Raising a boy with physical and mental challenges can be difficult for any parent.
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I used to think the meaning of life was about what you have accomplished and who you have become. I learned over the past several years that the meaning of life is how much you love and how others love you.
After my first son was born it took a long and difficult process to have my second child. After two miscarriages, I had just given up. That is when I finally became pregnant with my second son, Patrick. The pregnancy was difficult and I developed gestational diabetes. His sugar levels also were high and he spent 11 days in ICU after being born. It took them that long to stabilize him.
Eighteen months later, I had my third child Kristina; a healthy baby girl. By then I thought the difficulty with Patrick’s health had passed.
He was held back in the second grade and entered third grade with his younger sister. By the sixth grade, he was failing again and held back again.
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It had just begun.
A few days before his fifth birthday, during a hurricane, Patrick was rushed to the hospital for emergency surgery after a diagnosis of Cholesteatoma (a non-cancerous skin growth in the middle section of his right ear, behind the eardrum.) It continues to grow back and affects his hearing. Seven surgeries later he only has 10 percent hearing capability in his ear. During this same time, it was also discovered he had Amblyopia in his right eye which is an uncorrectable loss of vision. Even with treatment, the vision in his right eye is 2700, and we have been told there is no hope of it getting any better. And more recently, Patrick exhibited signs of a hunching and it was determined he has Scheuermann’s disease, an abnormal curvature of the spine that usually develops in boys between 15 to 18 years old.
Then there were also problems at school. Patrick often refused to do class work and homework. Temper tantrums were the norm. He was held back in the second grade and entered third grade with his younger sister. By the sixth grade, he was failing again and was held back again. His sister moved a year ahead of him in school.
Finally, after years of not understanding why he was having so many challenges, Patrick was diagnosed with Autism Spectrum Disorder – ASD – when he was 12 years old; this explained a lot of his behaviors at home and in school. Before the diagnosis, I knew there was always something wrong, I just did not understand why –or what it was. After this diagnosis, understanding Patrick was a lot easier.
Raising three children keeps me very busy. This part of my life is easy. The challenging part is having a child with numerous mental and physical issues.
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In school, Patrick is a “loner.” He does not have any friends, still often refuses to do his class work and isolates himself in his room at home. He is extremely intelligent but has difficulty expressing himself. Patrick’s, teachers are amazed at his intellect but disappointed with his effort. He is 16 years old and still trying to get out of middle school.
The term spectrum in ASD has a wide range of symptoms, skills, and levels of impairment. Some children are mildly impaired and some are severely impaired. Patrick’s issues are evident but not a severe impairment. He does have issues with socialization as most ASD kids do. He only articulates well with those he is comfortable with.
Being a single mom, having a demanding career and raising three children keeps me very busy. This part of my life is easy. The challenging part is having a child with numerous mental and physical issues. But even with all his challenges, he is a loving, thoughtful young man. If I am sick, he will offer to rub my back, and if someone bothers his sister, he wants to protect her.
When I pick him up from school, he has experienced an entire day of being uncomfortable in a situation he doesn’t want to be in.
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The greatest thing about Patrick is he does not think he is Autistic, he says he just thinks differently than everyone else. Life with him is a daily adventure. He has the typical traits of a teenager, not wanting to shower, doing his own thing, acne, working a small job mowing a lawn once a week, etc. Then there are the things that are challenging. Patrick only likes three t-shirts of his collection of 20 plus. He wears them constantly, alternating them each week and tells me his other shirts do not fit him. After I show him they are larger than the other shirts and will fit him, he begrudgingly wears them. Every morning is a game of hiding the “old favorites” that have not been washed.
When I pick him up from school, he has experienced an entire day of being uncomfortable in a situation he doesn’t’ want to be in. He is so happy to see me and before the door shuts and the seat belt is on we are heading out on a verbal adventure of what is on his mind. I have heard about the possibility of time travel; adventures developing a robotic device that will assist people who are handicapped at home; and a detail of how he will develop technology for exploring black holes. The ride home is 15 minutes and he does not miss a beat the entire ride! He is so excited to have an audience and someone who will listen to his ideas!
I tell him every week that he has a wonderful future ahead.
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When we get home, it’s right back to his room, which is his base. His most comfortable place is in his bed with his covers over his head tuning the world out. I usually coax him out to watch a movie or to complete his chores. I have started Family Game Night so he can get out of his shell (his room) – he does not like it, but participates because I ask him to. On the weekends I try to get him out of the house, to a movie, a drive to a park; it is difficult. He does not like being in the car more than 30 minutes (his words), which I find hysterical because that is our best quality time together! The conversations we have are very intense when he is in the car – we should drive around more often!
I tell him every week that he has a wonderful future ahead. He has the ability to do anything he puts his mind to. Patrick will find his place and discover a career that will satisfy him and be able to function as an adult. This may take longer than most kids, but I know he will be able to do it.
People have said to me, how do you do it? You have been raising three kids on your own and one has special needs. My response is always the same. My oldest is grown and he is now accountable to the United States Marine Corps. My other two are typical teenagers. I am so lucky that I have three wonderful children; one has grown into a remarkable adult and the other two are on their way. And Patrick, my ASD child, has shown me that the meaning of life is how you love. Love is unconditional and an affection with no limitations.
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Thanks for sharing, I’m a single mom of aspergers teen. We got the diagnosis at 17. I already felt alone raising a ADHD now we added aspergers. I struggle watching other doing what so desperately wish son could do!. I didn’t know I could cry this much in 6 months. Karen
It is my firm belief that you dear mom will be well rewarded for all of your efforts and good works. Our Heavenly Father will bless you greatly. You are amazing and thank you for sharing your story.
Thank you for your kind words! 🙂
Moved to tears, honored to have known both the Mother (Jennifer) and the writer Barbara. God puts children with the people he knows will be fantastic nuturers , he definately made a great chpice here. Barbara an amazing piece!
Thanks – but this time – I was the honored editor – credit goes to Jennifer!