Stories From the Heart: The Big Cheese

I was quite relieved when I heard that my son had Autistic tendencies, when we had him assessed at 24 months. For a long time I had been feeling that everyone was missing the big picture.  I could see he was not developing as a normal 2 year old should be.

My Danny is now 17 years old and life is much easier. I can’t remember much of those early years. We had another son, Nicholas, when Danny was 18 months and another son, and a daughter, Gabriel, when he was nearly 5.

What I learned from Danny was patience and acceptance, our two other sons, especially Nicholas taught him just about everything else.

Danny is verbal and can talk a lot when he feels like it, as most Autistic children he has his obsessions and they have come and gone; Telletubbies, Thomas the Tank engine, computers. He now knows what is age appropriate and will ask us to leave a room when he is watching something meant for younger children.

He also knows now that it’s not good to take his clothes off at any time, and does not disappear from us at the speed of lightning. Shopping used to be a nightmare  and family holiday involved at least 1 frantic search as Danny would wander into anyone’s house inspect the fridge and make himself at home.

We live on a Game Reserve an hour from the nearest small town.  From a very young age Danny has walked around the reserve, free as a bird. Some days he would leave at 7 am and come back in the dark at around 10 pm. We have various animals including buffalo, white rhinos and elephants, and Danny says hello to them all as he walks past.  They seem to know he is no threat.  I have noticed that after a lot of physical activity Danny is calmer, talks more, and seems happier.

The hardest thing I have ever done has been sending Danny to school.  We are three hours from the nearest city that has a Special school and Danny started boarding there when he was 6. He did not talk for almost a year and cried every week end when we took him back. He still prefers to be at home, and keeps his school life and home life totally separate. He will not wear anything at home that he wears at school, or talk about friends or what he does there unless it’s something that worries him, like when his friend fell down the stairs.

I wanted to give Danny the chance to live away from us and to know that he could cope. For months it felt as if I had lost a limb, as a young child Danny felt like an extension of my body. Our other 2 sons are at boarding school and sending them was much easier.

Danny went through a stage of singing “Jesus Loves Me “ every time we sat down for a meal and making us pray before we ate.  He must have been around 9 or 10 at the time and I realized that this is what they were doing at school.  We have guest houses on the farm and Danny and his brothers came with me to clean one after the guests had left. We were unpacking the fridge and Danny grabbed a block of cheese and said “Cheesus loves you”.

I realized then that a lot of Danny’s life is spent doing stuff he does not fully understand, waiting for people to tell him what to do, and how to react to what’s going on.  I admire, respect him and love him to pieces!

By Kitty Viljoen

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart:Networking

Every parent knows that other parents have the best tips and resources. You quickly learn to rely on your network of like-minded parents for restaurant, playground and parenting tips. But when you learn that your eldest has Autism, that carefully groomed network shatters and you’re left wondering where to turn.

Luckily for my family, Minnesota AuSM (The Autism Society of Minnesota) which offers families living with autism spectrum disorder (ASD) a vibrant network of families and professionals active in the local autism community.

My son was barely two when he was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified), which is on the autism spectrum. We felt lost, isolated and confused. Usually competent and confident people, my husband and I were baffled by conflicting information we received from online searches and uncertain if the school services we were receiving were enough to address our son’s needs.

Through a pamphlet provided by the schools, we learned about AuSM’s Discovery Series, which educates parents of children with a recent diagnosis of ASD on a wide range of topics. This series met over four weeks and provided us with a Resource Directory complete with parents’ recommendations on local services. I still reference that binder three years later, whether I’m looking for a new dentist, photographer, developmental pediatrician, or starting down yet another treatment path.

After the Discovery Series experience, I became active with AuSM and experienced other services they provide. Through workshops and trainings by the nation’s top researchers and practitioners in the field, I know that the private and district staff that work with my son are receiving the best information available. I am confident in the content and quality of the education AuSM provides to professionals and parents in our community.

But membership in AuSM doesn’t stop at education and services. For me, it has provided a way to welcome autism into our life. As we left behind our previous normal life, we felt a loss so great; we grieved constantly. AuSM and its community partners have become our new support system.

Without AuSM’s ready-made network, we would have struggled much more – not knowing all that we needed to know to parent our extraordinary son. Thanks to AuSM, we now have a community that celebrates with us, grieves with us and learns with us. They are true partners in our remarkable journey.

By Shannon Andreson

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Enjoy the Little Things

As a mother of four children on the Autism Spectrum I can’t help but reflect upon what I have learned from them.  My husband and I had many preconceived notions about parenthood before actually having our children.  I thought that because I am a teacher, I would naturally be a wonderful parent.

