Autism Today Foundation

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Know that you are not alone

I could hear my son counting in the other room as he washed his hands and tapped his foot on the ground, every number pierced my heart – when your kids are hurting, and you can’t help them it’s worse than when you are hurting. I would do anything to take away the pain both mental and physical that he experienced through his obsessive-compulsive disorders (OCD’s) but they were just part of our lives. Many diagnoses came in staggered, and we did what we could to manage them, with autism finally wrapping them all up in what you could say was a nice bow. That may seem strange to some, but when we finally received that diagnosis, it was a present it was the light we needed to move forward. From the time my son was born, I knew he was different – I could barely put him down. Not much would calm him, so I learned to find the few things that would work, and that was mostly holding him. For years he wanted to be wherever I was. We lived in a 2-story house with a basement and attic and even if I was in the basement doing laundry- he was with me, he even slept next to us. “Expert” after expert told us that “no, sorry” we can’t pinpoint exactly what is going on with him- no it’s not this and it’s not that, but let’s start with this diagnosis and see what happens. Then why does he have issues in social situations? Why is he so sensitive to certain clothes? Why does no punishment work? Do you know how many different positive reinforcement things we tried? Why do certain noises drive him crazy, yet he can make noise that doesn’t affect him? Why does he line stuff up? And it has to be just right for him or a meltdown ensues. All we wanted to do was to help him and eventually, through trial and error, we figured out what worked and what didn’t. We were determined to advocate for him wherever and whenever we needed to, and advocating allowed him extra help in school until we eventually received the diagnosis that enabled him to receive all the support he needed. Some think an autism diagnosis is an ending but for us, it was the beginning – it allowed us to research more and understand more. It allowed him to be provided with the help he needed in school, and the time for him to process. His intelligence was amazing but without the tools he needed to show what he knew he was frustrated. Imagine knowing the answer but being unable to express that knowledge through writing down answers or not being given the time to process your thoughts. Instead, he figured disrupting the class was the only answer for him. An autistic person’s brain processes differently; it’s not bad it’s different. We are all unique and sometimes we need alternative tools to express our differences. We are so proud of our son. He is now able to self-advocate, expressing what he needs. We taught him how to advocate for himself and express his needs because we are not always with him. He is in college now and we speak often about how he has been able to use his self-actualization tools to ensure he has what he needs. He’s following his dreams and doing what he loves, he’s a man who cares deeply for others, and he’s sharing his unique talents with the world. He’s a person that anyone would be lucky to call a friend. Know that you are not alone. If someone in your life has received an autism diagnosis know that others have been in your position, know that it means you now have what you need to support them, and never stop advocating for yourself and for those you love. by: Jeannette Paxia

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Angel Havens in the Clutter

As a Filipina-American, I need my home to reflect my heritage, my desire for a well-ordered haven. So I trek hours through stores and catalogs to perfect my “House Beautiful.” I’m ever on the hunt for clean designs with an Asian twist. Whenever I express a desired need, my special son Peter chides, “Just another excuse to go shopping, Mom. Another excuse, Mom.” Dark eyes in his tanned face melt my heart and keep me from scolding him back, most days. One day I set aside the catalogs, the shopping trips, and did something too rare.  I visited our neighbors, the Browns. We first met them when ours was the newest home on the subdivision block. The Browns watered our new grass while my husband, Andy, and I closed the sale of our old house in another state. They built their home a year before ours, so they understood the mishaps and mess of finishing a new house in a dusty construction zone. Actually, I walked across the street knowing my neighbors were gone. Nicole and Ken left with their youngest child for a well deserved vacation in Florida. Their parents stayed at their house, caring for pets and Ashley. Inside Grandma Colleen led me to see the precious seven-year-old, buckled and asleep in her high chair. Brunette tufts bubbled out like a fountain from her ponytail band. Her grandma beckoned me to sit, then said, “If you rub Ashley’s neck and massage her temples like this, you can open her eyes.” Like a porcelain doll, her lashes blinked open to reveal big eyes. Her brown pupils turned all the way to the right. Her cherry lips were kissable, yet wordless.  Grandma mashed a banana and announced, “Time to eat, Angel Face.” Angel Face was born with rare syndrome that scattered the gray matter of her brain. She has never crawled or walked.  She cannot talk. She must be spoon fed  and changed. Because of frequent seizures she’s given a host of anti-seizure medications, along with anti-nausea pills. Her parents are determined to keep her out of the hospital as much as possible, so  they’ve become her round-the-clock nurses. After a few banana swallows, Angel Face bent her head to suckle her chapped thumb and pointer finger. As I stroked her thin arm,  Colleen said, “She’ll lift the corners of her mouth when anyone mentions Winnie the Pooh.’” I found myself smiling, too.  Colleen had taken time off from her job to care for her granddaughter. This youthful grandma declared to me, “It’s an honor to serve her.” I glanced around at the great room, almost as busy as Pooh’s Hundred Acre Woods. Tiggers and toys spilled over the white sofas and the floors. Medications and bottles and cleansers covered the kitchen countertops. Unopened diaper packages sat beside us. Of course, the house was as sterile as could be, but the task of clearing out clutter yielded to intense, nursing needs. Still, in the midst of awful challenges, Angel Face thrives. Two years before, my family moved 400 miles west to live catty-corner from this pretty girl. Suddenly, five months later, my own special child, Peter had a massive seizure. The shock of that November afternoon gave no hint of the grace to come. My son was almost home, riding on the special-needs school bus. Outside the front door Bill Cook and Toby Bostwick, construction men whom Peter befriended, were on ladders painting replaced upper molding.  I worked at my computer, listening for the sounds of key fumbles in the lock and Peter’s routine greeting, “Hi, mom! I’m back!” That afternoon, however, I heard a frantic knock which my daughter Jessica answered. Noting a strange voice other than Peter’s, I hurried to the balcony at our front entry. Between the two ladders stood Sam, Peter’s bus aide.  “Something is wrong with Peter,” he yelled to me. “He’s talking but he’s not making sense.” “Oh, no,” Jessica and I cried in chilling unison. “He can’t be having seizures.” Peter had epilepsy from ages three to eleven, but he’d been seizure-free for six tranquil years.  The Midwestern sidewalks were frozen, so I shoved my bare feet into socks and shoes. Toby and Bill rushed to my son’s side. Judy, the bus driver, had already contacted the school nurse and emergency services who arrived at the scene as I hurried to my teen’s side. His eyes were open, yet unfocused as he sat slumped by his aide. Bill and Toby kept asking Peter if he knew their names. I caressed his unresponsive face, while tears spilled down my own. As the men lifted my teen from the bus, the paramedics asked me what hospital to take him to. I was so clueless. I didn’t know the name of any local hospital. I racked my mind as I stared out the bus windows. Due to a prolonged, cold weather front, most folks in our subdivision kept to their cars or homes. But, on that oddly mild day, I caught sight of my neighbor setting up lawn Christmas decorations with her dad. I ran out of the bus, yelling for help. Nicole hugged me, then informed me about Sycamore Hospital, the best and closest emergency room. Then we hugged again. Because we went to that particular hospital’s ER, my son went under the care of a friendly Dr. Simkins. Nicole didn’t know this doctor as he was a recent transfer to the area. He was also the new Medical Director of the Neurophysiology and Epilepsy Center. Peter jokes and smiles when he visits Dr. Simkins. We couldn’t ask for a better doctor-patient relationship. Nor would we ask for a better neighbor, who understands the challenges and the honor my family has with raising a special child. For me, luck is a four-letter word that explains little. But it is the five letter word Grace -God’s Radical Acts of Compassion Everywhere- that explains every blessed connection in our circumstances. Angel Face and my son reveal

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The Magic Boat

Autism has brought the greatest sense of humor to our family as well.  It is not every parent who deals with the stress of having a child with a disability as confusing and frustrating as autism.   Often, however, I consider myself one of the luckiest parents I know.  Not a day goes by that some “odd” behavior does not make me chuckle with my son Kian.  He is an extraordinary person  whose s often as having a child with autism makes you worry, wonder, and pull out your hair, I must say, iextraordinary actions bring a whole lot of joy to my otherwise ordinary life.   One occasion that comes to mind when I think of Kian’s sense of humor is one that also involves a combination of his love of music and his love of swimming.  On a busy afternoon, while my youngest son was napping, and my husband was working, I was doing dishes, washing laundry and trying to get dinner ready.  So, I decided to let Kian play in his playroom while I called to him from the kitchen.  He was happily singing a favorite song of his that he learned from the movie “Puff the Magic Dragon.”  I am not sure what the exact title of the song is but our family has dubbed the song, “The Magic Boat.”  Kian sang it beautifully all day and night and occasionally I still hear him singing it six years later.   Although he was just a few feet away and I was quite attentive to his very loud singing, I noticed a rather “odd” silence, followed by a lot of laughing and then a lot of splashing, coming from the playroom which coincidentally contained my washing machine.  I immediately jumped into the room and saw my four-year-old beautiful boy completely naked, splashing around in the washing machine and singing, “Let’s Cross the Ocean in a Magic Boat and Sail Across the water.”  A Kodak moment that only I got to enjoy firsthand.  I laughed and laughed and still laugh as I recall it now.   Not only does the memory of this moment in my life bring back joy and laughter, it also reminds me of a philosophy I have learned from Kian.  It helps me get through the rough times that we all share when our child struggles.  If we think of this disorder and start feeling down, we have to remember, the only way to get through to the other side without drowning is to splash around and sing and ride the magic boat to a magical place where our child likes to visit.  A place that autism does not take away from anyone, not the child, not his siblings, not even you. 

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Terror at the Baseball Game!

Several summers ago four friends journeyed to Montreal for an Expos game at Olympic stadium (before this baseball team became the Washington Nationals). The crowd was scarce, and we didn’t bother to get tickets in advance, but instead, took the best seats that were available. Even though it was the day of the game, we secured seats four rows behind home plate. Four rows! We couldn’t believe it. None of us had ever sat that close, and although the seats were not handicapped accessible, my friend Jim carried me down. We settled in, and sat next to the guy operating the radar gun for the Montreal pitcher. Our luck couldn’t get any better. Man, was I going to pick this guy’s brain on baseball. Little did I know, that by the fourth inning, everything was going to change? I laugh about this now, but that night, it was not so funny. My name is Pat; I am 33 and live with Becker Muscular Dystrophy. A disease with no cure, certain proteins in my muscle cells slowly leak out causing a progressive weakness. This is what the doctors tell me. From my mind, I walked until I was 30, and now use a chair full-time. Whatever happens will happen, there is no stopping it, and this is why I live life to the fullest. Everyday is a gift, and since I am a teacher (with summers off), I road-trip whenever I can. Anything can and will happen. And, on a warm August night at a Montreal baseball game, it sure did. O.K. Here goes. Call it bathroom humor, but not the kind you are used to. Somewhere during the bottom of the third inning, I told Jim that I had to visit the men’s room. The look on my face must have told him that this needed to happen now. Mike and Joe (my other pals at the game) went to look for my stashed wheelchair tucked neatly away with the usher in our section, while Jim piggybacked me up the stairs. (I have the best friends in the World). We got to the bathroom; I quickly rolled in, and transferred over to the toilet. I was only thinking that I had to go right then, and did not pay much attention to the fact that the toilet was really, really, low to the ground. Until I was sitting on it. Dismissing the thought, I took care of my immediate business while Jim told me he would be back in a few minutes to wheel me back to our seats. After a beat, I began to realize that there was no way I was getting off this can under my own power. At a friend’s house, this is always a laugh, but in a public stadium, this brought about different questions. How would I get dressed? How would I get over to the chair? How could I push off with my legs on a toilet so low? Why is this happening? How can I put Jim through the trouble of having to come in here? Wait, he can’t come in, since the door is latched. O.K. calm down Pat. First, reach over and un-latch the door. Uh-oh, no good. Can’t reach the door while sitting on the bowl. Another design flaw. I began to sweat. A man came in to the bathroom with his young son, and I had this image of Jim trying to bust in to help me while this man figured he must be some pervert…. What to do! I had been in precarious places before, but this was new. Such is life when you have a chronic illness, you have two choices: either break down and be defeated, or figure a way to deal. In my case, it is always the second choice, and this is what makes me laugh, as the solution is usually humorous and not anywhere near middle of the road.  I quickly scurried and bounced left to right and pulled up my shorts. I almost completely fell off the throne twice, but I was dressed at least. I waited. Time passed. I heard the crowd cheer and remembered I was at a baseball game. I was glad that Montreal did not draw millions of fans each night, because the men’s room was quiet, and clean. (Side note: I live near Boston, and the men’s rooms at Fenway Park are never clean..). Anyway, Jim returned and I said something like: “Thank God you are back.” He laughed, and I told him I was dressed, still on the toilet, and unable to reach the door to unlock it to let him into the stall. Silence. Then he laughed again. Not really thinking, he climbed up on the bowl in the neighboring stall and looked in at me.  We brainstormed, and both agreed that even though he was my best friend, Jim was NOT crawling under the door. Clean or not clean, that was too gross. Looking around the bathroom, Jim grabbed a big, gray trash barrel and pushed it to the locked door of the stall I was stuck in. He tried to climb up and reach in to unlatch the door, but as his arm came over the top, the barrel collapsed and he fell slowly. Now we were both laughing, as the barrel made funny deflating noises. He tried again, with the same result. Outside the crowd roared.  “Thanks for making me miss the game man.” Jim quipped. “Dude, it’s not the Red Sox.” I responded. Still stuck, I had an idea. If I took the removable arm off the chair, I could swing the metal arm at the latch and unlock it. I shared this with Jim, and went for it. Since my muscles are weak, the metal arm was heavy for me, and I had to move my arm back and forth like someone about to aim a skee-ball up the chute. Swing and a miss, swing and a miss

Autism Awareness. Autism Today Foundation. Stories.
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Our Little Angel

Our Angel: Skylar Rianna This story is about my daughter Skylar. While other kids her age are devouring ice cream cones, Skylar gets her food through a tube. While others are running and jumping, Skylar cannot walk or even crawl. And though most 5-year-olds talk nonstop, the best Skylar can do is babble and coo. She was diagnosed with epilepsy at three weeks old. For all we know she could have been having them sooner. It started when we just thought she was jumpy, but her quick jerks were becoming more frequent. We took her to the ER and spent about eight hours there before they found her a room. She spent about two weeks here having numerous tests done. They sent her home on phenobarbital. She seemed to be doing okay for about a week and then her seizures started getting bad. We took her back to the ER and she spent another week there. The neurologist came in to talk with us and told us she didn’t know what else to do and was going to have Skylar transferred to another hospital. Skylar spent about two and a half weeks at this other hospital. They ran more tests, did biopsies, and put her on more medication. The neurologist we have there is great. He has always been so honest with us and has never given up on our Skylar. He knows that he gets frustrated because Skylar seizures have been so difficult.  So far we have found nothing to control her seizures. We have tried all the seizure medications available and are now re-trying them. She has also been on ACTH four times. Skylar has anywhere from three to fifteen seizures a day and that doesn’t include all the jerking she does. Skylar is now five years old. On top of having seizures(tonic-clonic, complex partial, and epileptic spasms); Skylar has scoliosis, cerebral palsy, hypotonia, severe visual impairment(they say she is legally blind), strabismus, and severe developmental delays. Skylar is completely dependent on others. She is tube-fed; she can’t sit, walk, crawl, or talk. She does roll around though and that is how she gets around on her own. She also babbles. This has affected the whole family. We have a fifteen yr. old son and three-year-old daughter. We no longer go on vacations and rarely take short trips. We keep pretty isolated. I quit my job when Skylar was six months old. She had just started being tube fed and we didn’t feel comfortable taking her to the sitters she also had all these doctor appointments and I was missing a lot of work. If my husband or I go out it is one or the other. We don’t go out without the kids together because it is so hard getting a babysitter. So my husband and I don’t spend any time alone. My other two kids don’t go out much either. Money is always pretty short and we only have one vehicle. Stress is always a major factor in our household. We stick together though. No matter how bad it gets and how mad we get at each other, we get through. Depression is also something that you go through, you just can’t let it beat you. I think Skylar’s greatest challenge is fighting these seizures. She has anywhere from three to fifteen a day. She is such a fighter. She just keeps going and fighting. She’s very strong-willed. The epilepsy foundation is important because we are hoping one day they will find the cure. Skylar has been on all the seizure medicines that we are now retrying and she has been on ACTH four times now. The epilepsy foundation also provides you with a support group that knows what you’re going through. Some people don’t understand and it gets frustrating. You have people who just stare or say stupid things and you have people who are just ignorant. You go through bouts of depression and the whys. There are no answers but you keep asking. If more people read stuff about epilepsy they would have a better knowledge of what it is about. What inspires me most about Skylar is her will. For as much as she has been through and is still going through she just keeps on smiling. She is the most courageous little girl I know and such a fighter. She is the most remarkable child for everything she goes through. She is the gift god sent to us. He knew Skylar had a broken wing and that we would love her with everything we have and take care of her. Skylar gives so much love; you just look at her and your heart is lost. She is our Angel and Skylar is who I admire the most. Not everyone finds the right medicine. There are constantly tests being done and they can’t be done without funding. One day they will hopefully find the cure to help the rest of the ones who can’t find a medicine that works right now. The epilepsy foundation provides support and information that helps a lot of people. What if you or someone you loved had epilepsy? You’d want to do anything you could to help. So if you have any extra and would like to donate to something worthwhile, why not? We all thank you for everything you do to try to help find a cure.

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