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In Their Own Words – Tis the Season…

December 31, 2010 13 comments

This “In Their Own Words” is by Shelley Stolaroff Segal. Segal is a playwright, performer, and essayist living in Greensboro, North Carolina.  Her latest play focused on autism and race and was performed at the Manhattan Repertory Theater and TEDxEast.  Her fourteen-year-old autistic son, Josh, is her divine inspiration, as is his equally divine twin sister, Jordan.

This is the time of the season when I summon my gratitude, reflect on the past year, and count my blessings.  I do this even though my son is going through puberty and I am going through my chocolate.  Josh is low-functioning and non-verbal, but ridiculously cute.  (Except when he’s practicing his latest obsession, snapping plastic items into shards.  Cutlery, C.D.s, DVDs, hangers, you name it.  His favorite two words now are “Bake it.”)

However, he’s still charming, and I want to recognize my blessings.  So in the spirit of the holidays I have listed a few of my favorites:

*I’m grateful the cats pretend to enjoy it when Josh “plays” with them.  They have as much fun as they can stand before fleeing.

*I’m grateful that when Josh drives me to drink I can grab a petite café mocha and it still packs enough punch to hold me until bedtime.

*I’m grateful for Josh’s laugh.

*I’m grateful that when Josh breaks a C.D.  it’s usually one of my carefully planted decoys.  I’d rather him snap a blank CDR into pieces than one of my Led Zeppelin albums.  Most of our sacred, recorded material now lies in the safe. Including the wedding video he targeted three months ago.

*I’m grateful my son likes to hang out with me in coffee shops. And yes, I do cheat on the gluten thing sometimes.

*I’m grateful that Josh’s childlike, high-pitched shriek has been supplanted by a low, pubescent growl.  However, that yucky in-between voice can be ear-itating as well.

*I’m grateful that Josh’s twin sister, Jordan, still loves to show him off even when he struggles to embarrass her.  Her friends might not get the plastic fixation but they enjoy his sense of humor and his quirky new devil voice.  The growl is even better.

*I’m grateful my family’s still happy, and that we’re learning to enjoy the holidays a bit more every year. We’re not half as dysfunctional as most families I know during this season.   That’s the biggest blessing of all.

“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 – Dear Future

December 16, 2010 30 comments

This “In Their Own Words” is by Stuart Duncan. His son Cameron has autism and was diagnosed at two and a half. Stuart lives in Toronto, Canada. Check out his Facebook and Twitter.

Dear Future,

I have to be honest, I don’t know you very well.  I don’t know if I can count on you or how reliable you’ll be. I’d like to think that you have only good intentions and that you’ll only get better, but I’m not naive. I know that you’re just as uncertain as I am and quite frankly, that scares me.

You see, my child has autism and as such, the past has presented me with a lot of fears as well as challenges that I’ve had to learn to overcome. I’ve also had to learn how to teach my child to overcome them. The past tends to remind me of those that turned their backs on us, had nothing left to help us with, gave us a lot more questions than answers and basically dropped a bomb on us before leaving us to the cold. To put it mildly, the past has not been too kind to my family. I’d much rather forget the past and move on, which is where you come in.

Dear future, I’m coming to you with an open mind. I know you’re not perfect and that there is already a lot of demand being placed on you. But I have to make you understand that I have a lot riding on you as well. I need you to be kind and compassionate. More so, I need you to have a lot of understanding and to be very accepting.

You see, I don’t know how much longer I’ll be around to take care of my child. And my child needs me so very much. Autism has made my child and I feel very alone in this world. We are looking to you to pick up where I will eventually leave off. I will be depending on you to be there for my child when I no longer can be and I’ll be depending on you to be bright and loving.

I am doing the best that I can now to prepare my child for you, but that’s a daunting task for the best of us. Since my child has autism, it’s just so very much harder. My child needs more guidance, more support, more understanding and more acceptance. The present provides some of these things and it has been helpful. But if I wasn’t here, it wouldn’t be enough.

The present is very nice and friendly but to be honest, I feel like I’m in a dentist’s waiting room and the present is the receptionist. I’m asked a lot of questions to which I answer, but have no idea what any of it means. I’m made to feel welcome with some magazine articles to read and the present even makes some small talk that resembles information sharing. But again, gives me no real answers.