Fast forward fifteen years, and here is what I have learned.  There is no such thing as the perfect child.  Perfection is just a fallacy that does not really exist.  Everyone has some kind of cross to bear, my husband and I just have the advantage of know what our children routinely struggle within their daily lives just to fit in and get through the day.  After all, what is normal anyway?

I have always lived by the notion that life will always be my greatest teacher.  I didn’t know just how true this was until being given the gift of my four children.  In addition to getting through the challenge of proper diagnosis, I have been on a journey to educate myself about my children’s strengths and needs.

I have learned to be proud of their accomplishments no matter how they may compare to those of their peers or how other people may perceive them.  I have learned to be an advocate and fight for what my children need, whether it be in school, recreationally, or in the community.  Team sports have not really worked out for us.  However, this led us to discover some wonderful places and programs around Western New York that are very Autism friendly.  The Baseball Academy of Western New York, Cradle Beach Camp, Kissing Bridge Adaptive ski program, High Hurdles, and SABAH have all enriched the lives of my children.

I have also learned that in order for my children to be accepted, it requires my husband and I to not only educate those involved about Autism, but to become the Cub Scout den leader, the religion teacher, the PTA mom and whatever else is required for our children to be accepted on some level in all areas of life.
National Autism associations are fantastic for researchers or for informing the public about Autism, but unfortunately, they are not beneficial to the families living with Autism.

There are families, like ours, who have several children afflicted with Autism, who are struggling to finance all of the therapies, doctors, and needs not covered by insurance.  These associations offer no help whatsoever to individual families trying to help their children.  Raising a family with multiple children on the Autism spectrum makes paying for college look easy.

I have learned that other parents of children with Autism are the most understanding and knowledgeable people to talk to.  They are absolutely exhausted from doing whatever it takes to meet the needs of their child, but they are very strong people.  My parents always told me that God gave me these children because I have what it takes to give them happy and fulfilling lives.  I really wouldn’t have it any other way.

My children have taught me more than I could ever teach them.  They have taught me patience, understanding, empathy, and most importantly, how to take life day by day and enjoy the little things that mean so much.  Anthony, Alex, Juliana, and Drew, thank you so much for teaching me what life is really all about.  You are strong, intelligent, compassionate children; and I love you all just the way you are.

By Deana Newberry

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Finding the Joy

“Oh, I’m so sorry” “Poor thing” “It must be really hard for you”

These are just some of the things I hear when someone finds out I am the mother of a child on the Autism Spectrum.

When I first received my sons diagnosis of Autism Spectrum Disorder PDD-NOS it came as no surprise, but it was still a hard pill to swallow. I soon began to realize this would not be an easy road for him or me. I started to think about all the challenges he would face in his life because of the Autism. Worst than that; I began to dwell on them. My days were filled with thoughts of all he would miss out on, the social difficulties he would face, and the many other things that would affect his daily living. I wondered if he would ever make friends, learn his time tables, get a job or even get married.

One day while reading it occurred to me that I was setting my son up for failure…I was selling him short. He was capable of much more than I was giving him credit for. I had been looking only at the negative side of Autism; at only the frustration, anxiety and hopelessness it can sometimes bring. Then one word came to mind….JOY.

Joy is defined as experiencing great pleasure or delight; enjoyment in. Some of may be wondering what delight could I have gotten out of Autism. It’s not necessarily the autism itself, but the experiences I have with a child affected by Autism.

For example, we attend church regularly as a family. I can’t remember the last time I have actually sat through an entire service; my son is unable to sit still long enough or be quite during the appropriate times. So we always seem to be making a quick escape to walk around the hallways or go outside on occasion, weather permitting.

One day during our regular Sunday walk, my son and I sat down on some benches outside the church to rest. After only a few seconds, my son popped up, held out his hand and said, “Mommy let’s dance.” I thought why not. So there we were hand in hand dancing our own version of the waltz; even doing a couple of twirls and dips. My son even bowed at the end of our dance and I curtsied.

Later that day as I thought about what had happened that morning; it dawned on me. Had it not been for my son’s inability to sit still for even a few minutes, or his unexpected verbal outbursts; we would have missed that wonderful moment together, that moment of pleasure, of delight, of JOY.

Since that day I made a decision to look differently at my son’s autism. I began to rearrange my way of thinking; starting with making a list of my son’s strong qualities. He is ambitious, independent, strong-willed, compassionate, and observant; just to name a few.

Next, I decided to keep what I refer to as Joy Journal, in which I record moments in my son’s life; moments of joy, moments that occur because of his Autism.

Yes there are still challenges we face. There are times of setbacks, stress, and even occasional negative thoughts. But now instead of dwelling on those; I pick up the Joy Journal and I read all the times my son and I found the JOY in Autism.

By Rebecca Rivera

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

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1 in
45

Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk