I typically do not utilize my photography blog as a tool for anything other than my professional photography services. however, the Autism diagnoses of the child of a great, lifelong friend of mine recently has had me thinking. What am I doing to raise awareness? The story, below, is the story of my son Sam. it is a story of hope.
Sam I am …
7 years and roughly 8 months ago, I was given one of the biggest blessings I will ever have in my lifetime. Samuel Tully Jordan was born, weighing in at a whopping 9 lbs. he was named for my Father’s best friend, a man I greatly admired, Sam Johnson. Sam passed away due to Non Hodgkin’s Lymphoma during my pregnancy. My brand new little Sam was my easiest delivery out of my three children. The only unusual thing that happened during my pregnancy was preterm labor at 34 weeks. My OBGYN slapped me in the hospital, and put me on a magnesium drip for three days to stop the contractions. They stopped – only for me to be induced at 39 weeks because he was such a big baby. I often look back at this scenario and wonder if that is what happened to essentially cause my son to be “different”.
I believe in the studies that show a genetic predisposition to Autism. and I believe in a trigger – that elusive something that switches off the light in their eyes. I don’t know what Sam’s trigger was and I will likely never know. I, like most parents of children with Autism, have spent an inordinate amount of time and expended a tremendous amount of emotion trying to determine what that trigger was.
Sam was a sweet, calm, happy baby. I distinctly remember thinking and saying that God gave me such a good baby because he was my third and I was so thankful! His first symptom? Flapping his hands when he watched Blues Clues. His second? Lining up VHS tapes down the hallway. (Crawling, mind you.) to which my response was to relocate the tapes to an out of reach location because the behavior struck me as very odd. he was making eye contact, and didn’t have that spacey, vacant look in his eyes that your “typical” child with Autism has. Sam’s pediatrician asked me the normal developmental questions and he wasn’t missing milestones. I poured over the Internet looking up symptoms and he just did not fit into the definition of Autism.
By 3 and 4 years old, he spoke in broken, fragmented sentences, and referred to himself in third person. The words you, or I, or me were unknown to him. he would say “Sam bye?”, if we were leaving the house. When he wanted milk, he would go to the refrigerator and say “Momma want milk?”, combining asking me for milk with stating that he wanted milk. No matter how many times I corrected him or worked with him, he had no comprehension of what I was trying to teach him.
He lined his Thomas The Tank Engine trains and Buzz Lightyears up on window sills and tables, and stared at them, flapping his hands. he drew hundreds and hundreds of tiny circles at the kitchen table. (With a pencil, mind you – his fine motor skills were impeccable.)
Flashing lights, ceiling fans, sparkly objects, and wheels mesmerized him. Parking garages and the green striped roof of the sunroom at Rafferty’s terrified him.
He slept well, was a good boy, and was happy.
By age 4 he wasn’t potty trained. I’d been trying off and on for two years without forcing him or punishing him for refusal in any way. He’d scream if I put him anywhere near the potty, seeming to be scared that he would fall into the toilet. he had chronic constipation, that was painful for him. He’d stand in a corner and hide, clenching his little bottom together to hold it in, and bawl. he couldn’t stand not having a diaper on – he hated being naked, even for bath time. I could count on 8 fingers what he would eat. Cheese, bread, goldfish, Kraft macaroni and cheese, pretzels, corn chex, milk, and waffles.
He was diagnosed at High Hopes in cool Springs with Autism Spectrum Disorder, Sensory Integration Disorder, and Obsessive Compulsive Disorder. I was devastated. Developmentally, he scored between ages 0-1 … and he was 4 ½ years old. Sam saw an Occupational Therapist for 1 hour on Tuesday, and 1 hour on Thursday per week (at $100 per visit) at High Hopes, and after much red tape, countless phone calls, countless email, and advocating for my child, was accepted into an early intervention program through the school district for three hours a day on Monday, Wednesday, and Friday. Unfortunately, reality dictates that help for a child with Autism is not handed to anyone on a silver platter. it must be pursued relentlessy. Childcare facilities do not accept almost 5 year olds who are not potty trained. so, the remainder of his days were spent by my side, with me working with him, utilizing tools and processes that his occupational therapist taught me and I‘d learned from books and other resources regarding Autism and Sensory Integration Disorder. For months and months, there was no progress. I’d cry, fretting with worry over his future. would he live on his own when he grew up? Drive? Go to college? Have a job? Girlfriends? a wife? Be a daddy?
