transition, difference in a daily routine, seeing a new face can cause so much distress.
Yes, and here he was, five years old not just walking into a new big building, surrounded by so many never seen before big people, many excited running, laughing, screaming children and moms and dads leaving. There was just too much stimulation for this young mind, this beautiful child to deal with.
I was very fortunate to be part of a truly dedicated and caring team. We found out all of his likes and yes, there were many challenging days, which eventually got fewer and fewer. Billy in no time, would walk down the halls and say hi to people. He would participate in so many activities all in his ways, but he fully co-operated and became a positive ray of sunshine. He went from not talking to non stop talking.
Together as a team, with any new event, we would ensure that he was made aware in advance and well prepared him for them…. he taught us all so much about life, challenges, and to stop for a moment and enjoy the peace of our own world too.
I believe that these very gifted children, just need us all to watch them, get to know them and their world, understand, love them, make them feel secure and then the sky is the limit to their success.
It was and still is my pleasure that these children allow me to be a part of their very special lives.
By Mary M. Rowan
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