The following is a personal story written by Alicia, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the story of how she and her family balance the challenges and triumphs of life. If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!
Just recently I was asked by a new friend, “How do you do it?” I responded somewhat perplexed. “How do I do what?” She went on to elaborate, asking me how do I raise three young boys, with two on the spectrum, while living on a single income and living with the constant pain of multiple sclerosis? I honestly rarely stop to ponder my situation because honestly I see it as a way of life and not a situation. Soon after, another friend asked me this and then I began to notice the number of parents on MyAutismTeam that were asking similar questions.
And then I was asked to do a blog post on the subject. So here it goes, keep in mind I am no writer, I write from the heart, sometimes what I have to say is quite blunt and sometimes it will make you cry but it is what I live every day.
We entered the role of parenthood on a cold December day. After 12 hours on Pitocin my oldest son (Big Fry) was taken by C-section due to distress. He passed all APGAR tests with flying colors. From birth he was a baby that had wisdom beyond his years and has always had adult-like mannerisms and humor. We contributed this to being the first born, first grandchild on both sides, the only baby among all our friends. He was constantly surrounded by adults therefore he acted like an adult. His only delay was speech which we just assumed was due to us using sign language. When he was just 18 months, we had our second son (Medium Fry) and Big Fry’s response to having a new brother was to potty train himself. Medium Fry was a different story, he was 2 ½ months early and whisked away at birth due to me crashing on the table. He refused all contact (except mine) from birth onward, he refused to breast feed, and he refused the bottle. He was born at 5lbs 2oz and left the hospital four days later at 4lbs 1oz.
They refused to keep Medium Fry at the hospital because he did better with me. It was a long rocky road and finally at the age of four Medium Fry received the Autism diagnosis, which was something we had decided around the age of one, but couldn’t get any doctors on-board. This diagnosis didn’t stop us from having a third son (Small Fry) whom was born just one year after Medium Fry’s diagnosis. Small Fry was born with a major but non-life threatening heart problem and severe food allergies. Around that same time Big Fry began to struggle in school. We contributed it to having a new needy brother at home. Lo and behold that was the beginning of all the tell tale signs of Autism in my oldest son. So this is how it all started, but still how do you do it?
There are three rules to surviving life with children on the spectrum and little did I know that these three rules were handed to me at a baby shower for Medium Fry. I was given a simple blue blanket that had words stitched on three sides; the words were Live, Love, LAF (I will tell you the significance of the misspelling later), with the final side having my middle son’s date-of-birth (my shower was after his birth since he was so early.) These three words have stayed with us through our entire journey.
Live In my lifetime I have died twice, neither time were there white lights guiding me on to another place. The first time was horrific, to this day I remember the pain and hate that I felt at that time. The hatred was so intense that I vowed to change my life. I recovered and started my journey in helping children on the spectrum. I was only 14 at the time. The second time was during my middle son’s birth, I remember nothing but my husband tells me that I only returned to him after the nurse declared, “It’s a boy but I must take him.” How can we not live each day as if it’s our last? I want my boys to live a full and normal life, so we live in the moment. We cry when times get tough and we laugh when times are good. We struggle together as one through everything. Some people say I need to let go and let my boys live their own lives but my response to that is I will never let go. I give them space when needed but I’m always there to catch them if they fall. There is a poem my mom would always read me when I was younger. The poem stated the only gift a mother (or father) can give their children is roots and wings. Wings to allow them to soar to their fullest potential and roots to guide them home when they fall.
Love is unconditional, love is blind. Love your children no matter what they do. We have no way of knowing the pain they feel, how hard it is for them to do daily life skills. But with unconditional love they can make it through everything. When my oldest son was diagnosed, I cried. The doctor, who knew our family well, looked at me and asked, “Why are you crying? You didn’t cry for your middle child so why do you cry for you oldest?” I said, “This can’t be, I knew something was different with my youngest from birth but my oldest is so normal.”
At that point in time I was given the best words of wisdom. The doctor looked at me and said, “Does this one word (Autism) change who your son is, does it change who he will be, and most of all does it change how much you love him?”
Think, do you love your child any less now that you know why they struggle? If you are like me, it is just the opposite; you love them even more. Don’t get me wrong my boys are a challenge but to be honest I find my NT child way more of a challenge than my two on the spectrum. Times get hard but I love them through it. Pull everyone you can into your circle of love, it is contagious. If they see your pure admiration for your kids, they will also feel it. And honestly the more people you have in your circle the better it is.
LAF We spell laugh this way because L.A.F. are my son’s initials. Little did we know how much he was going to make us laugh. When you laugh at the little hitches in your life you feel better. Stress goes away, solutions become evident. When times are tough, let your mind wander to a time when your child has made you laugh. If your life is anything like ours, your mind won’t have to wander far. On any given day, I can count the melt downs on one hand. But most days the number of times my boys make me laugh are far more than the number of fingers on my hand. The good does outweigh the bad and we often just need to sit back and remember.
So Live, Love, and LAF. My boys were a gift from god and though his plan is sometimes unclear I know he only deals us what we can handle. Put your faith in yourself and know you can handle life on the spectrum.