I believe there must be some truth to the adage “What doesn’t kill you makes you stronger.”I believe many mothers and fathers out there are on the same page as I am when facing autism, a lifelong struggle. Hearing it for the first time felt like I am drowning in a bottomless pit. Was I scared? Confused? Angry? Yes, I was engulfed in so many emotions all at the same time. [ 654 more words. ]
Project Lifesaver, Saving Those With Autism Who Wander, “Those Little Guys Are So Fast”
More than 1 million people in the country live with autism. Many have a difficult time picking up on social cues, understanding others intentions, or thoughts. Experts say these things make those with autism more vulnerable to crime and dangerous situations.
I believe there must be some truth to the adage “What doesn’t kill you makes you stronger.”I believe many mothers and fathers out there are on the same page as I am when facing autism, a lifelong struggle. Hearing it for the first time felt like I am drowning in a bottomless pit. Was I scared? Confused? Angry? Yes, I was engulfed in so many emotions all at the same time. It was scary and heartbreaking to look at a cherubic 2-year old knowing that his whole life will be fraught with challenges and limitations—and knowing that you can only do so much.
Fifteen years ago, I had my youngest son diagnosed with Autism. It rendered me speechless. Having survived my eldest son’s Tourette’s and ADHD, I really thought nothing will ever shake my world again. But after John’s autism diagnosis, I caught myself in the midst of a seismic shift that will forever alter my perspective about motherhood and life in general.
My first instinct was to look up the disorder in the library. But books about autism fifteen years ago are scant, if not limited. Autism is a hush-hush subject and many families who are in the midst of such a turmoil often caught themselves off-guard. Like me, they were also in a quandary on what to do, where to go and how to start anew. Along with the interest of learning about autism is that undeniable feeling of helplessness wherein you felt like screaming “go away!”
Frankly, the easiest recourse was to wallow in sadness. It has no known cure or cause after all. It was as vague as the issue of alien sightings. There is no definite answer but only that this is going to create changes in your family. It will create a lot of pressure and bring out bucketful of tears. It can either break or make your bond stronger.
I was told that my Johnny, my sweet little boy, is going to grow up differently. That he will never live normally. At some point I loathe the word “normal” so much that I felt like pulling my hair each time someone points out that reality. It cannot be helped that there will always be some insensitive people who do not mind their tongues when talking to you. What hurts me the most was that they do not even show remorse when they label your kid—in your face!
But I refused to give in. After the shock of the diagnosis mellowed down, I began my journey as an advocate. I left my career path in the dental industry and become an activist for children with special needs. With the help of some community members undergoing the same journey as I do, we were able to champion the financial aid of $20,000 per year for all children diagnosed with autism in New Brunswick. I became the president of the Autism Society of New Brunswick and then, served as a director of Pee Wee Active Living (formally Junior Special Olympics, a program that kicked off in Hanwell).
I refused to give in further to the depressing thought of a disorder that has no cure and passed, via the Catholic Women’s League of Canada, a resolution that gave rise to the support of individuals with autism from the government. Resolution 04.08 was passed in the national arena on 2004 and had given a lot of assistance to autism families in need.
If there is one thing I have learned about my son’s autism (as well as my Joshua’s ADHD and Tourette’s), it is to have faith and letting that faith guide you to make positive changes not just in your life but in others as well. There is no one in this world who can advocate for a child than his or her own parents. To make things come full circle, however, you need to include others in your advocacy.
Indeed, autism is a road less travelled. The journey is fraught with difficulties, trials and tribulations. But these challenges should not be seen as hindrances. The only kryptonite that curtails your power to move and work around it is your own disposition in life. Have faith. Reach out to others. There is nothing more delightful than trudging an uphill climb with someone to hold your hands.
Few things in the world are more powerful than a positive push. A smile. A world of optimism and hope. A ‘you can do it’ when things are tough. ~~ Helen Keller
There seems to be a lot going on in various autism communities and families around the globe. Some say it is due to reclassification, of late diagnoses, and of rising awareness to the disorder. In my humble opinion, however, the surrounding arguments are immaterial. The fact that there is shortage in autism services is a clear indication that this is growing and, up to this moment, has no known cure and no “absolute” therapy to manage it. Best of all, there is little, if not zero, services for adults on the spectrum.
My Johnny is going to be an adult pretty soon and, can no longer avail the free services allotted for him. He will no longer be on the list of “qualified” individuals but rather will be left in oblivion. He is well-protected because we, his family, are still here. What scares me most and, perhaps, many autism parents out there is what the future might bring. How will these kids fare when left alone in a world where acceptance is a long hurdle to achieve?
I have written before on how to prepare our children for a bleak adult future. I advocate on teaching them appropriate life skills and other needed abilities to ensure their future. But this is not easy hurdle to make especially for those who are in the lower end of the spectrum. This leaves many families in a quandary on what to do should their children will be left alone with no one to care for them—and I join them in this predicament.
Autism is a lifetime disorder. To some, it can be managed. To others, it takes all their strength and sanity just to get by each day. One thing, however, is for sure—it is here to stay and still has no known cure, or even an absolute cause. It is not a disease that one can simply operate upon. It cannot be removed like a tumor. It is what it is and, whether we, autism families, like it or not, it will continue to haunt our every waking moment. But this reality should not hinder our efforts to advocate for more autism awareness. Acceptance may sound like a long shot but, nothing could go wrong if we stay an optimist all throughout the ordeal.
Examining my ability to paint; every stroke is instinctual since I have no training, and I rely on the use of the huge amount of stored information my Aspergers mind has observed and retained. Each painting a now create, regardless of size, is painted in less than 1 hour. When photographed during the process of creating a finished piece of artwork, my hand appears as a blur due to the movement of my hand and quickness of the application of paint to the canvas. This is the genius of a mind with Aspergers. In many ways I feel possessed during the actual act of painting, and I am reluctant to take credit for the finished work resting on the easel when I am done. What I do know is that the exploration of using a palette knife last year released me, and my use of brushes has now become less calculated and exact which allows the results to be much more impressionistic. I can now freely use both a palette knife and a brush while painting to get the desired results. The finished outcome is always a surprise to me.
A label is too small for a human being’s magnificence.
Am I Autistic or Do I Have Autism?
The National Autistic Society (NAS) has recently conducted a study on what to call people on the spectrum. You can read about it here. There seems to be a lot of debate as to whether one should say, “He or she has autism” or “He or she is autistic.” I’m on the autistic spectrum myself, and people have sometimes asked me, “Do you want me to say you’re autistic or do you want me to say that you have autism?”
Wristbands that measure surface skin temperature and heart rate could transform the lives of people with autism by predicting big behavioural shifts
Biometric wristbands that can “see inside” the bodies of people with autism and predict dramatic behaviour changes could be commercially available within two to five years.
Dr Matthew Goodwin, an expert on wearable bio sensors in autistic patients, claims that the ability to measure minute physiological changes such as surface skin temperature and heart rate could transform the lives of people with autism.
Together with his team at Boston’s Northeastern University, Dr Goodwin is working with a lightweight wristband, similar to a watch, which measures four physiological signals – heart rate, surface skin temperature, sweating, and three dimensional movements of the limb that is wearing the sensor.
The team is also exploring ways to stream information from wristbands live to mobile phones, via an app. This would enable a family member or teacher to closely monitor the person they are caring for.
People with severe autism, who are often unable to communicate through words or body language, are apt to dramatic behavioural changes that include self injury, aggression and running away.
Through ten years of research in America, Dr Goodwin and his team have established that body signals may be able to predict these sometimes violent changes before they happen, giving carers the opportunity to take appropriate action.
“The autistic children we’re working with can’t tell us what’s going on. They can’t say they have a headache, or ‘it’s too loud in here’ or ‘I don’t like this teacher’,” he said.
“If we want to understand them, we need to look at what their body is telling us – and we need to do this in a gentle, unobtrusive way.”
Kelsey, who has also been diagnosed with autism, was 11 months old when the two met, and she weighed just 11 pounds.
“When I walked into the room, there were 20 or so babies and toddlers,” Norris remembered. “One of them said, ‘Momma,’ and it was this one.”
From that time, Norris recalled a day when she could visit Kelsey but couldn’t bring her home yet. Always among the smallest of the group, Kelsey — along with other small children — was a target when meal time came around.
Others lost their bread, but Kelsey clinched hers in a fist and covered it with her body, taking a few kicks and pushes from older children but keeping her food.
“I think that tenacity, that will to live, kept her alive long enough until I found her,” Norris said.
In the years since, the two have bonded while Kelsey developed a variety of interests. She does gymnastics, dance and even cheerleading, and her mother has been there every step of the way.
“I always kiss her,” Kelsey said.
Through her gymnastics and dance classes at KidsAmerica in Perry, Kelsey became interested in pageants. In the last year, she’s competed in 40 pageants and won 35 titles, and just two of those were specifically for special needs children.
The others had Kelsey working with and competing against the general population of participants, and that has been a good experience for her, Norris said.
“Since she’s started pageants, eye contact, the ability to walk up to peers she doesn’t know … has improved,” she said.
The gym hopes to eliminate that stigma. Their slogan is, “Finally a place where you never have to say ‘I’m sorry’.” Green said, “It’s just nice to be in a place where he can be himself. Where he can yell, and he can jump and he can climb.”
The gym has 31 locations in 10 different states. CEO, Dina Kimmel whose own son has autism, started it 5 years ago. She says 1 out of 5 kids are affected by a sensory processing disorder and says the gym is needed for those kids to grow.
The gym has swings, a zipline, a trampoline and monkey bars. Visitors will also find a calming room and a therapy room and classes such as yoga and dance. It’s the only program of its kind like in Western New York. Kimmel said, “Those numbers are high and they are not going anywhere. This is a neurological disorder so it’s not like the other indoor play gyms. It is for fun, but it also serves a bigger purpose.”