This is an article written by a strong women who is a nurse and mother, to a very sweet young man. She does not want her name mentioned, nor her son’s. I honor this, as she was very giving in that she shared her story with us!
Anonymous: Living with Autism
My son was born 15 years ago. Autism was not a household word or even in our radar back then. His sister was born healthy and meeting every mark early without fail. We had no reason to suspect any different of our son … until we did.
He was born a week early at 9 lbs 10 oz. He was born healthy and passed all the newborn screening at the hospital. He had a disorganized suck and struggled with breastfeeding but so did his sister. I pumped and bottle fed him which he took to without issues. He refused to drink formula which did not bother me because I wanted to breastfeed him. He hatted to be swaddled and wanted to be in motion all the time. He was definitely vocal about his desires. He was my temper tantrum baby. At his first well baby visit I mentioned that his eyes were not tracking like they should. I was completely dismissed. After several visits till the physician finally did a thorough eye exam at my insistence and discovered he had a lazy eye. He wore at patch for months to strengthen his eye. As he grew, he was not meeting the marks like his sister. I was constantly told by the pediatrician to stop comparing him to her. He would not track to sound so I was convinced he was deaf. He would not roll over. He would not support his own body weight. He would not grab for objects to play with. He would not crawl or scoot. He would not babble, coo or mimic sounds. He was a very poor sleeper and would wake up if you even walked past his room. He would spike high fevers if we had more than 2 people over in our house. Finally, at 10 months when he first learned to sit up the pediatrician decided to listen. He still felt nothing was wrong but referred us to Early On for an evaluation probably just to shut me up. So, at 11 months of age, my son was diagnosed with Autism and a severe developmental delay.
This was the beginning of our new journey.
My son was enrolled in their birth to three programs. He received intensive therapy which required me to reduce my hours at work. He was placed in a classroom specially designed for autistic children that met 3 times a week. He received pool therapy twice a week and home visits twice a week. My husband at the time was glad to pick up extra hours at work. He wanted nothing to do with the therapy and was having a very hard time accepting the fact that anything was wrong with his son. My husband would blame me for holding him too much or allowing him to have the bottle longer than he should have. No, these things do not cause autism, but my husband needed to blame someone. This was the beginning of the end of our journey as well.
My son began to flourish with his new therapies and began to catch up. He stood at 12 months and walked at 15 months. He never really crawled but finally figured out how to slither along the floor. His speech therapist recommended for us to try sign language. At 12 months he was finally able to communicate with us. His first spoken word was at 15 months. He would still rub his face raw on the carpet and band his head on the floor and walls if he was stressed. At this point we changed his diet to a gluten free, casein free diet. 15 years ago, the Paleo diet was not popular and finding food was difficult. I would spend hours researching recipes and stores that sold what I needed. It was like I turned on a light switch. He began making advancements in leaps and bounds. He still had his difficulties. He hated to be pushed outside his comfort zone. So, with the guidance of his special ed teachers and therapists, I constantly pushed the envelope. When we started, I was convinced Rain Man was going to be more functional than my kid, but I saw hope that maybe one day he could actually hold a job.
Jenny McCarthy came out with a book on her journey with autism at this time which gave me hope. I was convinced I was going to unlock the window and pull him through. And I did.
He was enrolled in preschool at the age of 3 at the local public school as an experiment. The school wanted more funding so decided to open a preschool. He was their first special needs child. He was not a group child and spent most of the day under the table. He could not use scissors and colored all over the table. He was not potty trained. But at 4 and 9 months he finally was. At 4 and 11 months he started kindergarten (against my wishes but the preschool was done with him after 2 years). He struggled in elementary school, but his teachers were amazing and found ways to help him grow. He was diagnosed with ADHD against his father’s wishes. Again, there is nothing wrong with his child. He felt that the teachers and I were in cahoots. His teacher was the first one who finally stood up to my ex-husband and said there is something wrong with your child and he will fail if you continue to do nothing. My son was placed on medication and it was night and day different. He finally could function in a classroom setting. He still needed to be redirected 15 times every 30 minutes but was finally redirect able. After a series of dose and medication changes, he appeared almost as normal as his active peers.
He still had his quirks. He would come completely unglued if his routine was changed without warning. The teachers did a great job of preparing him ahead of time for assemblies or would email us if she was going to be absent. He was still not good with groups, so we always made special exit plans for mandatory school music concerts. He made it through most. He hated socks with seams, clothes with tags, tight fitting clothes and rough fabric like jeans. His words would get stuck on repeat as most autistic kids do. He hated sleeping or waking up so school hours became increasingly difficult as he got older. He did not tolerate people entering into his personal space but couldn’t see an issue entering theirs. He is extremely suggest-able which leads to issues around mean kids. I have been called more than once from school because kids got him to eat things, he should not have including chicken nuggets dipped in hand sanitizer. He spent all of elementary and middle school in speech therapy. His mouth struggled with forming the correct sounds.
Today my son is a sophomore in high school. He is doing an online program because he did not tolerate a brick and motor high school well. He is getting all As and Bs; a drastic difference from a 1.7 from last year. He is able to work at a slower pace and take 3 hours to complete a test. He still struggles with completing work he deems stupid or better known as busy work. Yes yelling, screaming, and swearing have been known to motivate him. It is OK for parents to have meltdowns too. He still has his quirks. He loves his routine and will melt if I change what he was planning on doing. I still do because life does not always follow your plans. I want him to be able to cope with life on his own. He still hates wearing clothes and can usually find him wrapped in one of his favorite blankets. He can tolerate groups in small doses. Yes, life gets to people which results in a day or two of crabby antisocial behavior.
Life with autism was not what I expected but it is what I got. It is the hard road less traveled. It is the dirty looks in the store, church, restaurant as your child behaves differently than regular children. It is the creative way you must adapt to help your child succeed in life. You will have to teach the same lesson a dozen times in a dozen different ways before they finally start to understand which path you want them to take. It might take a billion more times before they finally master it. Keep pushing the envelope and expect an explosion but do not forget the recovery process. Go back and give hugs and talk about what happened and what they did well. Talk about what could have been done better. They will always say for you to not do what you did. Remind them that life does not happen the way they want and give them strategies on how to cope with what set them off. If you keep them in their protective bubble, they will never grow to their full potential.
Thank you, to this courageous mother for sharing her story with us. We as people don’t always understand autism and the facets that one has to go through. I hope that this enlightens and broadens your mind to the struggles and triumphs that families go through with raising an autistic child.
Shaun Marie Sever, MACJ, RN, LNC (The pictures are not of her and her son, they are random photos added by me)