Stories From the Heart: Finding the Common Ground

Like many people, I have an Autistic child.  He’s not the highest functioning but he’s come a very long way over the years.  One of my greatest fears as a mother is not that my son will not recover.  I know that our children will.  My fear is that he recovers but because we were so focused only on recovery that we forgot to let him be a person and experience life.

When I look at my child, I see all the things that we still need to accomplish.  I know that by working through therapies and extra schooling those things will come about.  But what happens when he recovers and had no experiences that were common to his peers?  He still won’t fit in because he won’t have any common grounds of experience.

For me, this has been a big issue.  To make sure that my son experiences some things like all the other boys.  That’s really tough when your child isn’t always able to sit still or really relate to other people.  So we initially chose swimming lessons that were just him with his teacher.  As he began to swim better and better, he also made a connection with his teacher.

Then there was Boy Scouts.  Our area had a special needs troop.  That was great.  Not all the children had special needs but most did and the other boys in the troop understood because we were in the special troop.  This also meant that we weren’t as boy lead as a traditional group and that we worked on patches during meetings and those lessons were tailored to short attention spans and taught in small increments.  We camped and fished; we even competed at Camporee’s with the non-special troops, and still took home ribbons for placing in the top 3 in some events.

We really didn’t have a sport for our son.  A large group of children running around was just too overwhelming for my son.  So sports like soccer, football and basketball were definitely not a possibility for him.   Other sports were just too solitary and he’d lose his focus.  But we did find our place in a very unlikely venue.

After the 2006 Winter Olympics I talked my family and a friend into trying curling. (Yes, the sport with rocks, ice and brooms.)  We took a few classes  and we played some beginner games.  My son loved it.  It has personal aspects, you’re still part of a team, but it’s not too quick. (That’s why there are no slow motion cameras in televising curling.)

We found a connection with the other curlers who are very supportive and kind.  Unfortunately, playing times changed and we couldn’t play at that venue any more, the 5 hours round trip was just too much on a week night.  So we waited to get closer ice.

After the 2010 Winter Olympics, our city opened a new ice arena.  This gave us 3 more rinks in town.  We found other curlers and want-to-be-curlers and started a club after 2 months of intensive work to get equipment, money and ice time.  Fort Wayne now has a curling club that welcomes anyone.  We have another special needs curler in our club and a wheelchair athlete.  We curl every week on our league night.  Everyone is integrated onto teams.

My son asks to curl almost every day.  He feels safe at the rink and interacts with the club members.  He has very good curling skills and uses a delivery stick because the slide delivery doesn’t work for him yet.  He has really been the inspiration to start the club.  We are working with Special Olympics and the USCA to bring curling to all the special needs people of the United States.

For me the best thing of all is the common ground that my family has experienced through curling.  My family can do something together as a family within our community.  It’s a sport that one can play their whole life.  Curling gives my son an experience that maybe everyone here hasn’t experienced but he knows how to rely on himself and be part of a team.  He may never be an Olympian, but he experiences the joy of a good shot.

By Jerri Mead

* 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: Patience Really Is a Virtue

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.

By Matt McLain

* 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: The Benefits of Using Sign Language with Special Needs Children

Traditionally, sign language is only thought of in the context of either the deaf community, or to use with children who are hearing impaired. However, today, there are multiple populations of hearing children with special needs in which sign language has proven extremely beneficial.

Some of these disabilities include Apraxia, Autism, Cerebral Palsy, speech and language delays, Down Syndrome, sensory issues, learning disabilities, medically fragile children, and varying degrees of cognitive disabilities.  Sign language is also used other developmental disabilities, as well as in children with severe behavioural challenges.

Recent research indicates multiple advantages in using sign language to help children with special needs. The overall development of speech, language, social, emotional, and academic skills can all be enhanced through the use of signing. Sign language appears to accelerate the acquisition of speech by stimulating certain areas of the brain that are associated with speech and language.

Also, signing provides overall language stimulation and conceptual information that enhances vocabulary development in children. Since many children with special needs exhibit difficulty with expressive language, sign language provides these children with access to communication while strengthening their ability to produce speech.

Sign language also increases social and emotional development in children with special needs. Signing helps to expand social opportunities, which in turn naturally enhances overall self-esteem. These children, as they develop better communication skills through signing, often become more independent. In addition, the brain makes connections through both auditory and visual input. Since children with special needs often have other impairments, that affect normal development in the brain, sign language helps these areas of the brain that are linked to the development of speech and language. Also, language is the primary building block for learning and academic development.

One of the most recent developments includes the use of sign language with children with Autism. Autism is a neurological developmental disorder which results in impairment of social skills, language development, and behaviour. Research today indicates that one of the most effective ways to teach speech to children with Autism is through the use of sign language. Signing increased the chances of children with Autism learning to hear spoken language. It provides these children with an alternative mode of communication.

It is relatively easy for parents to learn and to utilize it with their children. Since sign language is more iconic than speech, individual signs can be more easily grasped: Recent research has also discovered that sign language is most likely processed in the right hemisphere of the brain. Since children with Autism have left hemisphere brain impairment, signing may be easier for them to comprehend.

Since language is one of the primary building blocks for learning and academic development, sign language is useful for children with special needs because it stimulates intellectual development. Using signs also helps children to retain information longer because it supplements speech input. Utilizing many different modes of input strengthens the connections in the brain and therefore greatly benefits overall academic development in these children.

By Ellen Lunz

* 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: 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.

