Stories From the Heart: “Lila, Mom’s a Witch!”

God blessed me with two wonderful and witty children with Autism. Having worked with Special Needs children for 12 out of my 18 years of teaching, I have always believed that these children should be held to high standards and that we should never treat them any “special.” In my home there is no such word as “handicapped” or “modifications.”

My two children are expected to give 110% all the time in everything they do. Well, one day, I was getting after my daughter, she was 8 years old at the time because she had had a melt-down in the classroom and did not want to do her work. Of course, she became upset at me for getting after her and she called me a “monster.” My oldest son, was 10 at the time and very seriously he tells her, “Lila, Mommy is not a monster!” I was thinking to myself, oh how sweet, Jose is standing up for me. Then he finishes his thought, “Lila, Mommy is a witch!”

So, with friends like them, who needs enemies! I was blown away laughing inside of me, because at least I knew that my children were expressing their thoughts and feelings, even if that meant I was a witch!

By Dalia Rangel

* 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: Ebony, Our Little Boss

Our family has been blessed with a very special gift!  Our son, our grandson, our brother, Ebony (the Boss) is four years old.   He has brown curly hair, big brown eyes and the most adorable smile that could melt your heart.  He loves letters, numbers, music and his family, especially when they are all outdoors.  Looking at Ebony you would never know that he has a disorder called Autism.

Autism affects every aspect of Ebony’s life, and the lives of everyone around him.  Ebony has come a very long way since his diagnosis in 2007.   Since then, he has learned to say a few words, loves to work his computer, his big brothers’ and sister’s iPod touch, has a fascination with words and numbers, is attending regular senior kindergarten this September and loves to be with his family and their dogs.  At home, if you hear a door open to the back yard, the odds are so very high that it’s Ebony heading outside to jump on the trampoline and play with his swing set.

But for all of his intelligence, Ebony still cannot interact appropriately with others.  He has trouble processing the world around him.  He has many sensory issues that prevent him enjoying the things that we all take for granted.  There are three older children, two very athletic boys who play football and baseball ages 17 and 14 and a daughter who is a very talented gymnast and dancer and is 12 years old.  While this is a terribly exciting time for us all as we see Ebony progress, it’s also a frustrating time.

We have learned that Autism is a complex brain disorder that often inhibits a person’s ability to communicate, respond to their surroundings or form relationships with others. Autism spectrum disorders affect people of all racial, ethnic and socioeconomic backgrounds and occur in as many as one in 110 births, one in 70 boys, making it more common than paediatric cancer, diabetes, and AIDS combined.  And the numbers are still rising!

Currently the cause of Autism is unknown. There are no one specific medical treatments or a cure for Autism.   Ebony’s parents are doing everything possible to offer the most normal and functioning life and they work with a fantastic support system ensuring our little boss has a happy life.  Ebony’s older sister is not afraid of what others think and she openly will explain to anyone, that her brother is not a brat but “an angel with Autism”.

This year, as a family, we made the decision to make every effort to increase Autism Awareness. For the first time, and certainly not the last, we walked in the Toronto, Walk Now for Autism as a family team and we put every effort into our fundraising. We held bake and candy sales, charity events, canvassing our neighbours and friends and the children did a remarkable job of getting others to join in.

From the moment we decided to participate, every step of the preparation and fund raising was such a special project for me and as a grandmother; it gave me a feeling of being able to help in a small way.  I threw myself into contacting friends and co-workers making everyone aware of our goal and at every opportunity, I explained to people why this walk was so important.

Ebony is our special gift from God and he is teaching us all so very much!  We know that there is more in that little brown head than meets the eye. His smile lights up a room, his giggles are infectious.  Ebony is the most amazing little man we’ve ever known, and we rejoice in having each day with him.

By Maggie Irvine-Bowles

* 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: My special needs ASD Child

When I got pregnant at age 39 I knew there was a greater risk of having a child with a disability. I had a background in special education so I knew that if that should happen I would be okay and that I would deal with whatever I was faced with. My late husband did not have any experience with special needs children so it was important that we discussed the possibility we faced in regards to the elevated risk in getting pregnant at my age. He also did not have any issues with the possibility and was bound and determined to face any problems head on.

On February 13th at around 12:35 PM our beautiful baby boy was born. My sister who was in the room for the delivery described him as the “Gerber baby“ and my dream to be a mother was finally realized. Braydon grew quickly and appeared to be developing at an average rate. He sat up when he was supposed to, he stood, crawled and walked when he was supposed to and babbled as most babies do until he was 18 months old. The city sends out a pamphlet to new parents with a checklist of words a child should know at a year and a half. As I went down the checklist to see what words Braydon knew I realized after the first few words that he was nowhere near average standards for speech production for a child of his age. This to me was cause for concern.

The pamphlet included a number of a company for parent’s to call if their child was not meeting the average benchmark for speech production. This company specializes in kids who appear to be speech delayed and assist the parent in giving them tips to help the child’s development. Part of this program was a playgroup for children 2 to 4 who were behind in their speech development. The idea behind the playgroup was for kids to learn how to socialize and acquire new language through play. The speech pathologist from our local children’s hospital assigned to our son who went to those playgroup sessions, noticed that he did not socialize with the other kids and had his own agenda as to what he wanted to do at the playgroup. He appeared to exhibit an attention deficit problem as well.

By the time he was 2 years and 8 months old an appointment was set up at a program that provides assistance for children with developmental and physical challenges to have him assessed by a psychologist to find out what was going on. As we had no one to sit for our son my late husband stayed home to look after him and my sister who was a Special Education Consultant for a local school board went with me to the assessment. It lasted approximately 2 hours and after the time was up we were told we would get a call for the assessment results in a few days. Keep in mind that at the time of the assessment our son was practically non-verbal. He spoke maybe a handful of words at the most and never spoke more than two or three word utterances.

My sister did not expect a cut and dried diagnosis because of Braydon’s age and his lack of speech or language at the time of the assessment and the fact that the assessment wasn’t even completed on the day of the assessment.  The diagnosis was GDD or Global developmental delay and PDD NOS with an oral motor speech disorder.  He also had some fine motor challenges. We agreed with the PDD NOS because of his lack of social awareness and the oral motor speech disorder because that was obvious but we had great issue with the GDD diagnosis.  How could she possibly give us a firm diagnosis when she didn’t even finish the assessment? And how could she possibly know what he could do when he hardly spoke a word?

My momma bear took over when she basically told us that our son would never learn past a certain point and that he would not amount to  much in life considering the” severity” of his developmental delay. We all knew that the GDD diagnosis was not accurate and I was determined to prove her wrong. She felt that because he did not know how to complete a simple puzzle he was terribly delayed. I never taught him how because his speech development was a priority for me, puzzle making was not. I went out and bought puzzles to tech him the alphabet and his shapes and simple wooden puzzles so he would learn how to complete those. He learned his alphabet and all his shapes including octagon in about a month or less. That proved to me that the so called “professional” was way off in her GDD diagnosis and that there was a lot more going on with Braydon than he was able to express.

When he entered Kindergarten at age 5,  I made sure he had an assistant to help him because he would not have survived in that large class without one. By the end of Sr. Kindergarten it was obvious that he would have to repeat kindergarten at age 6 because there was no special needs class who would accept him without a proper and up to date diagnosis. The school pushed us to have another one and in the summer when he was 6 we tried again and the diagnosis was not forthcoming because the assessment was not completed. This time we hired a private psychologist and she could see that he had more going on than he was able to express and felt it was unfair to give him an incorrect diagnosis.

After one more horrendous year in kindergarten at age 6 -7 the school who was convinced by this time that he was Autistic pushed us to have another assessment done so he would get a placement in a coveted Autism class in our school board. In March of 2009 he was diagnosed with Autism disorder. It is considered a mild form of Autism on the spectrum and he has symptoms unique to him which is why it took so long to get the Autism disorder diagnosis. We say he has his own spectrum because although he does meet some of the criteria for Autism he has other behaviours that belong only to him.

He is a joy to anyone who knows him. He does not have any aggressive behaviour, he doesn’t have angry outbursts and he aims to please when he’s not being stubborn that is. For my late husband and me the fact that we had a special needs child was not cause for dismay but a privilege to have been trusted to be the parent’s of our special boy. Yes he is different, yes he marches to the tune of his own drum but he is healthy and happy and that is all a parent hopes for in their children.