For what seems like forever, I sit and stare at the present while they are constantly writing things down, filing things and taking phone calls from everyone and no one, while I sit there trying to keep my child calm. We’re waiting for you… the future.

Dear future, I’m going to need for you to be prepared. I need for you to do more than just wait until I get to you. The past gave me an awful lot of questions for which the present had no answers to. I will be needing you to provide those answers.

I can’t imagine what life will be like for my child if you don’t have those answers. Answers such as where my child will live, and with whom. Will my child job have a job waiting? Will there be better medications and treatments available that offer more consistent results? Will there be love waiting for my child with the possibilities of a family as well?

I have no one else. You’re it. I’m sending you my child whether you like it or not… for better or worse. Dear future, if you’re not ready for that, please do whatever it is you have to do to be ready. My name will be called soon and my child will be needing you. So I’m needing you right now. Please be ready.

“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 – Flying

October 12, 2010 3 comments

This “In Their Own Words” post is by Jane Parker. She is the wife of a State Department Foreign Service Officer currently living in the DC metro area.  Check out Jane’s blog, Spectrummy Mummy, where she writes about Pudding (3, Asperger’s) and Cubby (18 months, not yet diagnosed).

Two kids, one mummy and a swimming pool. Pudding has always loved the water, but has no fear of it. Cubby is brave enough in a kiddie pool where he can stand up, but terrified in the big pool. Usually he won’t allow any part of his head to touch the water, and makes a sorry sobbing sound if I so much as transfer him to my other hip.

So going to the pool without Spectrummy Daddy in tow is a bold move. This is DC in August. It has been a scorcher, and the humidity factor can be unbearable. When we do brave the playground, the mosquitoes ravish my exotic English suck-me skin, the resulting wounds last for weeks.  Yuck.  Stuck indoors all the time, Pudding can’t help but find trouble.  At times I feel like I say nothing but “no” to her.  I’m weighed down from being so negative.  We’d been inside too long, it was time.

We’d had some problems before in getting her to wear her swim vest, but if she put it on back to front, she was fine. It kind of looked like I’d put my special needs child in a straight jacket, but she was happy, safe, and unable to reach the zipper to take it off.  I’m getting used to odd glances coming our way.  Luckily people tend to keep their small thoughts to themselves, which is just as it should be.

Cubby clung on to me the whole time, but there was no crying or screaming. At a few points, when he was splashing around and soaking his mama (which he says properly now!) quite thoroughly, he squealed with delight. Pudding just looked calm and serene, feeling all the lovely sensation of the water.  The pair of them, who have stretched my heart in ways I could never have imagined, were at peace getting what they needed.  I wanted to cherish the time.  I didn’t feel like the mother taking care of her high-needs children.  I was the special guest at this party.  I felt honoured to be in attendance.

After a while, she took to climbing out and jumping back in again, over and over. There didn’t seem to be much purpose to it, but she had the most beatific smile on her face, it must just feel right to her. So often I’ve taken for granted that my senses and my body work just as they should, I’m so fortunate.  I wish she could have that feeling more often.  I wish everybody could.  I’m just glad she gets to have her moments of it, and I get to share them with her.

One time as she took off, she looked at me and gleefully said, “I’m flying!” My heart soars along with her.  For that one sweltering afternoon, my love, we both were.

“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 – Can You Appreciate My Son’s Successes?

October 8, 2010 55 comments

This “In Their Own Words,” post is by Shannon Des Roches Rosa.  A version of this essay originally appeared on Shannon’s personal site, www.squidalicious.com, and on www.blogher.com.

Last week, my son Leo and I had the loveliest day together. It was a pleasant day, full of the kind of errand-running and necessary outings that might cause a neurotypical kid to grumble. But Leo, who has intense autism, was a great sport and good company as we trotted all over town. Still, I suspect we may have looked odd to folks unaware of Leo’s challenges, to observers who couldn’t know that it has taken seven years of hard work by Leo, his family, and his team of dedicated professionals and educators to help our boy behave quirkily when he’s out in public — instead of totally out of control. Instead of not going out at all. So, theoretical observer, let me interpret for you, in case you are curious about kids like Leo when you see them out and about, and wonder what is going on with that funky kid and his or her parents. Let me explain to you just how successful our boy’s day was. We started our day accompanying Leo’s five-year-old sister to her soccer team’s picture day. I held his hand the entire time, which probably looked odd as he is obviously not a small child himself. Why do I hold his hand? Because he’s less likely to bolt. Because noisy, swarming little kids make him skittish, and holding my hand helps keep him calm. While we were waiting for his sister to stop making faces at the camera, I introduced Leo to several parents. After I told Leo each person’s name, he replied on his own, “Hi, ‘Name.'” It was great to see smiles from parents who knew of Leo but had never talked to him before, and didn’t realize what a friendly, polite kid he is. Successes:

  • Leo didn’t bolt.
  • Leo waited with me during a non-preferred activity for 30 minutes, without getting impatient.
  • Leo didn’t treat the small kids like the bowling pins to his bowling ball. No one was scared of him, much less hurt by him.
  • Leo spontaneously inserted correct names into a social greeting, with eye contact, and with an appropriate response to a social question.

After pictures, the three of us visited a local cafe for a snack for the kids and coffee for me. Leo spied bagels in the display case and asked for them, so I told him and his sister to sit down at a table and wait while I ordered their food. But the barrista mixed up our order, which caused confusion and delay. I started to panic — Leo kept asking, “Want a bagel, please?,” which might have seemed weird to the other patrons. But for Leo, re-asking is a form of self-soothing and processing — he really wasn’t going to get a bagel immediately, that sucked, and he needed to deal. And he did! Eventually our food appeared, I sat down, and we all enjoyed our treats. Successes:

  • Leo waited calmly for a highly-preferred food item, and did not tantrum.
  • Leo accepted that another highly-preferred food item would not be coming his way, even though he could see it right there in that display case.

Leo and I became a dynamic duo later that afternoon when the rest of our family scooted to a Daddy-Daughter hootenanny. I decided to treat him to his favorite Indian restaurant, where he did a giggly happy dance of anticipatory “naan bread” joy. (His audible glee lasted only a few seconds and wasn’t too loud; if he had been disruptive to other patrons, we would have left.) Leo stayed with me as I pillaged the buffet, asking me for naan every thirty seconds. I reassured him each time that he could have his naan — but not until we sat down. He remained calm. Once we sat down, I tore off pieces of the naan bread and handed them to him instead of letting him have his own plate. My behavior probably appeared odd and controlling — a helicopter mom hand-feeding her chubby son — yep, that family’s got some food issues. But there was actually a lot of work, progress, and practicing going on, for those who knew what to to look for. Because every time Leo ate a piece of naan bread, he saw me dip it in my saag (spiced spinach puree) first. Our boy, who usually eats only six foods, but has been working hard on tolerating other tastes and textures, watched me put a non-preferred food on his beloved naan. And he still ate every single piece. Happily!

He then asked for mango ice cream. Since dessert is included in the buffet, I got him a bowl of the orange stuff. He tidily ate the entire thing himself, with a spoon — a challenge for a boy with fine motor issues. Successes:

  • Leo did not try to snatch naan bread from the buffet.
  • Our dietarily self-limited boy is now eating a spicy Indian food.
  • Leo used a utensil to feed himself a whole food portion.

Next I took Leo to get his beautiful but too-shaggy moptop trimmed. He let the stylist cut his hair, without any significant behaviors. Initially, he squawked and fidgeted — which I’m sure drew quizzical glances from other patrons — but once I brought out his iPod touch and held it so he could watch a favorite video, he settled down. The stylist could then chop off his luxuriant glossy curls, and buzz a clean line around his ears and neck. Successes:

  • Leo did not scream and cry and try to escape from the stylist’s chair.
  • Leo did not need to sit on one of the playground-style kiddie chairs. He sat in a regular chair.
  • Leo did not require a lollipop or other food item to comply.
  • Leo did not jerk his head around so violently that his hairline looked badger-chewed.
  • Leo was able to focus on a video during the session, and sit extra-calmly.

Leo, with his family’s and his team’s support, is still working on a lot of challenges. But I hope my description of these four episodes’ successes helps people appreciate kids like Leo under similar circumstances. I hope that instead of thinking, “Why is that kid behaving so strangely,” people will start to ask themselves, “I wonder just how hard that kid is working?” Because I bet you anything, those quirky kids — they’ve worked their tails off, just to be able to leave the house and appear in public. In Leo’s case, the goal isn’t even to blend in, but rather to be able to grocery shop, eat in a restaurant, go to the park, or get a hair cut without disturbing anyone else, or causing a major incident. We got through our entire day without having to abort a single errand — quite an accomplishment for such an easily overwhelmed boy. I hope, after reading this, you’re as proud of Leo as I am.

“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 – An Aspie’s Dream

September 18, 2010 6 comments

This “In Their Own Words,” is written by Aaron Likens from St. Louis, Mo. Likens is the author of “Finding Kansas: Decoding the Enigma of Asperger’s Syndrome.” To find out more, check out his blog here.

I want everyone to know that for the most part, I am happy. It is my dream that people learn this. I may have some challenges, but I am not defective. I don’t deserve or need your pity and am happy being me.

There are times when the world tries to get me to fit in, and sometimes I try, but there are other times when a social situation may be too much for me. I have had situations in the past where I have been called weird or odd for trying not to fit in. It is my dream that the world begins to not only know about us on the autism spectrum, but begins to understand us.

We have a lot to learn from each other. I look at, sometimes completely perplexed, how two random people can have a conversation. I know others look at me, completely perplexed, when I get excited about a random fact that I recall about auto racing, or when I have the ability to learn some new obscure facts. It is my dream that the world comes to realize that socializing can be difficult the same way it would be for you to recall minute details from the 1992 Indianapolis 500. We are the same, but different.

It is my dream that I never have to apologize to again. This can only come from understanding. Being on the spectrum isn’t something to look down upon! Yes, it has its challenges, but it has its blessings. Each person is unique. Let’s cherish the uniqueness and not look down upon it. In my mind an apology like this is reserved for something really horrible, and I don’t see it that way. I hope, and dream that, eventually, all will see this.

I dream what everyone else dreams about. I want to have a full, productive life. I want a family, a career, and the ability to live my life to the fullest. Some people seem to think that an autism label is the end and that to dream such things is a waste of time. No dream and no person is a waste of time. Yes, we may need to work harder at some things, but if we’re not given a chance then how can we succeed? There is so much potential in a mind on the spectrum, but if not given the chance how can one dream of the things that I dream about?

Finally, my biggest dream is a day where the word autism doesn’t draw a repulsive reaction for those who aren’t affected by it. Autism has to be one of the most misunderstood conditions, but understanding is coming. I haven’t had to debate someone on what autism is for quite some time. When I say “asperger” people don’t think of a food item or Olympic venue (sad, but true!). Everything in this world started as a dream, and my dream was already started by countless of people before me and I hope I can do my part in fulfilling it. I know I am not alone in my dream. All of us can do some part in educating some one; whether it is a school, politician, or a random person in a grocery store. I feel the world is listening and is open to learning about us. In all reality there isn’t that much that separates us; we’re all people, we all have dreams, and for us on the spectrum we just have different traits. We have feelings, we can be scared, and most of all we just want to be understood. This is my dream.

“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 – Georgia’s Story

September 16, 2010 10 comments

This “In Their Own Words” is by Paula, a mother in Brazil. She requested her daughter’s approval before writing this story. They agreed to call her Georgia to pay homage to her favorite movie director, George Lucas. This story was translated from Portuguese.

When my daughter was first placed in my arms I noticed a unique and exotic beauty, a different kind of beauty. “Different” has been a key word in my life for nearly 22 years. There was something mysterious about her development, which was not only intriguing, but also concerning. I shared my fears with my husband, who did not notice anything different about her. To a certain extent he was right. Georgia was delivered through natural birth at 45 weeks and 5 days. By 3 months of age Georgia had a firm head, and by 7 months she could sit without any support. It wasn’t until years later that I found out that sitting in a “W” position was not appropriate.

Back then I did not know her diagnosis; I was living in a seesaw. At times I would feel restless and fearful, at others blissful. I was happy when Georgia crawled at 11 months, and when she began to walk at 14 months. Little did I know that her walking rhythm and speed were not appropriate.

My fears and anxiety were increased by our aloof relationship. I breast-fed her until she was 7 months, how could she refuse my touch? Why would she reject my arms yet embrace a stranger’s arms?

I was intrigued by her fine motor skills. She did not use her thumb to grab a toy.  When her attempt to get a toy had failed, she would then use her thumb and pointer, her pincer grasp, to get a toy.

I took Georgia to regular appointments with her pediatrician who claimed that she was fine, and reminded me that not all children have the same developmental pace.

I was visiting my mother with Georgia, then 8 months old, when the power went out. We placed some candles around the house; I put Georgia on the table and tried to call her attention to a candle’s light. I noticed that her eyes were pointing in different directions. One eye looked straight ahead, while the other eye turned inward, at this moment I yelled for my mother: “Mom, I know what Georgia’s problem is! She is blind! That explains everything.” We desperately called a friend of my mother’s, who was an ophthalmologist, and asked him if he could examine Georgia right at that moment.

I was much calmer when we left the doctor’s office. He told me that Georgia could see from both eyes, but she had divergent strabismus. We visited a few other ophthalmologists who agreed on the diagnosis, but not on the treatment. Some recommended surgery, while others recommended orthotic therapy to strengthen her eye muscles. We opted for orthotic therapy, which worked on improving the eye’s stability and balance, and on enhancing the integrity of overall eye muscles alignment. A few hours a day, seven days a week Georgia wore an eye patch on the eye that was considered to be working well, to force the malfunctioning eye to work more and, therefore, improve its sight.

By the time Georgia was a toddler she developed myopia and began to wear eye glasses. After a few years I decided to have her reevaluated and the new doctor suggested that we change the lenses sphere which practically cured her of the myopia. Since then she made great progress on making eye contact. However, at times when she felt tired she would avoid eye contact. There was no explanation for her inability to sustain eye contact.

At around this time I took Georgia and my elder son to a birthday party. At the party a man who was a retired pediatrician approached me and said: “Your daughter should see a orthopedist.” When I asked him why, he replied: “Because when an orthopedist sees your daughter, he will tell you that she actually needs a neurologist.” When I asked him what was Georgia’s problem he remained silent. At that moment I felt awful, like the world had just fallen on me. We left the party immediately. I felt vulnerable, emotional. I felt sad, enraged, and regret. I thought: “what if he is right?” Deep down I knew something was different.

The next day I took Georgia to see her pediatrician. I told him what had happened the night before, and shared my fears and concerns regarding her development. I spoke about her apathy towards me, could she be deaf? I asked him to help me find a diagnosis and to referrer me to a competent neurologist. He gave me a few referrals, and told me that Georgia was not deaf.

I took Georgia to a myriad of orthopedists that had divergent conclusions on her diagnosis and treatment. Some suggested that she should undergo surgery and remove one of her foot’s ligaments. They claimed that by doing that her posture would be improved and she would be able to have more control over her body. Some doctors mentioned low muscle tone, which I thought was a consequence rather than a cause. Other doctors recommended physical therapy to strengthen her leg and eye muscles. I opted for physical therapy because it is less intrusive and aggressive.

I finally managed to get an appointment with a neurologist, who examined her and concluded that she had Borderline Disorder. He explained to me that Georgia’s nervous system was developing very slowly, and that was the reason for her developmental delays. He claimed that she needed more stimulation and asked me to do so, in other to help speed up her development. The neurologist requested several exams, which indicated that all was well. Then he requested a CAT scan of her brain. The CAT scan showed a discrete ectasia of lateral ventricle. When my husband asked the doctor for further clarification he said that he could not say anything else without making additional exams. He told us that it might be nothing or it might lead to hydrocephalus, and the only way to know would be by performing regular CAT scans. My world was wrecked, once again. When we left the exam facility we went back to the office of the neurologist who had requested the exams, who said not to worry, because Georgia had a very little likelihood of developing hydrocephalus. He explained that she was too old to develop such a condition. Nonetheless, he requested a CAT scan to be done twice a year, and measured her head every three months.

This was our annual routine until she turned 7 years old, and because the results remained steady, from there on, she was only required to have a CAT scan every three years. But I still wondered: Could this really be the cause of her developmental delays? What about her fine motor skills? The doctors always told me that nothing was related.

I decided to resign from my job as a lawyer. I bought an apartment in Sao Paulo, where I lived with the children, and my husband stayed in our suburban home. We saw him only twice a week. I thought that by living in a big city I would have better access to top-notch doctors and treatments.

When Georgia was 11 months old, she received physical, occupational, speech, and hydrotherapy therapies three times a week. I sent her to a nursery school. I wanted her to engage with other children.

When her school friends could not come over for the weekend, I would invite her friends from acting school. I believe the acting classes played a major role on improving her social skills. I used any excuse to have a party, any holiday or religious celebrations. Children always came wearing a costume related to the occasion. I was always involved in her play. I wanted to make sure that she was not left out, nor would she withdraw from her friends.

Georgia learned how to read and write when she almost 6 years old. She always enjoyed reading and has an excellent memory. She displayed great interest in history and geography. She was slower taking school exams and doing homework, but she never showed any learning disability.

Before I forget, Georgia began speaking when she was 2 years old. She never learned how to ride a bike or dress up her dolls. However, she was very knowledgeable on the subjects she liked; sometimes she showed even greater knowledge than the adults around her. Georgia easily learned how to swim, but she struggled to learn how ski.

Georgia is a sweet and caring young woman. She enjoys social situations. But was not always like that. During her adolescence she experienced stages of irritability and anger. She refused to go out with her girlfriends, and eventually they faded away. During this time she was unable to make new friends, or keep the friends she already had. Her girlfriends began to flirt with boys and go out at night. Georgia, however, never showed interest for boys. She had a few crushes that never evolved into relationships. From time to time I noticed, and encouraged, great progress in her social life. Many times Georgia isolated herself from family and friends. When we were going to see a movie or a play she constantly asked to stay home, but I never allowed that.

Georgia’s answer to everything was “no.” So I accommodated our life style to keep her around us. We only had one television in the house, so that we could learn how to share. Share not only the television but also life. If she wanted to read in her bedroom, I would ask her to read in the living room, so she would stay with us. I always kept her busy so that she did not spend much time without an activity. The only way she would join the family activities was by obligation, but I did that because I knew that at the end, despite the stress to get her in the car, she always had a good time.

Georgia did not have a diagnosis for many years. In fact, it was only a few years ago that I learned about her diagnosis. Georgia has Asperger syndrome. Only four years ago I heard that autism was a spectrum disorder.

For much of the past 20 years, my main focus has been my daughter. Sometimes I felt guilty for not spending as much time with my elder son, who was only a year and an half older. I felt guilty for not demonstrating how much I loved and cared about him. I was very lucky, because he never complained; he noticed and understood that his sister needed the extra care and attention. Today he is a 24-year-old man and he is an amazing human being. I also have two younger neurotypical sons. I must confess that I was quite apprehensive during the last two pregnancies, because I suspected Georgia’s problem was hereditary since I have an uncle who is “different.” But I am so grateful that today at 15 and 18 years old, they are amazing brothers and have nothing but love, acceptance and respect for her.

I never had a doubt about having a big family. All of my children are unique; they live in their own universe. As a mother I try my best to treat them equally. I always give the same advice to my children: Try your best to achieve all that you want in life, but never hurt yourself or others while doing so.

Today Georgia is 22 years old. She is attending college with a major in cinema. Her interests have not changed, but evolved. She likes history, but not just any history, British history. About a year ago we talked to Georgia about her diagnosis. I hesitated to talk to her about it, because I was afraid she would lose her desire to live and chase her dreams. I was afraid she would lose her motivation to overcome the obstacles and even her own self. After we talked to her about it, she decided to stop her treatment with her psychiatrist. After 14 years of weekly sessions she decided she was ready to walk on her own. When I asked why, she replied: “I always wanted to know what the problem was. Now that I know what the problem is, there is no need to continue the therapy sessions.” Her psychiatrist helped not only Georgia, but also the whole family so although I was hesitant, I respected her decision.

Besides attending college, Georgia still sees a team of therapists who support her development. She receives therapies twice a week. She also has a tutor who helps her with her college assignments. Georgia does Pilates and aerobic exercises twice a week. She receives hippotherapy, and takes English classes. She has been to a myriad of classes, such as piano, violin, guitar, ballet, and pottery. She recently got her first job! She works in a pet store and has had two cats and many dogs.

Georgia gets to decide who needs to know that she is on the spectrum, and gradually she is learning how to deal with it. I think I can say today that among all mistakes and good decisions, telling her the truth about her diagnosis was a great decision. Although she knows there is no cure for her disorder, she continues to overcome her obstacles. Georgia still has lot to accomplish and improve, but she has amazing passion and I know she will accomplish her long-term objective to be as independent as possible.

As her mother, I have learned to handle and control my anguish. I try not to worry about the simple daily problems. Among the many things I learned from Georgia, I learned that some problems have no immediate solution, so all we can do is manage these problems in the best possible way.

Georgia has taught me to be patient, objective, happy and empathetic. During my journey I have met children, parents, and even entire families who struggled with the same issues, the same fears, anxiety, anguish, and even worse problems than I had. Most of them did not have the same financial and educational resources that Georgia had.

Like the adage says, “no pain, no gain.” Today I am one of the co-founders of a charitable organization for autism. The experiences I had made me realize that we must work for a common good. Each one of us can do something to promote change. One step at a time and love will keep us together.

“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 – Good Days and Bad Days

September 16, 2010 17 comments

This “In Their Own Words” is by Dorie Deebold, a mother of two children, one who has autism.

Our three-year-old son Pierce has autism – and we try our best to plan routine family outings for him and his older sister that we will all enjoy.

As is typical in any family, there are good outings and not-so-successful ones. For me and my husband who are relatively new to this strange new world, it is increasingly difficult to determine what outings will be a great success, and which may prove difficult for Pierce to navigate.

Before school started this year, we wanted to take a trip to Sesame Place.  Knowing how Pierce and his older sister loved the Sesame Street characters, and armed with the confidence that Pierce had experienced water parks this summer with success, we were all excited for a fun day.  However, this particular outing  would prove to not be one of Pierce’s best.  Something about the venue did not work with Pierce’s sensory system on this date, and it was a continuous struggle as we worked through the day of meltdowns, flopping on the ground and the consistent screeching of “We. GO.  HOOOOOOOMMMMMMME!!”

As difficult as it was, we were determined to stay and allow Pierce’s sister to enjoy the Park.

Late afternoon came; while Dad and sister were adventuring on rides, I tried to coax Pierce into his bathing suit to try a small water park – which generally he would love.  But the sand on his feet, the swim diaper, the direction we chose to walk there – everything seemed to be sending him into sensory overload.  It was all too apparent that he could not adjust to this environment today.

I found myself questioning again on this afternoon (knowing full well how non-productive this line of thought can be):  Why?  Why, why, WHY can’t he tell me?  Why can’t he tell me why this day, this place,  this particular routine was so hurtful.  What was it?  The music? We’d been to a festival with bands and he danced the day away just weeks ago.  The crowds?  It was no more crowded than the boardwalk was last weekend.  This mystery of why.  Times like these, I desperately wished to get in his mind to see the world from his eyes, to try to unlock this puzzle.

So I retrieved a sobbing Pierce from his curled-up position and wrapped him tightly in a towel. We found a lounge chair in a quiet area by the “Mini Tidal Wave Pool”  and both relaxed.   I  sat there whispering to Pierce how much I loved him, and how proud I was of him for all the work he’s done. Sitting there on a beautiful September day, watching all of the children play, I closed my eyes and felt us both relax from the high anxiety of the day. And we slept.

When we both woke up, Pierce looked up – dazed and tired – and smiled the first smile of the day.

“Pierce, do you think we should head home now?”

“Okay, Mommy?”

And off we went to find Dad and his sister.

Good days and difficult days – I reminded myself.  And we can’t appreciate the one without the 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.

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