Then slowly but surely, minor miracles began to occur. this brings me to my purpose in writing this. With help, symptoms, behaviors, and delays can sometimes be completely reversed. Remaining characteristics can dwindle to unrecognizable or barely detectable. Strengths can be built upon and what truly feels like a miracle can happen.
I could not possibly more proud of my little boy. he has no idea how much he has already achieved. one day when he is much older I will tell him. I suspect that the day that he realizes he is different isn’t that far off. he is aware that it is different to have an aid at school, and he recognizes that he struggles in some areas at school. There are children who treat him differently and he’s asked me why. There will come the day that it is time to tell him that he has Autism, and it will be deemed his special gift. because that is exactly what it is.
With strength, hope, resilience, advocating for your child, speech, behavioral, and occupational therapists, therapies, and teachers, significant progress can be made. When Sam was 3,4, and 5 years old, I never could have dreamed that be would be doing so extraordinarily well today. The minor miracles turned into what feels like one enormous miracle.
The first minor miracle (and let me tell you, it was one of the best days of my life!) was the day that I convinced him to sit on the potty. that day, he overcame his fear, and was fully potty trained within 24 hours. he has never even had an accident. he was 5 1/2 years old and I was ecstatic!
Kindergarten was a rough year for him. The school district we were in turned him down for occupational therapy, and he did not have an aid to assist him through his school day. His teacher was overwhelmed (she had two little boys in her class with Autism and no help), and Sam hated school. he was confused, couldn’t effectively communicate or understand instructions. this scenario invariably causes emotional melt downs in a child. Part of his IEP (Individualized Education Plan) required that the school psychologist break down his IQ in order to implement teaching/learning tools to accommodate the manner in which Sam’s brain processes information. The results were interesting to say the least. His IQ was consistant with that of a child with Down’s Syndrome. he scored in the genius ranges for problem solving, and math areas of his brain, and he has a photographic memory. he scored several points below the low end of normal in all other categories, the worst of which was abstract thinking. I’d wondered why I was unable to teach him the days of the week and the months of the year before Kindergarten like I did his brothers. You can’t see Monday, or February. You can’t touch Friday, yesterday or tomorrow. it wasn’t possible for him to learn those things until building blocks were in place.
Autistic children are visual thinkers; they have to be taught differently than other children. They have to slowly be encouraged to try new things, new foods, new routines etc. as they get a little bit older, they begin to have a minor concept of social cues, and social normalcies. Specifically if they are receiving help with these issues at school, in therapies, and at home. When my older boys were 2 and 3 years old, I could ask them to make a sad face, a mad face, a happy face and a scared face. Not only was it adorable, but it’s a normal phase of development for small children to recognize their own emotions and how the look on their face is perceived by others. Sam had absolutely no concept of how his actions and emotions affected those around him or that he could communicate through his actions and emotions. But he does now! he had a social awareness class last school year that helped with this tremendously, and I continually point out to him the manner in which over excitement over being happy, yelling when angry, a melt down when frustrated or sad (or tired) is perceived by everyone around him and what is socially acceptable. he learns through peer models, and mimics his peers. this is incredibly helpful in Sam’s Autism being almost undetectable by other children.
I have slowly, and methodically introduced him to new foods. His sensory issues cause everything to taste much more strongly to him than to us, and he had major texture issues. Sam would gag to the point of vomiting with the introduction of new foods. Everything he consumed had to be bland. he was 6 ½ years old before he ate a piece of candy. His Occupational Therapist taught me to have him touch the new food, smell the new food, have it on his plate regardless of whether he ate it, and eventually touch his tongue to the new food. this is a long process and forcing them does absolutely no good with a child with sensory issues. over the course of three years, Sam has gone from eating cheese, goldfish, bread, milk and waffles to:
Pasta, spaghetti sauce, pizza, apple juice, potatoes, green beans, corn, spinach, asparagus, mushrooms, broccoli, rice, whole wheat bread, yogurt, pudding, corn bread, cake, ice-cream, pancakes, triscuits – the list goes on and on. he ate a full plate of Thanksgiving dinner just a few weeks ago!! My worries over whether he would ever eat anything nutritious are over – and as we all know, nutrition is vital to brain development and overall health. this is another minor miracle that has changed Sam’s life, his health, and brings him one step closer to “normal”.
With my older boys, in kindergarten, 1st and second grades, studying the weekly spelling lists was a daily routine. Sam reads on a 4th grade level (he’s in second grade), and reads incessantly. Sam can look over a spelling list one time, and he has it memorized. he receives 100% every time without studying and he typically gets his bonus words correct as well. With his math skills, as long as he has charts or flash cards to learn from (visual thinker), he memorizes and he’s got it. he is fascinated by the solar system, and can tell you all about the planets and their moons. he is fascinated with the weather – I think science has become a theme! He’s an amazing little artist, and his computer skills are fantastic.
He can skateboard, ride his bike, play ball, and beat a video game. he can sing beautifully – on pitch and in time in a clear, strong, confident voice. he memorizes songs and lyrics with baffling rapidity, and most definitely displays an affinity for music that will be fun to watch as he grows. I suspect there is a great talent yet to be discovered.
Sam’s speech is almost completely normal. There are times when he is trying to communicate a thought and it comes out in a roundabout manner. But gone are the days of having no idea how he feels, what he thinks, or what he’s trying to say. gone are the days of lining things up. gone are the days of drastic, heartbreaking delays. gone are the days of worrying if he will go to college, drive, have girlfriends, get married, and have children of his own.
1 out of every 150 babies born are diagnosed with Autism Spectrum Disorder. ASD encompasses Autism, Asperger’s, and Pervasive Developmental Delay – Not Otherwise Specified. it effects every race in the world, and every socio-economic demographic equally. 3 out of 4 children with Autism are boys. More children are diagnosed with ASD than babies born with Down’s Syndrome, Cystic Fibrosis, and children diagnosed with childhood cancers. The range of behaviors, symptoms, and the level of severity is enormous. There are accompanying disorders such as Sensory Integration Disorder, OCD, Immune Disorders, ADHD, Anxiety Disorders, and seizures. There are low functioning children with Autism who have significantly more difficult and many times incurable obstacles. The prognosis for high functioning children with Autism is not nearly as bleak as it once was ~ as long as the child is receiving help. There is so much that so many do not know about this expansive spectrum, and unfortunately pediatricians often miss the signs. I have friends who are having babies, and friends with children receiving diagnoses of Autism Spectrum Disorder. this disorder is not going to go away any time soon, and I’d bet that every person who reads this knows a child with Autism. we hear it all of the time, and it is so true. Raising awareness is very important.
I’ve had several friends ask me if I could go back in time, would I have had Sam vaccinated? The answer is yes. Only I would have broken up the dosages and spread them out so as to avoid inundating his immune system. There are studies proving that with children who have a genetic predisposition to autoimmune disorders and diseases, overwhelming their immune system with multiple vaccines in 1 dose may be the trigger. this makes sense to me. Autoimmune disorders encompass many different physical ailments to include allergies.
Early intervention is so important for children with Autism. I cannot emphasize that enough. With help and determination, I have watched my son bloom. I want that for every mother of an Autistic child. Accepting and facing the diagnoses is such a painful process, but seeing my son overcome so much has been such a joy in my life. so persevere moms and dads of children with Autism Spectrum Disorder. There will be many heartaches, tears, frustrations and worries. But along with those things come blessings, triumphs, pride, and immense joy. My son is no longer lost and trapped in his confusing little mind. I watched the light bulb turn on in his head, over the course of 3 years, and I watched symptom after obstacle, after delay slowly go away. Sam may never be “normal”, but Sam is a special little boy. he has taught me, his mother, so much. I am incredibly proud of him.
I love you Sam. bigger than the whole universe.