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Posts Tagged ‘special needs’

In Their Own Words – If He Really Knew Me

September 14, 2010 30 comments

This “In Their Own Words” is by JR Inman, who has a teenage son with high-functioning autism.

My son is now 14 years old and is considered now to be high-functioning. As all of you can imagine, he definitely did not start out that way. We have worked very hard on giving him the social skills that he needs to fit into society. He has learned them so well and has such a big heart that he tends to be much more forgiving of others’ bad behavior than most of us.

He was attending a public school in Southern California and he rode a bus specifically for special needs children. However, because of budget cuts, they slowly began to add typical children to his bus in the afternoon. He had complained to me that there were boys on his bus that he did not understand. I asked him what he meant and he said they were the boys from the “other side” of the school who talk fast. I called the school to ask what was going on and they explained that because of the cuts in the budget they were forced to adjust the routes and add children to some buses. I told my son to try and avoid these boys. He said that he was, but I was still very nervous.

About a week later, I received a call from the transportation department telling me that my son had an “accident” on the bus. As it turned out, they added a child in a wheelchair on the bus. As the driver left the bus to help the child, one of the typical boys got up and began to say very unpleasant things to my son. My son is a very loving boy and has never said anything unkind to anyone on purpose. He does repeat sayings; but as soon as he learns that what he just repeated it is not nice, he never says it again. As this boy was talking to him, my son just smiled at him because he did not understand what was being said to him.

To make a long story short, my son ended up with a black eye and a swollen nose.  When I got to the school office and saw him, I was so angry. I began yelling at the head of transportation, asking him what in the world was he thinking putting a child like that with a busload of special needs children. My son immediately got up, grabbed my arm and said, “Please mom, don’t be mad at them.” I turned to him and asked, “Who should I be mad at?” My son looked at me and said, “It is not that boy’s fault; he just didn’t know me. If that boy really knew me, he would not have done that. He would have been my friend.”

My son never sees the bad side of anyone. He consistently thinks that everyone is nice, and if someone is not, it is just because things have not been explained to that person. He never says anything mean or hateful about anyone, no matter how they treat him. We could all learn a lot from our special needs friends. I sometimes think that we are the ones who need the special training to be nice and tolerant of each other.

“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.

How to Prepare for a Hurricane When You Have a Child With Autism

September 2, 2010 7 comments

My house after Hurricane Gustav

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.

This week marks the fifth anniversary of Hurricane Katrina, the nation’s largest natural disaster to date. Our own family was severely affected by the storm. Katrina ripped off portions of our roof and the siding from our house but the most destructive part came a few days after the storm when crews were clearing sewer lines pumping gallons of raw sewage into our home. We were without indoor plumbing for close to four months.

I was completely unprepared for Katrina and did not respect it for the storm that it was. As a result, we were looking for food supplies and water from neighbors because we were so sick of drinking diet strawberry-flavored soda water which was all they had left at the store when I got there. People don’t realize that when a storm like this hits that it can take days to start to get shipments of food and water back into an area. Baton Rouge is located approximately 60 miles northwest of New Orleans. I never imagined that a storm of that size could create such a disaster with us living that far inland.

Three years later our home suffered extensive damage with Hurricane Gustav. A neighbor’s tree landed on the back of our home and this time we had to move out for nearly seven months while it was repaired.

With Hurricane Earl bearing down on the eastern seaboard in a couple of days, we wanted to take the time to remind families how important it is to evacuate. The damage from Hurricane Gustav taught me that. While we weren’t at as much risk for wind or flooding damage from that storm, I never would have expected a tree located nearly 80 feet from my home to cause that much of a disaster in our lives. If we had been home we could have been killed easily. I was so grateful that we were not and will never ride out one of these mega-storms again.

Evacuating with a child with special needs, riding out the storm or surviving the weeks of no electricity that follow are stressful and difficult. Our children depend on routine and there is nothing that obliterates a routine like a hurricane. Weeks without electricity make cooking and daily life very difficult.

You have to plan ahead.

Some lessons we learned following these recent storms that we would like to pass on to our East Coast buddies from the Gulf South include:

1)      Be prepared! Stock up on food supplies and water.  Make sure you have enough to go for at least a week to 10 days.  One gallon of water per person.

2)      Fill up your bathtubs so that you are able to flush your toilets.

3)      Make sure you have your important documents – including birth certificates, insurance documents and IEPs in a safe and handy place. If you evacuate, bring this with you in the event that you have to relocate temporarily after the storm passes.

4)      Fill your car with gas and save a couple of gallons at your home if possible.

5)      During the days leading up to the storm withdraw as much cash from your bank’s ATM as possible each day so that you will have cash on hand.  We forget sometimes the luxuries that electricity bring like the use of credit cards, which are rendered useless in a post-storm, cash-based economy.

6)      Stock up on charcoal so that you can cook on the grill.

7)      If you evacuate, put all of the things in your refrigerator in a garbage bag and put the bag back in the fridge.  If you aren’t able to return for a week, you will thank us that all you have to do is hold your nose and grab one bag out of the fridge/freezer.

8)      If you evacuate to a shelter, consider going to a shelter at a church or school where your family might be able to have a quieter, more private Sunday School/classroom. Sitting in a large gymnasium with lots of people can be extremely stressful for our children.

9)      Be sure to pack enough medication for two weeks and be sure you have prescription numbers for refills if needed.

10)   Make sure to have first aid supplies on hand and readily available – including mosquito repellant (because they are awful after the storm hits) and sunscreen.

11)   Don’t get all caught up in the hype. Don’t get overly dramatic.  Parents that are stressed out invariably stress out their kids.  The more calm you can be, the better your children will be able to handle this disruption in their lives.

12)   Stock up on batteries and flashlights. Candles can be used if your kids will stay out of them. Mine never did so we use flashlights only.

13)   Do not go outside to go look around. It is everyone’s first thought to go outside after a storm to survey damage but don’t bring the kids outside until you know it is safe. Downed power lines can be everywhere for days and it is difficult to determine which ones are live.

14)   Be careful about snakes and insects – especially bees, wasps and fire ants because their homes have been disrupted too and they are likely looking for new ones … and stressed out and angry too!

15)   Pull out that battery operated radio from the 1980s that you have stored in your garage to stay informed of the storm’s progress.

You can find an excellent evacuation checklist here.

We encourage all families to evacuate and stay safe during this hurricane season!

The 20th Anniversary of the Americans with Disabilities Act: A time to Celebrate and to Review our Commitment

July 27, 2010 1 comment

This is a guest post by Steven Beck, Vice President of the Down Syndrome Society of Northern Virginia and father of a 10-year-old daughter with Down syndrome.

My name is Steve Beck and I am, most importantly, the father of two beautiful 10, and 13-year-old daughters and husband to Catherine.  My 10-year-old daughter has Down syndrome. One result of my younger daughter having Down syndrome is that I have become increasing involved in volunteer work at both the local and national levels. Currently, I am Vice President of the Down Syndrome Association of Northern Virginia and a Board Member of the National Down Syndrome Society.

As we spend time this week celebrating the 20th anniversary of the Americans with Disabilities Act we need to also re-commit ourselves to moving forward. By prohibiting discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications, the ADA has provided people with disabilities access to all parts of our community both socially and economically. Guaranteeing access is one step, but providing the tools and supports needed to fully engage that opportunity is a different issue. One of the primary tools needed for all Americans and their families is the opportunity to plan, save, and invest money that can be used to pay for critical needs such as education, healthcare, and retirement.

Over the past four years I have been working with group of national organizations, including Autism Speaks, to pass the Achieving a Better Life Experience or ABLE Act of 2009.  While government systems such as Medicaid, SSI, and SSDI provide a wide variety of critical supports for our community they simply cannot cover the full array of needs. In addition, many of the rules that govern them drastically limit individuals and their family’s ability to plan, save and accumulate assets to help fill these gaps. As a result, people are forced into poverty just in order to maintain access to these government benefits.

The ABLE Act would establish a savings instrument similar to ones that all other Americans have access to through 529 College Accounts, Health Savings Accounts, Individual Retirement Accounts, and 401Ks.  Like these accounts, ABLE Accounts could be set up and managed with little or no cost. The money can be controlled by the individual, their parents, a guardian, or third-party based on decisions made by the individual and their family. There is a very broad array of qualified expenses the money can be used for including healthcare, transportation, education, housing, community based support services, employment training and support and other life necessities. The money in the accounts grows tax-free and can be distributed tax-free as long as it is spent for a qualified expense. Most importantly, the assets held in the accounts cannot be used to disqualify individuals from critical means tested programs such as Medicaid, SSI and SSDI.

Now is the time to provide individuals with disabilities the same types of financial tools that all other Americans use to save for their future needs and to pay for critical parts of everyday community living. The ADA was passed 10 years before my daughter was born and I was still in college. I started working on the ABLE Act when she was eight, and she will be 11 in November. We cannot afford to wait much longer to start saving for her future and neither can millions of other Americans.  I want and demand that she have the same opportunities to attend college, get a job of her choosing, and live independently, just like her older sister.

The ABLE Act (H.R. 1205) has 190 co-sponsors in the House and (S. 493) has 24 Senate co-sponsors as of July 24, and well over 40 national organizations supporting its passage.  Please, visit www.autismvotes.org/able to contact your members of Congress and ask them to pass this important bill into law this year.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

Coming Out: Autism in College

July 7, 2010 21 comments

This guest post is by Autism Speaks staffer Kerry Magro.  Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.

Some of the biggest fears I’ve ever had in my life are the fear of the unexpected, fear of change, and the fear that I would be looked at differently. This all came into focus my first year of college at Seton Hall University. Before college, I had only told a few people that I was on the spectrum. This was mainly because when I was younger, when my parents would tell me I was autistic, I would have no idea what that meant or how that affected me. I only knew one thing – I was not artistic.

In both grammar school and high school, I never felt the need to tell anyone either since I went to a private school, Community Lower/Community High School in Teaneck, N.J., for students with learning disabilities. There was a certain comfort that I enjoyed, knowing that I was with others I could relate to. We all had something with some letters so it wasn’t a big deal.

When college came along, I didn’t know what to expect. When I was deciding on what college to go to, I chose the college that best matched my future career goals (sports management), not the school that would be best match my disability (a school with more accommodations). While well-meaning, the idea of me surviving at a post-secondary program which wasn’t the recommended choice by my high school academic advisors. They saw it as a huge mistake, which they thought would hurt me in the long run. I honestly could care less, looking back.

This brings me to the day I came out about my disability publicly. It was during one of my freshman classes in “Oral Communication.” My professor had told me to pick a topic that I knew a lot about to speak about for 10 to 15 minutes. The obvious choice in my mind was to pick autism, considering my public speaking skills were still very limited and I thought it would be an easy subject to talk about because I know a lot about it. The theme of the presentation was going to be “how autism impacts playing basketball while highlighting the story of Jason McElwain’s historic game, which illustrates how someone with autism can overcome the odds.”

For those who don’t know Jason McElwain, he was the high school basketball team water boy, who has autism, turned basketball star. He didn’t play one game in high school, until the last game of his senior year when he scored six three-pointers in a matter of minutes. This game became one of the bigger underdog stories in recent memory. So now I was set.  I would speak about him for five minutes, present a general overview of autism for another five minutes and than close by telling them that I had autism.

The day of the presentation, everything went according to plan. I had spoken about all of my main points; however, when it came down to telling my fellow peers I had autism in my closing statement … I froze. The thoughts that were running through my head were endless. What happens if they treat me differently? What happens if no one wants to have anything to do with someone who is different? Finally, after I started speaking again I reminded myself that the one fear, the one fear that I never want to let take the better of me is the fear of being who I am. Being me had taken me to a post-secondary education and being me was the only way I was going to get through this presentation.

At the end, my closing statement of my presentation was: “Autism can not define who you are, only you can define autism. I have autism so I know especially, and I ended up the captain of my high school basketball team so I can relate to this message.” As soon as this was said, I was applauded and given a standing ovation by both my professor and my peers. This was a wonderful feeling.

After the speech, I was very open to all my peers about being on the spectrum and have been since this day. Many people, both with autism and not, ask me if telling people I am on the spectrum was a mistake, and truth be told it has only made me stronger. Granted, things are not perfect. I am still judged and looked at by countless people as broken. I don’t dislike these people, however I pity them. People are still very unaware, sometimes ignorant and sometimes afraid of what might be different. During my time at Seton Hall, I have founded an organization to spread disability awareness called Student Disability Awareness (SDA) and founded a non-profit called KFM Making a Difference in the Community. Both of these organizations have meant a lot to me as I continue to promote disability activism throughout New Jersey. Since the days of that Oral Communication class I’ve gone on to speak at several different venues about my story and am hoping to continue to mentor and help those with and without disabilities who want to become more aware of disability awareness.

In Their Own Words – What Our Hearts Knew From the Beginning

July 3, 2010 16 comments

This “In Their Own Words” essay was written by Jessica Fournerat, who has a five-year-old son with PDD-NOS.

This is hard for me to admit, but as I meet more and more parents in similar shoes, I feel more comfortable opening up about my feelings about having a child on the spectrum.

All my life I have been a helper and have felt a calling to reach out to others, a calling that I never seemed to find the right way to fulfill. All the while I swore I would never have children.

Flash forward several years and I was pregnant in a new city with a new husband. I found myself in a quiet moment talking to my God.

“Ok, so God here’s the deal. I know I’m an older mom and that my baby may have challenges. That’s okay, I can love any child, but I am not sure I am up for the challenge of a child with autism. I don’t know how to relate to someone who is shut off from the world.”

You see, like many people who had no experience with autism, I was under one huge misconception. Those children with autism were emotionally cold and could not feel love for or from their parents.

Well, God answered my prayer and gave me the most amazing child I could have asked for. Jaxson was a smart, funny, stubborn, super active child with an amazing sense of empathy. Soon after learning to walk he blessed us with what we called “Run and Hugs.” He would run from the other side of the room, crash into us and hug us so tight.  Sometimes he would come up behind me and just squeeze as tight as possible and smile. He would cry when he saw sad children on TV shows far before children are supposed to develop empathy. As I learned more about autism, I learned that some of this was sensory seeking, as well as auditory processing issues. But I don’t care what label you put on it. This boy could LOVE.

Jaxson could not communicate verbally until he was three and a half. But he could get his point across. He once used a combination of sign language, gestures and PECS to communicate quite clearly that he wanted our cat Harley to eat a banana. There was no doubt that was what he wanted and when I held the banana up to Harley’s mouth he exploded in laughter and gave me the biggest hug. It was like he felt so wonderful that I understood him.

Not long after, we obtained an augmentative communication device for Jaxson and he took right to it. He was speaking on it the same day that we went to try it out.  This device opened the door for him and in the blink of an eye he was using his words verbally.  He started with Numbers and moved to the alphabet and soon it was words. What was great was that with the sentence structure of the Dynavox when he started talking it was sometimes in full sentences – “I want more juice, please.”

But the most amazing moment, I think, was walking in on him practicing the word “Mama.” He was saying it in a guttural tone and it seemed like it was important that he get it right first. Within days of that moment, he began to say “Mama” regularly and my heart just exploded.

All the experts we have dealt with have been amazed by Jaxson’s success.  They did not see what I saw from the very beginning – a young fireball with his hands reaching out to grab his future and direct it where he wanted to go. I always knew that even when he could not speak our words, he most certainly could understand them. I am so happy that the world can now start to see what our hearts knew from the beginning, that these children are so much more than any label and that they have countless gifts to give the world.

Jaxson has brightened my world. While the challenges do often arise, I find that it is his spirit, love and perseverance that keep us moving forward. I have found my way to reach out. I need only reach out within my own home to find my chance to help and be helped by a child so extraordinary.

“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 – Silent Language of Love

On Monday afternoons, Ethan, our ten-year-old with autism, attends a gymnastics class with eight other children who have a range of different special needs. Today has been a hard day for Ethan—there’s a note from school referring vaguely to “an incident at the computers” and later, a refusal to do any math at all. I’m poised in the lobby by the window that offers a little view of the class, ready for the worst—a blow-up, a melt-down, something—and instead I watch Ethan blink with surprise at a new girl walking into class. Taller than him by at least five inches, she has striking red hair, glasses, and Down’s syndrome. Right away, I can see that, for whatever reason, she has captured his interest. He flutters closer and examines her from different angles, a technique he usually reserves for particularly interesting machines. As they move through their warm-up routine, he positions himself as close to her as possible. A few minutes later, they are partnered to run through some somersaults and cartwheels together.

If I were in the room with them, I’d be barking directions and prompting conversations because I’m his mother and can’t help myself: “Ask her what her name is!” “Tell her yours!” “Find out what school she goes to!” In my heart of hearts, I know he’d probably do as he was told and, I suspect, the interest would die because pushing him into the realm of ordinary conversation has never interested him.

Instead, as she cartwheels, Ethan squeals with laughter, bounces up and down, and then turns serious: “Nice cartwheel,” he says, staring at her feet.

For Ethan, language is a perpetual stumbling block. Asking a question is a dangerous invitation to getting a question asked back, to launching in on the exhausting business of talking back and forth. Recently, though, he’s learned that compliments serve nicely as predictable and brief conversation starters.

“Thank you,” the girl says, nodding and readjusting her glasses.

Usually an exchange like this would do the trick for Ethan and be enough bonding for one day. He’d go off and find a heating vent or a light switch to examine close-up. But today, he stays with the girl, and—I can hardly believe it—never takes his eyes off her.

For the rest of the class they say nothing, but stay in each other’s vicinity. There’s a thumbs up at some point and even, when they get to the trampoline, a smile from her. At the end of class, they are meant to shake hands with their teachers, which Ethan usually does, but today he skips past his teachers to poke his hand out in the direction of his new crush. For a horribly long moment, it hangs there, hovering in the air between them. I send up a silent prayer: let her shake his hand, let her do something. Though he’d probably make a speedy recovery, I fear my heart will break if she doesn’t.

Then she surprises everyone: she looks down at both her hands, chooses the wrong one and gives it to him. As the room empties around them, suddenly they are standing side by side, holding hands, looking—more than anything else—stuck.

Is this terribly awkward? Are they dying of embarrassment? The woman who must be her mother and I exchange glances. Should we sail in and fill this silent tableau with our chatter and the exchange of names? Because she holds back, I do too and eventually they manage to end the moment themselves. Ethan notices a light switch he hasn’t flicked today; she spots her shoes, two ruby-red slippers to match her hair.

After it’s all over, Ethan says only this: “I liked that girl.”

Why, I wonder. Why did my son, who is afraid of new people, who needs to be prompted to notice other kids, take such a shine to her? I can only think he must recognize something in her face about what they share—that he knows, instinctively, the world is hard for her, too.

I’m still thinking about this scene the next morning at the bus stop. In our struggle to help Ethan gain speech, we have tried virtually everything that books have offered us. He’s got some sign language, enough that any time we yell, his hand fly up to his chest and beat out I LOVE YOU over and over. We make him ask questions, two of us at every dinner, two of his brothers; we prompt him through stories, start his words for him. We have forced Ethan to talk every single day and though I’m sure this was right, I also wonder if we haven’t learned something ourselves from his reticence.

When you don’t talk much, there are many things you also don’t do: you don’t make up stories, you don’t lie, you don’t exaggerate the truth to make everyone laugh and/or feel sorry for you. You also don’t manipulate, or bore people without realizing it. I’ve spent years being jealous of parents with chatty children until I got one myself and realized: Ah yes, some children do go on and on, in a way that isn’t always dreamy.

At the bus stop, Ethan’s two younger brothers are infinitely smoother than he. One chats up another mother with a story of closet monster, the other chucks sticks on a roof with his friend from up the street. Ethan as always, stands alone, humming, with a nervous eye on the horizon for the bus. Though he never talks at the bus stop—there’s too much to do, watching for the bus—he’s recently started a new practice of hugging the other mother and me as the bus pulls up. Usually he whispers what we should say before we can: “Have a good day, Ethan.”

It’s inappropriate, no doubt, and something we should probably discourage before he gets to middle school, but for now, the other mom loves it and smiles afterward. And there’s also this; our blissfully typical six-year-old says goodbye by chucking me his stick form the bus steps and calling, “Hold onto that until I get home.”

We have learned that silence is a cloud with its own silver lining. What Ethan manages to communicate in his odd ways—in his gestures, in holding hands with that girl, in his morning hugs—can seem, at times, truer than a half-hour of his brother’s nightly laments about playground popularity. Is Ethan bonded to others? Does he communicate his feelings? Sometimes I think that in the absence of easy access to words, there’s a way he says the real things better than the rest of us.

This “In Their Own Words” essay is written by Cammie McGovern and was originally published on AutismSpeaks.org.

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 – 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.

In Their Own Words – Redemption

January 26, 2010 Leave a comment

It was the day before Thanksgiving and our daughter’s elementary school was having a Turkey Trot, where the kids run a mile while chasing an older student dressed up in a turkey costume. Of course, I was there to cheer on our first grader, Joan, who has autism, as she did her best to keep up with the other children. As all of the students started crossing the finish line, I noticed Joan had barely made it through half of the course and was visibly upset. Her teacher went running out on the course to hold Joan’s hand and ran the rest of the course with her, but it didn’t do much good. She kept calling herself a failure because she lost. My heart was breaking as I remembered the sinking feeling I had as a child when I wasn’t as good of a runner as everyone else. In tears, she went back to her classroom to finish the school day.

After school, she was still upset when she came home and just wanted to hang out with her daddy. Then the phone rang. On the other end of the line, a lady asked to speak to the parents of Joan (having the majority of our calls begin like this, I was sure it was related to services or appointments of some sort). I explained I was her mother and asked what I could help her with. She told us she was calling from Bear Essentials Newspaper and had great news for Joan; she had won the holiday coloring contest for her age group and had won four tickets to the Snow Queen ballet performance. I ran into the living room with the phone and explained to Joan she had won. Her eyes lit up as she jumped and flapped her arms across the living room; it melted my heart. On a tough day when her emotions snowballed and left her feeling like she couldn’t do anything good enough, she was redeemed by a simple phone call and a coloring page of the nutcracker prince.

We told her we would take her younger cousin with us and took them both out to buy special outfits so they could dress up to go to the ballet. Although we were very nervous about Joan going into sensory overload, the performance was in a small theatre without a loud sound system. We made it through the entire show and we were able to celebrate her accomplishment and help her feel like a superstar. Before the show began, the director of the performance came out onto the floor and found us. She pulled Joan aside and told her how proud she was of Joan’s picture and that she had it hanging up backstage so all of the dancers could see it. A few days later we received an e-mail from the director, wanting to know what Joan’s favorite part of the performance was.

In a world where special children aren’t always included or recognized in a typical light, this time it seemed everyone went above and beyond make sure Joan was treated as anyone else would be. There were no discriminations or wayward glances; it was all in fun and freedom. Even though she didn’t do very well running the turkey trot, that same day she was blessed with someone else acknowledging that she did, indeed, do something well enough to receive an award.  

This “In Their Own Words,” is written by Melissa Bocconcelli of Arizona.

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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