So it is now January 1st, 2012, and it’s my day of reflecting on last year, and pondering my hopes for the new year. I reflect on the how I can make each year better, and especially how I can make things better for Ryan.

In 2010 I’d  made a decision to move Ryan to Texas, so he could see his Father more often (he had gone many months without seeing him), but  as 2011 began, it became apparent it was going to be a very difficult, and harsh year. Do to tough circumstances we had to move once again (our 3rd time in a year), and since I had nowhere else to go, I had to move Ryan and I into the projects (in the ghetto)  for a temporary move until my tax refund came in. We moved into a tiny apartment, in a small town in Central Florida. We stuck out like sore thumbs, and Ryan disliked the apartment immediately, because it was very small and we had to sleep on a couch together. I told him it was only for a short time, and tried to help him adjust.

I took him outside every morning after breakfast, so he could ride his big wheel. It got the attention of a couple of little boys that were neighbors, and they started coming outside in the mornings too. Their Mom’s quickly realized I was keeping an eye on all of them, and soon they started talking to me. I made friends with  them and their children, and we spent everyday watching them play, walking them to the park, and answering lots of questions about me, and Ryan. They were curious about Ryan (he was so different from them), and then one of the older brothers finally asked me if Ryan was “touched”. I knew this old fashioned term, so I gently explained what autism was, and that Ryan was younger in his mind than his real age. He understood that, and from that moment on, every little boy that Ryan played with, banded around him and watched out for him.Ryan had a daily play group for the very first time, and they had his back.

What originally was supposed to be 2 months, stretched out to 6 months. It was a very frustrating time, and yet we both learned many new and important lessons. I learned what poor people really go through, everyday, and how they make do with what little they have. I learned  how to make friends with anybody, under extreme conditions. I cared about them and that’s what mattered. They made my life bearable. They shared, stretching what they had, and made me laugh on my toughest days. I think I taught them a few things too…like, there are people you can trust even when your culture says you can’t. Plus, I gave cooking lessons to the teenagers, supervised the younger ones, and babysat when I was needed.

Ryan learned to play with more than one child at a time. He learned how to share, and take turns, and also, most importantly, that he could have fun with other kids. I certainly would never recommend this approach to teaching an Autistic child the many social lessons he learned in those six months, but it changed him faster than any other social therapy he’d ever had..We had a routine and a life there, which taught Ryan, that even in the worst conditions, you can rely on life being pretty normal if you make it that way. He made a lot of progress in spite of the challenges we faced those first 6 months of the year.

I started preparing him for our move to Texas, and even though he was excited about getting a nicer place, he was sad to say goodbye to his friends, and I was too. I spent weeks, talking about Texas, our new home, and our new plans. Finally it was time to leave. It was a very emotional morning when we left, with lots of hugging and tears, and thank yous to the many neighbors that had become friends. It was one of the toughest times of my life, but I will never forget the warm people that reached out to us while we were there!

The trip to Texas was long, but exciting. We saw our first Texas Longhorns, enjoyed sweeping wide vistas with beautiful ranches, and lots of wide open spaces. We moved to a city with the largest Army base in the US, and had to learn our way around, but once Ryan and I got unpacked into our new home, we could relax and let our guards down for the first time in 6 months. It felt so good! We have spent the second half of 2011 adjusting to a new school, new neighbors, and being far away from our whole family. That has been hard. Ryan misses his sisters, but he never talks about moving back to Florida to live, only going back to visit and swim. Lol.

We made it through 2011, and I was able to make things better for Ryan, and he did make progress, in spite of one of the greatest trials of my life. This year, 2012, will be one of stability. We will have the same home, school, and quiet life we yearned for last year. We will enjoy being in one spot, and Ryan will make progress, grow, and thrive! We love our new home and feel very comfortable already. Thank you to our family and friends we left behind, and thank you Texas for what lies ahead of us!

These Are A Few Of My Favorite Things: On Ryan’s Lighter Side…

           So, all of you know that Ryan has been a challenge, and we’ve had our share of difficult times, but maybe it’s time for me to tell you about his lighter side…the side that I call “elfish”.

Ryan has a magical smile. A smile that lights up like a halogen bulb on a moonless night. One second it’s dark, the next it’s blindingly bright. The kind of smile that in the old days was called a “moviestar” smile. He smiles most of the time, as he goes about his day. Sometimes they are little smiles, like when he finds just the right spot for a truck that he’s placing in a straight line. Fleeting smiles like when he taste something that he really likes, and then gets down to eating it. But it’s the big smiles that are accompinied by his unbelievable laugh, that light up the darkness and I feel his magic.

It is so unexpected to have a “special” child with a laugh so genuine, and infectious that it makes your own laughter bubble up from deep inside yourself, unbidden, and uncheckable. It is one of his greatest gifts, his ability to transport me in a split second to the age of 4, when I could laugh at little things and have the sensation of laughter run through my whole body. It is infectious too. I’m not the only one that his laugh can effect, there are many others… family members, children, strangers in parks, and swimming pools will all laugh when he does. When he laughs hard, even our dog (Bear) jumps up and runs around in excitement, shaking his big head and bouncing with joy. I wish his laugh could be bottled, it would cure a lot of wrongs in this sad world.

Ryan is also funny. He is sometimes funny, in a stomach shaking, laugh til I choke, kind of way.  Ryan is prone to slapstick moments that would make Jerry Lewis proud. I once watched him jump up and down on the couch (while eating a piece of celery no less) throw a ball for Bear, put himself into a headstand to watch Bear run upside down, and scream with laughter. I couldn’t keep from laughing as I told him to stop jumping on the couch! He has a mischievious sense of humor too, that can strike anytime and anywhere. One of his favorite “jokes”, involves strangers when we shop. He waits until he knows I’m distracted, walking down an aisle looking for something, and will lunge out at any stranger within reach, grab their arm and scream HI at the top of his lungs, and laugh hysterically when they jump. He doesn’t let go right away, and sure enough these strangers will laugh with him. I have to fight hard to control my face, not smile or laugh, to admonish him that “it’s nots nice to scare people!” Then there are those moments because he is 4, when we are in a resturant, he’ll smile that big smile, laugh, and with a mischievious gleem in his eye announce at the top of his lungs that he has just passed gas, and giggle until he can hardly breath. Oh my, this boy…

He lives life for all it’s worth, every moment, and is larger than life himself.  He is completely oblivious to social pressure, and does not give a flip what anybody thinks about him. This amazing, unique, funny, “elfish” special child, makes me thankful that I had him, every single day. He is the darkness sometimes, but more often than not, he is the light, and brightness, and magic in my life. I would not have him “be” any other way. Not neuro-typical, not un-Autistic, not un-developementally delayed, because then he would “un-be” Ryan. He is who he is, and even with his struggles, he is true to himself. He is Ryan, and I am his lucky, blessed, sidekick, fan, and audience.

Peace be to you all.

Beth

An Autistie with an Aussie (Ryan and Bear)

An Autistie with an Aussie (Ryan and Bear)

I’ve mentioned Ryan’s ear surgery at nine months as a marker for his first display of Autistic symptoms, mainly due to acute reactions to sound , but his anger and anxiety levels were barely noticeable. He was more likely to be indifferent or quiet. Too quiet. Compared to my youngest daughter who had ADHD, he was the complete opposite- careful, deliberate, and persistent. Yet, over the next year (his second year) I started seeing escalating episodes of anxiety. He would startle, cry, and run when he heard unfamiliar noises. He had crying jags if he fell down, and it took months for him to walk with any confidence. He had a very low pain threshold, screaming and crying with, what I thought, were  just regular bumps that other kids would  barely notice. I believed Ryan was just exhibiting a more “sensitive” personality than other kids. He fit in with my side of the family, which is heavily populated with high and genius IQs, writers, poets, and musicians.  We all have the proverbial innate “high strung” personalities that come from those genes. I figured he would “toughen” up once he  gained  experience by playing with other children, growing into a more mature toddler. He would naturally get a tougher skin. This scenario might have come true, if not for an event that  changed Ryan almost overnight… he came down with a virus.

He caught his first major stomach flu in July (at 16 months old) of 2008, and we were descended into six days and nights of hell on Earth!  He vomited, had diarrhea, and burned up with fever continuously, until he lost every bit of his adorable baby fat, and was weak and exhausted. I had never heard of a stomach flu that lasted more than 48 hours, so after repeated phone calls to his pediatrician, I finally got a call back from the doctor who begged me not to bring Ryan into his office (as over half of his practice had this bug), and if Ryan became too dehydrated to take him to the ER, but he seriously doubted the ER could help much, because  so many  children in the town were sick ,it was jammed full! The wait would be horrible and uncomfortable for Ryan so he advised me to stay home.  I was on my own, so following the doctors directions, I gave Ryan Pedia-light and chicken broth in tiny sips, every hour (while he continuously whimpered and got weaker) day after day, but  successfully kept him from getting dehydrated. On the seventh day he finally held down a few ounces of broth, but took 3 more days to get an appetite for solid food. I will never forget those 10 days, as I mark that flu as the beginning of Ryan’s regression, and the beginning of his multiple Autistic-like symptoms.

He was never the same, and I watched helplessly as over the next seven months  he became possessed by anger, and terror.I couldn’t  comfort him, only his pacifier worked (God help me if I couldn’t find one!), and he started resisting me if I picked him up while he was upset.  Those first episodes of wriggling out of my arms while crying, marked the beginning of what would become the violent arm flailing,  kicking, tortured, screaming  incidents that escalated in intensity and frequency. He regressed until he was barely making ten sounds, couldn’t point, couldn’t communicate, and was having up to fifteen “tantrums” a day. Everyone kept telling me he was just going into his “terrible twos”, and he was only having tantrums, but I intuitively knew some of them were not tantrums,  because they were something very different from any tantrum I’d ever seen.

I have now come full circle with the back-story, preceding Ryan’s first appointment in New York with the pediatrician that diagnosed him with High Functioning Autism. What I need to mention now, is the raw emotional state I was in at that first appointment. I was feeling a lot of hurt from opinions and accusations by family members and friends, as they gave their take on what was happening with Ryan.  I heard them all…” I was too old, therefore too lenient, I was giving in to his manipulation, I was spoiling him, I was too soft, I wasn’t disciplining ( i.e.spanking) him hard enough or often enough, I was feeding him wrong” etc..  By the end of those seven months  I was questioning myself (and blaming myself too), but deep down I knew that something was wrong with Ryan, but my message wasn’t getting through to anybody! I couldn’t express to the doctor that day, (since I hadn’t done any research on Autism, so I was unfamiliar with the word meltdown) that not all of Ryan’s tantrums were the same, and that he had different triggers. Sometimes it was transitioning, sometimes it was when he hurt himself, he had different kinds, but I had never fully realized it myself. They all sounded the same. They began with whining , then escalated to screaming and crying. I knew I’d missed my opportunity to express my reservations, when the doctor explained that I had to ignore and isolate Ryan during tantrums, even if  it was caused by hurting himself (which happened fairly often), because  paying attention to any kind of tantrum would cause them to continually get worse. I did what he, and several other specialist told me to do, and spent the next six months ignoring him as a way to deal with the tantrums, but despite the expert advice they escalated and got worse.

It all came to a head, when I moved to the Florida Keys in October of 2009 (after my oldest son deployed to Iraq), and Ryan’s tantrum’s moved into the realm of physical violence.  He had an incident so severe, he  broke his dvd player, bent a metal vent with his bare hands, and re-broke my nose trying to get out of the bedroom where he was supposed to stay until his “tantrum” was over. I had had enough! I picked him up, walked out of the bedroom, sat with him in my rocking chair, and started crying. I told him I loved him and we were going to do things differently from now on! He sighed and relaxed into me, exhausted, and fell asleep. What I  finally realized, was that Ryan had been reacting to anxiety caused by a sudden change of plans that day, and as the anxiety got worse, so did his so called “tantrum”. Then his anxiety became full blown panic, at which point  Ryan wasn’t Ryan anymore, he was a primitive, feral wild animal acting solely on blind instincts. That was not a tantrum. A tantrum is defined as an act of defiance, and manipulation, in which the child is capable of conscious thought. What I had just witnessed was exactly the opposite, a total loss of logical thought, due to horrifying anxiety that escalated to a full blown panic! He felt out of control, floundering, because he didn’t know what came next when the plan changed. What I missed at the beginning of the meltdown was his need for another plan to replace what had changed, but his reaction had been so fast and spiraled out of control so quickly I assumed he was angry. Now I understood, that although Ryan was in his terrible two’s and was having regular tantrums, he was also having “meltdowns”, defined as a loss of logical thought due to the fight or flight reflex governed by the primitive brain! It started as anxiety, and ended in panic. He had needed comfort, not discipline.

We moved forward from that day on. It was the last time I ever ignored my gut instinct, and did what I thought was wrong. I learned to watch for two factors before deciding how to handle an episode.  Sometimes, I’m alerted to anxiety by his repeating the same thing over and over. Other times, he will start asking “what if” questions that start to escalate, if I’m not catching on to what he is anxious about his voice will get higher, and louder followed by fidgeting. Other times if he’s suddenly startled or scared, he freezes then takes off running, and goes into full blown meltdown, running with no thought to his safety. If he’s  angry, (but can be distracted) then he’s heading for a  tantrum, which happens much less frequently as I’ve learned to insist that he not cry for what he wants.

It has been 2 years since that fateful day in the Keys when I took control of Ryan’s meltdowns AND tantrums (for that was the missing key all along,  to help with both!), and in that time he learned how to talk, he started school, began playing with other children, and learned how to pretend.  He had come a long, long way, but he was still sick all the time, and I just couldn’t shake the feeling that his diagnosis was still “off”. That just like the difference between his meltdowns, and tantrums, there is an underlying issue with his health that is still being missed. An issue that is continuing today, even with his gluten-free diet, that will take more testing, and trial and error before we really get to the root of what has happened to Ryan since that fateful stomach flu.

For now dear friends, I apologize for the length of this post, and hope that it held information that helped with your own child. My next post will address several avenues of new research (DNA, environmental, immunological, diet etc),  and the up coming testing Ryan will be going through to answer his medical issues. Until then I bid you peace, and hugs for your children.

Best Regards,

Beth

Ryan on the road at age 2Ryan on the road at age 2.

It is the day after Ryan’s all important annual IEP, and his Texas, ARD meeting. My stomach and nerves have recovered from the days long anxiety and dread that I inevitably suffer before one of these meetings! I gird my loins for battle, connect with my inner Mother bear spirit, and always, always expect the worse! Then when it is finally time to sit down at the conference table, surrounded by “experts”, teachers, and school administrators, I listen as they describe their versions of my son Ryan. I have a love/hate relationship with this process, as it is necessary to Ryan’s education, his life skills, plus it adds pieces to his Autism “puzzle” so we can see where he stands and at what level.  It is also hard to sit, and face  reality. This year I was expecting the worst, that the school would deny him his Special Ed label, and the services he so badly needs because he has come so far. I was very wrong to be worried about his being denied!

The school diagnostician is not used to working with children as young as Ryan, and she was big enough to admit it, but she was able to test Ryan, and had his final test results, plus the totals on each of the reports all of us had filled out. She reported that Ryan is under the “norm” in all areas tested, but especially in the two areas concerning cognitive thinking, and social skills.  His delay is serious. They ranked him at 30 months old, and my heart sank! That is lower than his last testing in February of this year, which was 1 year 3months behind in cognitive thinking, and now that delay is 25 months (or 2 years, 6 months) behind  his real age of 4 years 7 months. How is Ryan going backwards, when he is making such huge improvements in so many areas? I had so many thoughts run through my mind, it was hard to grasp what they were telling me!  I started ticking off his improvements (being careful not to sound defensive), his speaking vocabulary has grown exponentially (especially since he started his gluten-free diet), his meltdowns have become rarer,  his anxiety has fallen, he has finally made his first friend, and he’s become more affectionate and connected. I just could not accept their results without asking, how can this be?

The answer has to do with his academic level as he approaches Kindergarten next year. He is falling behind faster due to the number of skills he needs to start Kindergarten. His teacher also clarified that Texas has higher standards academically than Florida, which made sense to me. So, I took a deep breath, and asked where do we go from here, to get Ryan into Kindergarten next year? The answer is a multi-level approach. His fine motor skills are first and foremost of importance, as he learns to trace, then write his first name. Ironically, his teacher said they had never seen Ryan get upset in class until they had to start sitting him down to learn writing. She said he gets frustrated very quickly, and impatient. I smiled and assured her he would try to wheedle out of it, but as he gained a little skill he would complain less. I’ve seen this avoidance  in Ryan many times, especially when he was learning something that brought on pain, like walking, because he fell, and riding his bike where he also fell. Learning to read and write will be just as painful to him, because he doesn’t like to fail i.e. fall.  His frustration is like when he couldn’t talk,  it’s a new way to communicate, so he will fight and get angry, but then ultimately start loving the new skill as he starts to succeed. I let her know he loves books, treats them as his most precious belongings, and the more she can tie in the hard work of learning how to write with learning how to read, the more likely he’ll cooperate.

He has many long months of hard work ahead of him, as he not only has to learn academics, but he will also be expected to learn more social skills as well. He is slowly starting to engage with his classmates, but more often then not it’s because they have something he wants. His teacher said, he loves to be line leader, and class helper, but when it comes time to turn over that power he resist, and becomes angry. Of course he does!  He is a powerful leader, and likes to be in control all the time. One of  the central themes of Autism is egocentric behavior, and Ryan will even resort to sneaking  to get his way amongst his peers. They will be working with him to share more gracefully, and reciprocate with the other children, in other words, they are going to teach him to be fair.

It will be interesting to see if he becomes more rounded socially, or is this going to become the battleground when “dark Ryan” shows up? Will their demanding more social skills from Ryan, be the sore spot that starts the first meltdowns they’ll witness at this school? I certainly hope not! I dread those notes from his teachers describing a meltdown that has caused physical injury to them,  he’s had a few of those. I would like to think we have put those behind us for good, but I did discuss the scenario for a meltdown and what signs to watch for. The Assistant Principal took notes at this point in the meeting, and I assured her that in the event of a meltdown, they only needed to stay away from him to keep from getting hurt. In the past, the teachers that tried to restrain him were the ones that got hurt. His teacher and I agreed upon this tactic from the very first week of school. I explained the difference between a meltdown and a tantrum, as they are two very different, but similar looking events. One is caused by anxiety, and an escalation of fear and confusion due to certain triggers. The other is a form of manipulation for Ryan to get his way. I will be describing these two very different forms of violent behavior in my next post, as being able to tell them apart is crucial to understanding how to approach, and then stop  it, before someone gets hurt.

We finished the IEP meeting, with plans over the next year to address Ryan’s delays, and I felt relief. I felt certain that he was in the right school, with the right teachers, who were going to work very hard to get him ready for next year. I can’t ask for much more than that, and I was happy for the first time in a week as I left that conference room. We have a plan.

Until next post, I hope all of you parents of children on the spectrum  had effective, helpful IEPs. That you left your meetings feeling hopeful, and with a new sense of purpose for the coming year.

Best Regards,

Beth

Ryan being anxious
  Ryan being anxious.      

The picture posted with today’s blog, was Ryan exhibiting anxiety while at an Army barbecue on Lake Ontario when he was 2 years old. I know… it hurts our hearts to see such a little child, his hands twisting, and his eyes diverted, being so overwhelmed. It is not easy see a child in distress like this, but I posted it to illustrate “Anxious Ryan”,who was part of our everyday lives for years.

Ryan could get anxious about many, many things during a normal day. Loud noises, unexpected changes in schedule, bad weather, a missing toy (worst!), holidays, parties and many other situations; they were all opportunities for his anxiety to rise and overwhelm him.  His hearing was overly sensitive, and noise in general caused anxiety. He developed unusual fears. For example- Walmart bathrooms. Their toilets are automated, and are extremely powerful which causes them to be decibels louder than any other toilet. He would start to cry if I even mentioned we had to use their restroom. To cope he learned to cover his ears, but eventually every public bathroom became suspect, so he would enter them, use them, and leave them with his ears covered. Today he is much, much less anxious. I attribute the improvements to his overall anxiety level, and easing of his emotional turmoil to his Gluten-Free diet. Ryan has improved in so many areas, I feel blessed that the scientific community has singled out this one protein as a contributing factor (one of many factors) to his misery!

For those of you unfamiliar with gluten, it is a protein found in wheat, barely, and rye. If a product requires thickening, yeast, moistness, chewiness, or is a baked good,  it has gluten in it. It is also the substance that causes Celiac Disease (a disease that kills the cilia of the intestines, and causes a 90% chance of intestinal cancer in it’s sufferers), and is now (according to mitochondrial research) a suspect in aggravating symptoms in ADHD, and Autism. The mechanism by which the gluten causes symptoms in the brain has to do with the digestive (Kreb) cycle. If the child can not tolerate (or digest fully) gluten, the brain becomes bathed in neuro-toxins caused by inflammation. It is these toxins that cause the symptoms and cognitive delays, and aggravate a brain that is already structurally different (missing normal organization) from a normal brain.  The more I read about the overall physical symptoms gluten sensitivity causes, the more I recognize Ryan’s alter egos… “the Anxious, Angry, and Dark Ryan”, along with the  accompanying physical discomforts of “stomachache, acid indigestion, frequent diarrhea, and headaches Ryan”. Going gluten-free eased most of his persistent symptoms, but to remove gluten from his diet, required a radical re-thinking and re-organization of food ingredients in my kitchen, because wheat is everywhere and in almost everything!

I have been a baker for over 20 years, and once was a private baker with customers all over Miami. Customers ordered breads and pastries from me weekly, and also gift baskets during the holidays. It was very successful, but the long hours while raising four children became too much, forcing me to close.  So, the idea of not using gluten was completely alien and unbelievable to me! How in the world would I bake without wheat flour?  What kind of pasta isn’t durham wheat or semolina? What about his beloved “goldfish” and “Cheese-Its” crackers?  How was I going to replace his favorite quick meals- pot pies (which he loved so much he”d eat 2 at one sitting), pizza, and  Japanese ramen noodles?  “Oh boy”, I thought this isn’t going to be easy (as I imagined the melt downs ahead of me, as Ryan was denied what he loved), and I realized I would have to go gluten-free too. Well, what is my motto? For Ryan…Always! So, I started my research online, in the library, and at the bookstore. I read and studied the gluten-free diet (which is actually a lifestyle) and located stores that provided the ingredients I needed.

I was relieved when I discovered that Whole Foods Market (in Austin 6o miles away) offered many different GF (gluten free) products- from frozen breads, to fresh baked muffins, cereals, snacks, bulk flours, and even GF gravy mixes. Unfortunately these products are very expensive! A loaf of bread is over $6.00, a small box of brownies $7.00, a box of mac and cheese $3.50! So, I bought the basic ready made foods to start switching Ryan, and began ordering flours from the excellent website- Celiac.com using their Gluten-Free Mall, to learn how to bake and cook the GF way. The secret to this diet is to replace one flour (wheat) with a mixture of several gluten-free flours, then premixing them into a ready to use baking mix like Bisquick. It is this base that I use for everything from pizza dough, to  chocolate chip cookies. Once I got over my apprehension about replacing wheat flour, I discovered a whole new world of flours- rice, corn, sorghum, potato, chickpea, almond, buckwheat, teff, and the list goes on!  Once I mixed up my first batch of baking mix, I felt confident I could do this. I found GF products, especially pastas, at Walmart so Ryan could have, mac and cheese, ramen noodle bowls, and spaghetti too. I just have to make the sauces that go over these pastas, and viola, he doesn’t realize a switch has been made.

I was surprised and very pleased (as was our household) with the effects the new gluten-free diet had on Ryan. Within just a few days, his stomachaches and diarrhea started to subside. His emotional instability, and high anxiety  slowly started to level out. He became less toddler like (babyish), and more like a four year old. He was quieter, spending less time screaming, or whining. He reacted more in proportion to what difficulties might arise, instead of having a tantrum over something trivial, he would just click his tongue, or sigh. Much, much better! His ability to think things through improved, so he was less compulsive, and seemed more mature. I asked others who had spent a lot of time with Ryan, if they noticed anything different, and the answer was a resounding yes! Has this diet cured Ryan? No, not of all his cognitive delays have suddenly improved, or his fine motor skills, those will take teaching and physical therapy, but his ability to think has improved in a very short time. He is much more likely to initiate play with other children his age, get along with them  longer, and copes with their noise better. He is a much less irritable and happier child.

If I have any doubts about the positives that have occurred since Ryan became gluten-free, I become convinced all over again when a mistake is made in his diet! He regresses immediately, displaying all of his old anxious, overwhelmed, angry “selves” within hours. He wets the bed (which he hasn’t done since he was two), and reverts back to rocking, humming, repeating himself and obsessing or tantruming over and over. His reaction to a snack of “goldfish” mistakenly fed to him at school was so bad, he had to be taken to his pediatricians office, placed on allergy medicine and monitored as the reaction caused inflammation in his lungs. His doctor now believes, Ryan has “detoxed” off gluten, and therefore his reaction will be more violent each time (much like peanut allergy) he digest it. He went so far as to say he could have a seizure the next time, which scared the hell out of me! Now, I pack all of Ryan’s food, and snacks for  school everyday. He sends GF snacks to share with his classmates once a week so he doesn’t feel left out, and is starting to learn and understand he has an allergy to wheat that makes him sick.

For now, dear friends, Ryan is making headway faster than ever before, and he hardly notices his diet has changed. Perhaps that is the biggest clue to his improvement.  He’s not so overwhelmed and anxious, so he can cope, and instead of being many “Ryans”, today, he is just Ryan.

Best Regards till next time,

Beth

Ryan with toe ring

Ryan being Ryan (2 years old)

Ryan has many great qualities, even with the neurological disorder of High Functioning Autism. He is very charming, and when he was a baby we used to say-“He has charisma with a capital C!” He has beautiful eyes, which have that “look of the eagles”, a piecing look straight into your soul, that he inherited from the Cherokee side of my family. He has a movie star smile, and an infectious laugh. He is beautifully handsome, and every woman that has ever made a comment about Ryan has said, “He’s going to be a heart breaker!” These qualities are just the superficial, outward appearances of Ryan. It is his inner spirit, his innateness, what makes him who he is, that differentiates him from the “norm”, and illustrates the positives of his disorder.

What is truly great about Ryan is his constant hunger for more. He has huge amounts of mental endurance and concentration. He is tenaciously stubborn, and he always wants to win his side of an argument. These are all traits needed in the world to be successful.

He is driven, and even at the tender age of 4, he wants to be a man. He daydreams, and discusses what he wants to be when he grows up, every single day! His personal obsession (which is by definition an Autistic tendency), has always been, and continues to be, trucks! He talks about them, he collects them in every size, shape, type, and color.  He has books about them, and even collects cards (like baseball cards) at every truck stop, and is not shy about asking the cashier if they have any. He is consumed by trucks.  In our two years of traveling (the many highways of America) for up to 18 hours a day, Ryan has never tired of looking for, and at, every single truck on our side of the road, and the other side too. He believes wholeheartedly, and has planned, to become a truck driver and own a shipping company. He repeats everyday that he is going to own ten trucks, and he will be driving them! His obsession has educated me, and inspired me. I have never known much about semi-trucks, but after Ryan, I am well versed! I often remind myself, that his obsession could have been worse, I could have been bombarded with trivia about guns.

I like that he has a plan for himself when he’s a man. I also like that he has given me the perfect tool to inspire him, when he tells me he doesn’t need to go to school. I tell him, “You have to learn how to read road signs, or how will you drive your trucks?” He complains he doesn’t know math and doesn’t want to learn it. Perfect opportunity for me to pipe up and say-” How will you count all the money you are going to make by owning trucks?”, or “How will you know how much diesel (yes he knows the difference between gas and diesel fuel) you have to order for your trucks everyday?” He always thinks about it and says, “Ok I’ll go…sigh”.  I don’t worry about him being obsessed, it is an integral part of Ryan, and of his HF Autism. I like to think that he will fulfill his dreams when he becomes a man.

I am writing this piece, the day after Apple founder Steve Jobs has passed away. I am reminded of just how different his thought processes were, and how his drive for perfection, and his obsessions radically changed the entire world. It gives me hope for Ryan, that his differences from “normal” children will serve him well, and I am comforted by the long list of “unique” individuals who have also changed the world one invention at a time. High Functioning Autism can (and will) be a positive aspect of Ryan’s innate uniqueness. It is what makes Ryan, Ryan.

I leave you parents of  “unique” children, with the positives of HF Autism. In  the hope it lightens your burden, so that  instead of sadness and tragedy, you become filled with happiness and hope for your child’s future. The hope that they will be able to fulfill whatever their dreams and fantasies are, as they become men and women.

Until tomorrow…

Best Regards,

Beth

Pool Therapy
Ryan’s first pair of floaties.

Ryan’s doctor had diagnosed him with possible High Functioning Autism, with/ and/or Asperger’s Syndrome, and on the Spectrum. He filled out paperwork for us, ordering testing that would help Ryan get the social services and therapies he needed. We were very lucky to be in the state of New York, as they test early for disabilities, and then immediately begin therapies with the goal of mainstreaming  children into Kindergarten. I was upset, and filled with dread, but relieved all at once. It was a relief to put a name to the signs I had been noticing  in Ryan, especially his inability to talk. It wasn’t a case of “boys talk later than girls”, or “he’s still too young”.  Again, my other four children had no delays in talking, and enjoyed not only interacting with me, but had long of dialogs with each other. There was no back and forth with Ryan, he could not converse at all. With my feet firmly planted on the path to discovery, I had a map to help Ryan find his was out of his isolated world. The experts would examine him, and we would have a plan.

His doctor gave me advice on how to handle Ryan’s tantrums, with a grave warning that if I didn’t start ignoring  (no intervening at all) his melt downs, they would only get longer and more frequent. My heart almost stopped! It was already a nightmare, how much worse could it get? As the months passed, I found out just how much worse they could get. Ryan became physically violent- kicking, biting, hitting, and throwing objects at me as he raged. He developed super normal strength, almost as strong as an adult, with incredible endurance. Each doctor’s visit became a test of wills and strength for the nurses, so when he had his booster shots at two, it took three women to hold him down, and we were all sweating by the time it was over. I named these tantrums “seizures with sound”, as I watched my little boy go farther and farther away, for longer and longer periods. When they were over, he acted like nothing had happened, and didn’t remember them. It was heart breaking and scary!

I have been asked how I handled all the stress associated with having a child that was angry so often. I’d smile and say- “He is an amazing, unique, and very lovable little boy when he isn’t raging.” He was, and still is, a beautiful child, with many good qualities. He eats everything ( is a foodie) from squid to mescaline salad, to strange fruits. He will eat anything, much to the fascination of strangers. He sleeps like the dead, and surprisingly was fully potty trained at 2 years old. He is clean too. He wants and keeps his room in order, and always has. His laugh is amazing, and his smile is precious. He is very smart, and even when he couldn’t talk he would try very hard to follow directions. It is his best qualities that I keep in mind when he is having a bad day, plus someone has to stay calm, or we would both descend into chaos!

We had a group of specialist come to our home ( a Psychologist, an Occupational Therapist, a Speech Therapist and a Social worker familiar with Autism) to perform test on Ryan. His Social worker was the only one to witness one of Ryan’s melt downs. It wasn’t a very long one, lasting about 30 minutes, or violent, but she was impressed  at how persistent he was. She couldn’t believe he could concentrate so long on an obsessive urge to play with the vacuum cleaner. I just sadly shook my head and said “if you only knew”!

We received the results in two months with all of the recommendations for his treatment, and sat down with his Doctor to go over them. All of them advised a school or play group environment immediately to start his social skills with children his own age. We were living with my oldest son (who is in the Army), and had access to the Ft.Drum library, and parks. I had been trying to get Ryan to play during library time, and scheduled play dates with Army families, but Ryan either ignored the other children, or worse screamed in their faces if they got to close to him. Not the best way to make friends. We didn’t have any success that first year (at age 2) at getting Ryan to play with other children. The closest I came to helping him make friends happened after we moved from New York (when my oldest son deployed to Iraq), to the Florida Keys.

We moved to Islamorada across the street from our family resort- The Islander. The huge children’s swimming pool finally succeeded in making a dent in Ryan’s anti-social behavior. We went to the pool every single day, for several reasons. I had moved to an island surrounded by water with a child that had absolutely no normal fear of water, or understanding that he couldn’t swim (he had leaped into the deep end of a pool at 14 months), and I was truly scared he would drown. The pool offered the chance to meet children everyday (vacationers and locals), and helped Ryan burn off energy. He loved it, and even now swims several times a week.

I signed Ryan up with the Monroe County social services, and they quickly scheduled Ryan for more testing and therapy. He couldn’t start school until his 3rd birthday, but they signed him up through Miami Children’s Hospital for his speech therapy. I didn’t have to drive him the 123 miles round trip, the therapist was assigned from the Keys and she came to our house. She got on the floor with him, and made eye contact, and from that very first meeting she was able to entice a few words out of Ryan’s mouth, some were barely recognizable, but he said them! She gave me a list of things to try to strengthen the muscles in his mouth and connect the neuron pathways to his brain… a vibrating toothbrush was first on the list to “wake up” the nerves in his mouth, and to move his tongue around more. Peanut butter on a small spoon, and breathing exercises to help him control his breath as he learned to talk. Over the next three months he made amazing progress, picking up several words a week, and I learned the power of rewarding him with things he had never seen before.  He learned to ask for what he wanted by name.

The closest Pre-K was 15 miles away,  over several bridges, but the Superintendent hired a certified Autism teacher (a first for Plantation Key School) and on the day of his 3rd birthday, Ryan started school. His big sister and I took him inside (after pictures of course), and I cried as he took his teachers hand, and walked away without looking back. It had been a very long, tough journey, but I knew deep down that his walking down that hall would be the start of his recovery. He may never be completely fixed, or healed, or normal, but as long as he goes to school, he will improve. He spoke his first 3 word sentence seven months after starting school.  He was three and a half years old,  almost two years from the day his Doctor told us he was on the Spectrum of Autism. Talking  came gradually, but constantly improved. And now? Ryan talks so much, he barely takes a breath. It’s as if the wall came down, and the flood of words that had been held back, came gushing out.

We left the beautiful Keys and moved to Texas after my oldest son was transferred. It has been a good move, with his new school offering all of his therapies in class, and I found a supportive pediatrician who’s helping with Ryan’s diet change (to gluten-free),  to try and keep him off medication for awhile longer. He has been gluten free now for several months and I see many improvements in his temperament. He is due for another battery of test to gauge his progress, and also to finally answer the Aspergers question. Tomorrow, I will write more about how a gluten-free diet has been a blessing, and why the Aspergers diagnosis could  loom ahead for Ryan.

Until then dear parents, keep heart, be determined, and advocate for not only your child, but all the other Austistic children out there. After all, they will be your child’s classmates, and friends as they grow up together!

Best Regards,

Beth

Ryan at the Islander, poolside.

Ryan, poolside, at the Islander.

My name is Beth and this blog is the story of my journey with my youngest boy, my fifth and final child.

My motto used to be- “Life is all about the condiments… your choices ARE the flavors of your life!”. It was a philosophy I used to monitor my decisions, and it had served me well, both as a warning to be careful in my choices, and as a guide to actively choose the best “flavors” to have a happy life.  That changed on the night of March 17th, 2007 when my fifth and final child was born. A little boy I named Ryan, and from that moment my motto became- “For Ryan…Always!”. It had taken three days and three nights of labor (hell on Earth without an epidural) to bring him into this world, and so the old motto faded and the new one became my mantra. I did not know how much of a life changer Ryan would become that night (even with the motto change), but as time went on I slowly but surely started to understand.

Ryan was different  in many ways from my other four children. They were born of a first marriage (which Ryan was not), they were all a year apart in age (Ryan is 18 years younger than my youngest daughter), he was a c-section, (my others were all natural births), I was advanced maternal age, (I was in my young twenties with my first), and he was the product of a union between a Spring/Fall relationship that was the love affair of my life.

I took for granted the ease with which I had accommodated my other babies one after the other, but he surprised me at every turn. He became jaundiced and had acid reflux so bad he could projectile vomit across the room. He slept so hard I could not get him awake no matter what I tried. He HATED being in the car, and for his first few months screamed like he was dying when we had to leave the house. I started feeling a little nag in the back of my mind, a nag that said their was something not right with Ryan. He was too different from my others, even taking into account he had a different Father, and I carefully began monitoring each of his milestones for delays.

He had average development, rolled over, followed objects, smiled right on time, etc. until his third series of shots around 7 months old. He developed a high fever and his leg swelled and turned red, his nose stuffed up, and he developed an ear infection. After two months and changes of antibiotics, the ear infection cleared up, but after being seen by an E.N.T. doctor he was in surgery for ear tubes within two days. He was almost profoundly deaf from left over puss after his infection.We were warned by the nursing staff at the hospital that we had to muffle sound and keep things quiet for at least three days after Ryan’s surgery, because his hearing would be more sensitive after the tubes were inserted. As Ryan came out of the anesthesia, he became startled and upset by every little sound. What was supposed to be a temporary sensitivity, became a lifelong physically painful symptom of sound over-stimulation.  His changes began and continued from those first moments after surgery. He went from a normal baby, to a not so normal baby that seemed to be tuning out slowly, but surely. He crawled and walked on time, but seemed indifferent to what went on around him.

By the time Ryan was 18 months old, he was barely saying four words, could not point, had no transitioning skills, and was showing obsessive and ritual behaviors. He was also having up to 15 tantrums a day! I knew he was in trouble, and I was helpless to ease his frustration at not being able to communicate. I was really worried when I moved to upstate New York, and made an appointment with a pediatrician for his first major physical since his one year booster shots. The doctor heard Ryan long before he made it into his examining room, as Ryan screamed and raged from the waiting room, to the weighing scale, to the nurse that took his vitals! Ryan was just being Ryan, but the doctor spent five minutes talking to both his Dad and me, when he stepped out the door and came back with a check list. It was an Autism symptom list for toddlers, and it was about to change our lives. Ryan’s doctor asked questions and at the end of the list he said- “I have checked off every box for Autism except for two, they are… he can make eye contact, and he can follow simple directions.” Now I knew just how different Ryan was from my other children. He had put me into a new universe. One I had never had any experience with, and no map (or trite motto) to guide me with. He was Autistic, on the Spectrum, possible suffering from Asperger’s Syndrom and I had no idea what any of that meant!

Tomorrow’s blog will continue my journey with Ryan, after our doctor gave me a plan, and a map to the new universe of Autism.

Have a Blessed day to all the other parents out there with similar challenges as ours.

See you tomorrow.

Beth

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