Stories From the Heart: Why Can’t I Pass Fourth Grade?

Several years ago, a student whom I will call Frank, came to my classroom, introduced himself and said to me “I just cannot seem to pass fourth grade.”  I told him we would figure it out together. Off we went to fourth grade for a lesson and I sat at the back of the room and watched my new friend participate.

The teacher illustrated something on the board and then turning to the class said “If you get this, raise your hand.” Frank put up his hand with the others. So far so good. The teacher then turned her back to the class and went on to write something new on the board. Frank kept his hand up, long after the others had put theirs down.

Suddenly realizing that he stood out, he looked very worried, put his hand down and began fidgeting in his seat. He also began flapping his hands and rocking. As the teacher droned on, Frank had tuned out and was missing a great deal of the next lesson. All because there was an implied direction rather than a spoken directive such as “hands down”. He pulled himself together admirably, but this took time, and time was not on his side.

Frank and I next went out to recess. Frank looked for a group to participate in and as he found one, he stood there frozen just outside the perimeter of the game.  He was on the outside, staring in at what he wanted to be his part of his world.

We had much work to do. Frank could pass fourth grade with help, but what he could not pass for was a child who blended in. We devised strategies to help.  These included:

1) When in doubt, just do what everyone else is doing. This gives time to blend and attend.

2) Stim modification….when Frank needed to flap/wring his hands, he went to the sink and did so while washing his hands. Frank came up with his own strategies…..I watched him one day start to flap outside and turn it immediately into a pretend swing of a baseball bat.

3) Added visual supports. For whatever he said he did not understand, we made a visual of what was truly going on. We also used index cards as cue cards that he would carry.

4) Role play..we practiced how to enter a group, how to exit a group, what a proper speaking distance was. We would practice it; he would try it out, and then report back as to how it worked. If it didn’t, we modified it until it did.

Frank passed fourth grade that year and got invited to his first birthday party!

Frank has the potential to be anything that he wants to be. Yet he was lost in a system that failed to recognize his unique strengths and challenges. He came to me completely baffled; with no tools or strategies to succeed. No one had ever sought to empower him by teaching him self-advocacy. No one had ever made it OK for him to be the magnificent child that he was and continues to be.

Frank didn’t fail fourth grade. Fourth grade failed Frank.

By Marie Inglee

* 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: ADHD 101 for Parents

ADHD has had different names over the years, being first identified in the early 1900’s.  ADHD is a diagnosable illness, however the cause is still debatable.  ADHD is often not diagnosed until children are in grade two or three. There are four main things that parents can do for children who display ADHD-like characteristics:

1. It is important that parents and child to learn as much as they can about the disorder.  Parents need to become their child’s advocate.  Some of the possible ways of doing this are by reading and parent networking groups.

2. Behaviour modification is also used both at home and at school.  Some parents confuse this technique with bribery.  Behaviour modification is a system of positive rewards for good behaviour (e.g. stickers on a reward chart).  Negative rewards are given for inappropriate behaviour (e.g. time out).

3. ADHD is a medical condition, and as such, has to be diagnosed by a physician.  Parents are encouraged to seek medical assistance for ADHD.

4. Parents need to reach out and connect with other parents who are experiencing similar issues.  Parent support and networking are critical to maintaining a positive attitude when parenting a challenging child.

There can be difficult moments when raising a child with challenging behavioural issues.  Parents need extended families and their communities to be supportive and understanding. Parents need to realize that there are lots of happy moments and that most behavioural incidents are over quickly and that’s the time for hugs and kisses!

By Cheryl Thacker

* 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: Parenting Outside the Box

Everyone gives birth to a perfect child—even a child born on the Autism Spectrum.  I am the parent of a child with Asperger’s Syndrome.  As a result, I parent outside the box of normal.  I anticipate rather than react (or at least I try).  Rather than being spontaneous, I plan and prepare.  I struggle with organization, but with an Aspie (an affectionate term) it is almost impossible to live outside of being organized.

Even though she did not receive a diagnosis until she was 12, I knew that she was “different”, but I had no idea these differences were anything more than a unique personality trait.  I still believe structure is what makes her stand out from everyone else and is a big part of who she is.

She sees the world differently than typical children but seeing the world through her eyes has made it come alive again.  She struggles with change and loves structure.  She likes doing the same thing every day and knowing what to expect ahead of time.  She is obsessed with music and drama—from watching and listening to it to singing and acting herself.  She struggles with school and relationships but nothing is as difficult as just living in a world so different from the one she thinks she lives in.

Not once have I ever sought a cure or prayed for a change.  At times I would like to modify her reactions to negative events. I want to teach her how to deal with the confusing life that’s going on around her. There are especially times when I would like to lecture the people that tease her and do things to make her over-react, but that would only make matters worse.

As a parent living outside the box, I’ve learned not to make excuses for her behaviour or apologize for it.  The stares I get from other people no longer faze me.  I don’t care that they think my child is a spoiled, obnoxious brat or that I’m a lousy parent.

If you are a parent living outside the box, forget about what others think about your children and your parenting skills.  Love your children the way they are and create an atmosphere that allows them to be who they are, not what the world says they should be.  Forget about the world’s definition of perfection and create your own.  Perfection, after all, is a process which we strive for but never attain completely.

We are parents of unique children who deserve to be treated fairly, with respect and compassion.  Typical children are not better, just different.  Once the world realizes the contributions our children can and will make to society, they will envy the gift we were given at the birth of our special children.

By Jill Jones

* 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
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Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk