By Rose Cutting
April 2nd kicks off National Autism Awareness month and for our family it is a significant time to remember where we started, how far we’ve come and the work we still have to do. Our son Buddy is Autistic. With acceptance, understanding, and love Buddy and our family have pledged to fight. To be honest living with autism might be easier than explaining what autism is, but I will try.
The technical definition of Autism Spectrum Disorder (ASD) is a neurological condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts. It is a spectrum because there are so many variances between each individual that it fills a spectrum.
Autism facts from Autism Speaks…
• Autism now affects 1 in 68 children and 1 in 42 boys
• Autism prevalence figures are growing
• Autism is one of the fastest-growing developmental disorders in the U.S.
• Autism costs a family $60,000 a year on average
• Boys are nearly five times more likely than girls to have autism
• There is no medical detection or cure for autism
Might I also add in rural America services for ASD are near nonexistent so if you don’t qualify for State Services you either don’t get services or can only rely on what your local school district can offer. Which as great as schools are an ASD individual needs more than just a regular school day, research has proven that.
I would like to do a small disclaimer and inform all you that I have degrees in Dairy Herd Management, and Agribusiness, nowhere in my educational background is there any form of early childhood or special needs training. What I say only comes from what our son and the wonderful people that have surrounded him his whole life have taught me, oh and I might have picked up a book or two, and Googled A TON!
I am sorry if what I say here isn’t politically correct, or is too harsh, but when dealing with Autism everyone agrees on ONLY the following two things:
1. Autism is time sensitive ~ The faster a diagnosis is confirmed, and a plan is in place (and consistently followed) for the individual to receive services the better his or her ability to live with autism will be.
2. If you have met one person with autism then you have met one person with autism. ~ No two people, families, educational teams, doctors, or circumstances are exactly alike. Which makes treatment plans hard and time consuming to better come up with really good effective therapy plans will be tailored to individual needs. But when a plan works and you see it working the excitement level can reach dog pitch tones!
Our journey with Autism started when our son was 18 months old and we were asked by a trusted caregiver if we noticed our son didn’t play “right?” Yeah …..go ahead and laugh… I did! But yet in the back of my mind I knew if I was going to be a good mom for Buddy I needed to follow up on this conversation. Buddy was a good baby who went everywhere with his dad and I and tolerated it all very well, his eating habits were a little difficult, and at the age of 2 he only spoke 3 words his dad and I could understand.
We started with speech therapy from *Birth to Three (*state funded program) from the age of 2-3, and the day he turned three we started him at our local school Early Childhood Program. We knew time was crucial and we didn’t want a lapse in services because we had been told about regression and that for Buddy that was most likely going to be an issue. At the end of the school year the professionals at our school district encouraged us to go back to have further OT testing done because of lack of motor skills, and poor eye hand coordination. After further testing Buddy was diagnosed with having Sensory Processing Disorder (SPD) Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. At that time he was also diagnosed with Apraxia of Speech. Children with CAS have problems saying sounds, syllables, and words. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech.
A couple months later we were asked to come back to the hospital for one more round of tests and evaluations. This day long appointment on August 4, 2009 ultimately led to the final diagnosis of Autism when Buddy was just 3 ½.
Now here is where my mom mode comes out and I let you into a very personal part of our story. After a very, VERY, long exhausting day my husband along with Buddy and I were asked to wait in a room with one of those mirrors like you see on cop shows, and although we were never told there were people behind the wall we could hear some voices. Buddy would walk up to the mirror lift up his shirt rub his belly, smile, and giggle when he heard the laughs from the other side (this should have been the Doctor’s first signs our boy wasn’t like the statics we were about to hear). The doctors and colleagues observing Buddy came into the room with all his of Buddy’s files; looked at my husband and I and told us point blank that our son had Autism. They went on to explain a laundry list of things our son would either struggle with or never be able to do. These things included: never being able to function on his own, verbally or nonverbally communicating, being potty-trained, reading, writing, and learning social or educational skills. Also that he would need 24/7 care for the rest of his life and only if we hurried and tried; some things he might yet respond a little. Right before they left the room the doctor looked straight at me and said; “your son will never say I love you mom and hug you, he won’t know what that means and won’t do it.” Unbeknownst to those doctors, they had just met a fighting family and a fighting kid who would own this condition and work relentlessly to prove them wrong.
Upon arriving home we found ourselves determined to figure this out. We looked into all area options and were ultimately denied of any services because Buddy was able to make a “little eye contact, and exhibit a desire to entertain himself”. No services or even a direction of where to go with this little boy that we knew had so much potential but no idea how to help him. A good family friend then gave us the name of a family that had been in our shoes only a few months before, and that (now very good friend) and her family extended every piece of advice and help they could to help us on this journey, which led us to hiring an agency over an hour and a half away to come and work intensively in our house with Buddy for 40 plus hours a week using a therapy called Applied Behavioral Analysis(ABA), which tailors its therapy programs to the specific child’s needs and abilities. He has done this therapy since he was 3 every day for a minimum of 3 hours each day of his life, NO spring breaks, holidays, or time off of any kind, and he has grown in ways that astound all who surround him. And now at the age of 11 he is in the same classroom as his peers with little support from an aid, he does need to take sensory breaks, but can now tell us (mostly) what his sensory needs are, and how to help him get through his day. Math and subjects of interest to him need little extra help, and he has very good friends that he socially interacts with even plays sports with, and not to be forgotten is his love for the pool and his bike which lead to a whole other social skill that he does very well at! His humor, desire to be a part of the world around him, and ability to deal with change more than most on the spectrum serves him well.
As far as goals go, I generally do not think further out than a year because usually so many things change so fast we are always rewriting his goals. Mostly, because he has achieved them and needs to build on skills learned, but things like reading and speech are very difficult for him and those goals are always being reviewed and altered to meet his current needs, and tolerance levels then we push a little more. Buddy has many goals for the future and speaks to them regularly. He wants to go to the high school to be a big kid with his friends, “you know mom hang out, do sports, and walk by myself to school”. Then he has his future narrowed down to 1 of 3 careers a. A paleontologist (no surprise there), b. An animal Dr/pet store owner (again no surprise there), and c. A fish farmer (BIG surprise there as he and his dad have it all mapped out and his dad says we can totally do that). We are blessed to have 3 wonderful kids and as parents we have the same goal for each of them…., to raise well mannered, respectful, contributors to anyone or anything they are part of and that they know happiness, love, and have fulfillment from a good day of work.
You might ask… Where do you find your strength?
~From our son and those like him who at a very young age aren’t given much of a chance, and not expected to exist, or contribute in a neurotypical world, but go ahead and do it anyway!
~From those families, who had the tougher battle years ago when the word Autism wasn’t as well known. THANK YOU for making a path for us to follow!
~From the education team that stays up at nights thinking of new ways to reach our kiddos, helps us help them, and shows us all unwavering support and love.
~From the families and siblings that when committed to truly helping those on the spectrum has their lives turned upside down almost daily. You Don’t Turn Autism on and off it’s always there, and there is no cure.
~From the friends that understand this is a 24/7 365 day commitment and even when we want to say yes to activities, volunteering, or just getting together for laughs we can’t because the weather system that you are only hearing about on tv, our son is already feeling press on his body, causing all his senses to be at their height of alertness so much that he can now smell the supper we had 3 nights ago (that he loved) but now causes such a headache that he is nauseous, pacing back and forth through the house jumping so his joints can feel the impact allowing him to know where his body is in relationship to the ground, while running into anything that won’t move for him because his eyesight and depth perception have been altered, a bag of chips has been consumed with a gallon of milk to give a calming sensation through oral senses, in pain because as he paces and creates a draft over his skin it’s not only cool but feels like pins and needles being stuck into him, and emotional and stressful crying because the last time it stormed the power went out and everything was dark, scary, and didn’t work “remember mom when I was a little boy?” yes Buddy mom remembers that you remember that horrible storm when you were only 3 yrs. old, because that taught mom we have a plan for everything and the better mom is prepared and in tune with you the stronger we all are.
~From a community, that not only openly welcomes our son but his family and our quarks, laughs, cries, celebrates ,keeps him safe, understands we may have to have different rules for our outings, or leave early or not attend at all when we really want to, and supports who and what we are without judging, dare I say Go Hawks 😉
I firmly believe in a few things, and these are just my personal views.
1. No one is so special that a child or situation is given to them over anyone else, Autism, doesn’t care about your social, or financial situation.
a. What makes your situation special is how you choose to react and go forth on the journey you have been set upon.
2. Our son has made our family better people for having him in our lives, and I can honestly say in 10 years I have NEVER asked why us, just for help in getting through a few sticky times.
3. Siblings have the hardest job of all! I see daily the struggles of being a young person with adult troubles, and as a mom I fear I am failing my girls. But I am also smart enough to figure out the right people and ways to get Buddy’s sisters support too.
4. Our son is full of so much potential and we as his parents need to step up and work just as hard as he does on a daily basis to assist him. We made this pledge the first time we held him and heard his first cry, he and his journey is OUR responsibility and it never ends. Even when we are sick and tired; we fight through it because there are times no matter what he does he still needs a sippy cup of milk, his blankets, a dinosaur documentary, mom and a rocking chair. I can take Tylenol for the headache, and sleep some other time my Buddy needs me, but not as much as I need him.