By Pamela Thompson

* 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 Victory Over Autism – A Poem of Hope and Recovery

The burden lies with me alone.
Though it is something, I should have known,
My dearest friends cannot conceive,
The deep sorrow that time will not relieve.
Must I explain my every thought?
Why at times I have strength naught?

To say it is a torture would be a lie,
The work involved is worth the try.
To reach the inmost of the mind,
Is the treasure I know I’ll find.
I love what others see as a curse.
Belief runs deep, when known it could be worse.

To see a smile, feel love, hear speech,
It makes it worth the effort to reach.
I say I am alone, but ‘tis not true.
My determination and faith will carry me through.
I may break down; my strength seems to fail,
But hope is there, I will prevail.

I pray to the One on bended knee,
Will help others to one-day see
A child that is already whole,
The beauty deep within her soul.
This day will come with reality,
Until it arrives, patience has to be.

At times alone, yea, I will feel,
But I will continue to work with zeal.
Each goal that is reached gives me hope anew,
My faith in her will always be true.
I shall not give up, I will always be bold
And love my girl with her heart of gold.

By Christina Briggs

* 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: Counting Our Blessings

Many years ago, my husband and I were like many other couples, married later in life, both working, we wanted to have a family, and were not able to conceive. After years of treatments, we finally made the decision to adopt. After many twists & turns, we were surprised by a call regarding a little 8 month old boy, who was being cared for by his Grandparents until a family could be found. Would we be interested in meeting him? “Of course!” we said, and our lives were totally changed from that one call.

It was the first time that my husband had ever held a baby; he just stared at him in awe. Afterward he confided to me that if we didn’t get this little guy, he would be devastated.  A couple of weeks later we were taking him home, he would be ours, and we named him Harrison. We were THRILLED. Little did we know then, that this special little gift held more surprises for us just around the corner.

His paediatrician said that he was healthy, in the 25% range, but that he had not reached some of the typical milestones. He said it might just be developmental delays due to his early care. Good care, love and nutrition could do wonders for a child. Up until then, he had been bounced around a bit within his family. He had also been born w/ some drugs in his system. The doctor felt that we should wait a little longer before having him tested for possible problems. He didn’t want him “labelled” prematurely.

At 3-1/2 Harrison was diagnosed with Autism, and we were turned inside out trying to learn all we could about this puzzling disability, and what we could do to improve our son’s chances. Back then Autism was not in the public eye, like it is now, the internet was the source for information. We didn’t even know anyone who was Autistic. I had to learn “the code” and how to navigate through things like ESE, med waiver, OT, PT, ST, ABA therapies, elopement, meltdowns, 504’s & IEP’s, and lack of sleep. We soon had alarms on every window and door, so we would know if Harrison had snuck outside to look at something, only he had the impulse to see.

Now Harrison is 13. We have since adopted a second special needs child, “Hannah” from China. In the last 2-1/2 years since we brought her home, Harrison has reached many more milestones, many we think have been achieved with the help & encouragement of a little sister. He continues to excel in “baby steps”, and we couldn’t be more proud of him. Our lives are never dull, full of challenges, but we couldn’t imagine living it without this little man’s part in it.

Autism is a blessing in many ways. He has taught us patience, perseverance, joy, frustration, focus, but most of all love. He doesn’t pay attention to what other people think or say about him, he is his own person. He finds joy in the simplest of things, most of us tend to overlook.

He never forgets anything. He doesn’t “get lost”, it’s us who do. He is loyal to a fault: Thomas the Tank is still as important to him now, as it was when he was 3, whether anyone else thinks it’s cool or not. He’s constant & consistent: chocolate chip cookies must be warm from the oven, and served daily.  The smell of them warms my heart, and will always make me think of him, and count our blessings.

By S. Andersen-Moore

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

Contact Info

Toll Free: 1-866-9AUTISM (928-8476)

New York Office: 244 5th Avenue New York, NY 10001 Fax: 1-780-416-4330,

Canadian Office: 11007 Jaspar Ave Edmonton, Alberta T5K 0K6

Copyright 2017 © All Rights Reserved

1 in
45

Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk