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Spectrum Snoopy

August 11, 2011 2 comments

This is a blog post by Nicole Thompson, mother of 2 wonderful young boys.  Nicole is a full-time legal secretary of 20 years, an active volunteer for Autism Delaware, and writer of articles regarding autism and the details of her youngest son’s recovery from autsim for Examiner.com.

From the precious moment he was born, Grant was my “Snoopy”. I am very fortunate that he is my second child, otherwise I might not have noticed his delays and quirks as soon as I did. When he was an infant, I watched him sleep in his crib and I thought to myself “what is different about you, little one?”

Snoopy had what I thought were medical problems of some kind from the time he was a baby. Specifically, he had chronic diarrhea, and an issue of some kind with his ears, as he would constantly cover them tightly with his hands. We made many, many trips to the doctor, and the outcome always the same – “there’s no sign of an infection, he must have a virus”. Finally, blood work and stool samples were ordered, and I was certain that the problem would be revealed.  However, to my great surprise all test results were normal. Meanwhile, Snoopy seemed developmentally behind the other children his age at daycare. I attributed his delay to all the forth doctor visits and medical focus, so I allowed a small window of “catch-up” time.

At this point, Snoopy was about 18 months old and had not improved in any way. The other children his age at daycare all walked, talked, played, and interacted with one another. Snoopy walked, but he was often off-balance and he liked to continuously spin in circles. He did NOT talk or even make beginning sounds of words like “ma” or “da”. He was distant at daycare and at home, and he particularly liked to sit by himself and play with toys that had spinning parts. Often, it seemed as if the only two things in Snoopy’s world were himself and his spinning toys. At one point, I remember wondering if he might be partially deaf since he did not even respond to his name.

He also acquired strange behaviors like wiggling his fingers directly in front of his eyes, looking at objects and people out of the corners of his eyes, and he intently focused on things like water or sand sifting through his fingers. (I later learned that this behavior is called “stimming”). He even preferred to view some things upside down like his letter/number puzzle pieces and books. Mealtime was particularly stressful and frustrating. He was he was a “picky eater” to the absolute extreme! I also noticed strange reactions with regard to his vision. He was extremely sensitive to light, both indoors and outdoors. Even on a cloudy, overcast day, he squinted his eyes, or buried his head in my shoulder. In addition, he frequently covered his eyes when he was in an unfamiliar social setting, like the grocery store. He developed a resistance to touch too. He did not even like his hand held.

Now Snoopy was about 20 months old, he had fallen even further behind the other children in his class, and his “medical issues” were even more intense. At that point, I had enough! No more waiting for him to improve, catch-up time was over! My desperate search for answers began.  Why couldn’t anyone tell me what I needed to know – WHAT IS WRONG WITH MY SNOOPY?

Snoopy had so many issues, which at the time, I did not know were all classic signs and symptoms of a child with autism. I did not know anything about autism. I did not know that the world of someone with Autism can be very disturbing, chaotic, and overwhelming. I did not know that someone with autism typically has an overactive sensory system (known as “Sensory Processing Disorder” or “SPD”), which robs them of the natural filter that “typical” people have and take for granted. The sense of sound can be so heightened that they are completely bombarded with all kinds of sounds from every direction – no wonder Snoopy walked around with his hands over his ears! The sense of sight can be so heightened that they see everything and everyone in their surroundings at the same time – no wonder Snoopy covered his eyes! The sense of touch can be so intense that a simple hug or touch of the hand, might be unbearably uncomfortable – no wonder Snoopy did not like his hand held! The sense of taste can be so overexaggerated that anything more than a bland cracker or scrambled egg on the tongue cannot be tolerated – no wonder Snoopy spit everything out of his mouth, or just refused to eat! I did not know that intestinal issues are common in children with autism – no wonder Snoopy had chronic diarrhea! I did not know that children with autism experience developmental delays of all kinds – no wonder Snoopy had no speech, and he was a good year behind his little peers!

Now I needed to get to the bottom of what I had been trying to find out for months – WHAT IS WRONG WITH MY SNOOPY? My precious Snoopy steadily slipped away into some strange world of his own. Without a doubt, come hell or high water, and at any cost – I would save my Snoopy!

Nicole Thompson

http://www.examiner.com/special-needs-kids-in-wilmington/nicole-thompson

Celebrating Moms!

April 25, 2011 61 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

We would like to celebrate mothers this week!

What positive message do you want to send to other Moms who have a child with autism? If you could offer encouragement to other Moms what would you say? What new strength or wisdom did you gain from raising a child with autism?

Be sure to subscribe to the next Community Connections that will, “Celebrate Moms,” to be published on May 6.

In Their Own Words – Mean People

September 2, 2010 304 comments

This “In Their Own Words” is by Jennifer C., whose three-year-old daughter, Sierra, was diagnosed with autism at 20 months. You can read more of her writing at http://fingerprintsofautism.blogspot.com/.

My family went out to eat last night at a restaurant here in town. We usually go to kid-friendly ones that are pretty noisy already. If any of you have an autistic child you know how they cannot control their volume very well. Sierra is very loud and she doesn’t speak that well yet either, but she talks all the time and she squeals a lot when she is having fun. She was happy and being silly, a far cry from a year ago when she didn’t talk and just cried and yelled when we took her out. We try to teach her how to use an inside voice when we are out, but she does it for a minute and goes right back to being loud.

There were two elderly women sitting across the aisle from us who were just horrified by Sierra; they held their ears and shot glances at us, like my child was throwing knives at them. I do usually apologize for her being loud and I did to the other tables closer to us, but they were being nice about it. It wasn’t a constant loudness; she was being very good – eating her food and just being silly because other people were playing with her and her baby sister. When we were done, my husband got up to pay the bill and that’s when one of the elderly women said to me, “Can you keep your kid quiet or does she have to screech like that?”

I almost choked on my french fry. I have never had someone be so mean about it. If she had actually took a minute to look at Sierra, she would have noticed that she doesn’t talk clearly in any way and that she uses sign language while she is “screeching,” as she put it. That might have been a clue that maybe my child makes noise like that because she does not know how to communicate properly yet! I just said in a very loud and mad tone, “She is autistic and she does not understand how to be quiet!” Then she just gave me a blank look and said, “Okay”.  I know she was a coward because she waited until my husband left the table to say it. I hope she was embarrassed. There was so much more I wanted to say but I just couldn’t get it out. I get so upset, then I start to cry and I didn’t want them to see me cry.

I think people are very judgmental about autistic children. They don’t look close enough to see that there might be something wrong with the child; all they see is an unruly child. If they walked in our shoes for one day, they would never be judgmental about another child and their family again. The next time you see a child crying by the gumball machines, it might not be that she is having a temper tantrum for candy; it could be my daughter crying because they changed what is in the machines. At the restaurant, she is crying because the chicken is stringy and she can’t eat stuff with strings hanging off. At the park, it’s because the other kids scare her. At the grocery store, it’s because we walked a different way through the store. Sierra very rarely cries because she can’t have a toy; she cries when her routine changes or when she has trouble communicating her needs, and she gets unruly when she is scared and or on uncommon ground. Imagine having to live life like that and you will think twice about being judgmental.

I love my daughter so much and I wish other people could see her through my eyes, how wonderful, loving, and smart she is, and how frustrated she gets trying to adapt in this world. It breaks my heart every day knowing that she will have to put up with mean people who don’t understand her and what autism is.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Be Still

July 29, 2010 27 comments

Photo by Susan Frank Lowe

This “In Their Own Words” is written by Cheairs Frank Graves, a Charlottesville, Va. mother of two. Her son has autism.

“Be still and know that I am with you.”

These are words that I have heard in church and at Vespers during my days at summer camp, but it is my son with autism who is teaching me the meaning of these nine words.

“With you” is not exactly how I would describe my ongoing relationship with my son. There are days when he is present, laughing and smiling, and there are days when rolling on the floor and dropping marbles in front of his eyes are his activities of choice.  Words cannot describe the sadness I have felt when my son turns his back to me when I try to play with him or when he does not respond to his name. It is an empty feeling – a feeling of failure – and feelings of why.

But along this journey my son is teaching me. If I listen hard enough, he is screaming, “Enter my world!” when he turns his back to me.  If I sit next to him while he drops the marbles in front of his eyes, he might just look at me and smile.

“Be still and know that I am with you.”

If I lie on the carpet when he is rolling on the floor, he moves next to me.

“Be still and know that I am with you.”

If I sit next to him in the front yard, listening and repeating words back to  him – words that he is saying, then I can see his beautiful, blue eyes light up and his crooked smile appear.

“Be still and know that I am with you.”

If I am very still as he comes down the stairs in the morning, I can begin to smile at his ritual of closing off the bedroom and bathroom doors that lead into our room.

“Be still and know that I am with you.”

If I am present when he crawls into the bed and folds himself into the warm comforter, I can celebrate the little life that is lying next to me.

“Be still and know that I am with you.”

If I wrap my arms around him as he puts his head on my chest, I can hear him breathe. My sweet little boy.  My precious little boy.

Mommy, “Be still and know that I am with you.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words –That Shiver of Recognition

July 16, 2010 23 comments

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011.

First, I note the impatience in the father’s voice as he cautions his son to slow the grocery cart down in the dog food aisle. The maybe seven-year-old looks just like his dad in a tee-shirt and shorts, but he moves with an awkward, unfocused gait.

“Nolan!” the dad shouts. “Stop right there and look at me. Look at dad. Nolan!” Too late – bang! Staring down at his flip-flops, Nolan has bumped his empty cart into mine. No damage done, but I pick up on the faraway look in the child’s eyes and the sound of fatigue in his dad’s pleading, “Nolan! Look at dad, Nolan!”

“No worries,” I say to the father, winking at Nolan and giving them both a big, goofy smile. Nolan doesn’t smile back at me, but I can see he’s paying attention now, and as I push on down the aisle I feel a shiver of recognition. I know that look on Nolan’s face and I get the helplessness in the father’s voice.

I remember other trips to the grocery store that went awry. I remember the condescending looks from others, when I would repeat myself endlessly to get my own child to move away from wherever he had gotten himself stuck. I want to tell Nolan’s dad that it’s okay for his kid to tap the cart into mine, because I could see his boy had been enjoying hearing his flip-flops slide across the cool, clean floor. I want to tell Nolan’s dad that he’s doing a good job today, taking his son on an errand, just the two of them; maybe giving mom a rare break.

But I say nothing. Even though my autism radar has kicked in full force, it would have been presumptious of me to make a quick diagnosis of Nolan’s abilities. I don’t dare tell Nolan’s dad that, “I’ve got a grown-up Nolan at home and believe me, you’re doing a good job, dad.” Instead I bite my tongue and zip around the corner to the lightbulb display.

Still, I wanted badly to pat Dear Old Dad on the back, offer a little solidarity on the autism battlefront, and let him know his hard work will pay off down the road. But I do not cross that privacy line.

And this is how autism works to isolate us further as parents. With the spectrum being so broad, it often manifests itself as a hidden disability which creates its own sort of secret society for the families who are in it for life. The bright side is the hidden gift of an ever-growing organization like Autism Speaks, a place where the right to being a different sort of human is recognized, valued, and honored.

Meanwhile back in the lightbulb section, I find the familiar in an unexpected place once again. Here comes Nolan, bearing down on me with his grocery cart a second time, only this time he’s staring at me with a big smile on his face. His dad follows close behind him with his palms turned up. Then he recognizes me and laughs.

“Look out, dad,” I let myself say, “the fun is just beginning.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – The Gift That Keeps on Giving

One never knows when one is going to be bestowed with a special gift. Though I didn’t know it at the time, on May 30, 1969, one such gift was given to me. We brought our beautiful baby boy, with his golden hair and sapphire eyes, home from the hospital three days later. He was definitely a gem, but we had no idea just how special this baby was, or how our lives would change because of him.

Since I was nervous about being left alone with the baby, my husband had arranged to take a week off from work so he could help me. Funny thing, though. He never heard the baby cry during the night, and we only had a three-room apartment. My husband would give the baby his 10:00 p.m. feeding so I could go to bed early. I was then on duty at 2, 6, and 10 a.m. Finally, Daddy would meander out of bed at about 11:00 a.m.

“I appreciate your feeding the baby at ten o’clock at night,” I told my husband, “but I need more help. Why did you take this week off, anyway?”

His reply: “I just had a baby. I’m tired.”

“Guess what?” I answered. “I’m tired, too! Tomorrow night you’re on duty!”

Well, two o’clock rolled around and my husband rolled over in bed so I gave the baby his bottle. However, I would not take “no” for an answer at 6 a.m.

My husband stumbled out of bed and wheeled the bassinet into the living room. Ten minutes later, the baby was still crying so I got out of bed to see what the problem was.  There was my husband, sitting at the dinette table, eating a bowl of cereal.

“What are you doing?” I gasped. “I thought you were going to help me! Why aren’t you feeding the baby?”

His answer: “He has to learn patience.”

I didn’t know whether to laugh or cry. I think I did both. Then we had a little talk. By the time our second son came along, dad was somewhat more attentive.

When we brought Ronnie for his one month check-up, the doctor noticed that his head tilted to one side and he could not turn it to the right, so he sent us to an orthopedist. The orthopedist said that Ronnie had a tight muscle in his neck. I would have to exercise his neck until the muscle loosened up and he could turn his head to the right and hold it up straight. Otherwise, he would need surgery. I can’t imagine the torture my baby must have felt. Every time I had to turn his head and hold it in that position, I think I cried more than he did. For the next 12 months, I did this exercise with my precious baby seven times a day, for five minutes each time. By the time Ronnie was 13 months old, the orthopedist told me I had done such a wonderful job with the exercises that surgery would not be necessary. Years later I would wonder if these heart rending exercises could cause a child to retreat into his own world.

Out of the first 13 months of Ronnie’s life, only the first month was one of total joy. From 13 months to age two-and-a-half, we had another 17 months of joy as our baby learned to walk, talk and do the things babies do. He was, truly, one of the most beautiful babies I had ever seen. His eyes became bluer and his hair looked like spun gold; a halo around my little angel’s head. He had a decent vocabulary but did not seem to be able to converse like other children his age. He was able to count from one to 10; he knew the alphabet, and some colors, and some shapes, but he did not interact with other children.  He remained a solitary figure, engrossed in his own private world. The gnawing in my stomach would not subside. I remembered the feeling I had had the day Ronnie was born. I was so overcome with joy with my new little miracle, I was afraid it would turn out to be only a dream, and my precious baby boy would be taken away from me. He was too good to be true, and we all know what is said about things that seem too good to be true.

By age three, things had not improved very much. Ronnie was able to count to 20, knew a few more shapes and colors, and was finally able to pedal a tricycle. Prior to this, he would not sit on a riding toy, as he had a problem with depth perception, and could not propel himself with his feet.  He still was not interacting with other children, and when spoken to or asked a question, Ronnie would repeat what was said to him rather than engage in conversation. The term for this is echolalia, I would soon learn. He also began spinning objects and flapping his hands, all behaviors that are typical of autism.

By now I was expecting again and was very concerned about Ronnie and my unborn child. We took Ronnie to a child psychologist who assured us Ronnie did not have autism and diagnosed him with Minimal Brain Dysfunction, or MBD, today known as ADD or ADHD. I didn’t know it at the time, but this was my first helping of what I call “alphabet soup.”

I joined the LDA, or Learning Disabilities Association, and went to their monthly meetings. While I was getting ready to attend one meeting, Ronnie, age four at the time, asked if he could come with me. When I told him the meeting was just for mommies, he answered, “No, not just mommies, people, too!”

To this day, no one has ever been able to put me in my place so effectively. 

He was so smart and we were so confused. The puzzle pieces did not fit. As each parent at the meeting described his or her child’s learning problems I became more and more uncomfortable. They were not describing my child. Their children did not have all the “isms.” “Isms” refers to behaviorisms typically associated with autism such as isolation, spinning objects, flapping hands, echolalia, rocking back and forth, and head banging (which, fortunately, Ronnie did not do). In our heart of hearts we knew what the problem was. We took Ronnie to another child psychologist who confirmed our worst suspicions and diagnosed our little boy with autism. 

We were totally at a loss as to where to proceed from there. There was no early intervention back then and the behaviors continued to escalate. I cried myself to sleep most nights and was worried that my second child would also be possessed by the same demon that had stolen my first-born child from me. I had a flashback to the day Ronnie was born, when I thought someone was going to take him away from me. Chills ran down my spine. Did I have some sort of premonition?

We enrolled Ronnie in a private nursery school and kindergarten where he did very well. He then went to a private, special education school where he remained until his graduation at the age of 21.  He is now employed at a workshop for people with special needs. He feels he is a productive member of society and is very proud of his accomplishments.

Fast forward to May 9, 2004. It’s Mother’s Day. I have been a mother for 35 years and have come to appreciate and delight in the special gift God gave me all those years ago. The special soul that was entrusted to my care is the sweetest, gentlest, most caring human being to walk the face of the earth.

Whenever I wasn’t feeling well, which, unfortunately, was a little too often due to my chronic sinusitis and migraines, it was my special son who brought me an ice pack to put on my head. When we were walking down the street and we saw an elderly lady fall, it was he who ran over and tried to pick her up. He was five years old at the time. When I broke my toe, it was he who wrapped blankets around me when I started shivering. He was 10. 

And when my best friend passed away, it was he who tried to console me. It wasn’t until the following morning, when I saw how red and swollen his eyes were, that I found out he had been up all night, crying.

 “Why didn’t you come to us?” I asked him. “You don’t have to cry alone.”

 “You were already upset,” Ronnie said. “I didn’t want to make you more upset.”

 Back to Mother’s Day. My husband gave me flowers, which he normally does. My younger son, Kevin, gave me a book on diet and exercise, which I desperately need. He knew that if my husband had given it to me, he would have been in serious trouble.  I don’t know whether or not it was a conspiracy but as Kevin said to me, “I know you want to eat healthy and lose weight and I know you would never put your son in the ‘dog house.” True enough!

And Ronnie? What did he give me? What he always gives me. A tear in each eye, a smile on my face and bittersweet joy, this time on a piece of paper that read,

Dear Mom,

I’m sorry that I couldn’t think of anything better to give you for mother’s day. That’s because I’m out of money. Happy Mother’s Day anyway. I love you.

Love,

Ronnie

It took many years to turn my world somewhat right side up again. And the years have taken their toll. I am definitely not the same person I would have been had I not been entrusted with this special person to nurture. Each day still brings new challenges and with it, more opportunities to grow. I have met many wonderful people that I otherwise, would not have been privileged to meet and I have experienced many miracles that otherwise would have gone unnoticed.

I am very quick to say that if I had the power to change things, I would certainly have chosen a different path for my son and myself. But, knowing now what I didn’t know when my world was first turned upside-down, can I really be sure?

This “In Their Own Words” essay is written by Judy Gruenfeld of  N.J.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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