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Autism Parenting is a 24/7 Job

April 13th, 2013

Autism parenting has its good sides and precious moments but let’s face it, most of the time it’s a hard work. We have to be on guard 24/7 – at least in our case (mild end of spectrum supposedly).

Our supervising therapist suggested a support (psychotherapy) sessions for us – parents, as from experience he knows that Autism affects not only a person on the spectrum but the whole family. We have days when we feel like we can overcome any obstacle and feel positive about the future of our precious boy but other times, when he does everything he can to change our minds, we feel discouraged and fearful… Why is that? I know kids on so called high functioning end of the spectrum (Asperger’s and other “genius” syndrome) can pretty much give you (parents, guardians, teachers) some room to rest, as long as they have a pre-scheduled plan of tasks to do. In Mikey’s case we have to “entertain” him constantly seems like… OK, I am exaggerating. He is pretty good with electronic gadgets (iPhone, Kindle, laptop – shame you cannot hear my laughter now… Do you remember my previous post? Then you understand. By the way, iPhone rested for 2 days and got its life back – miracles still happen). He can stay focused on one game or going through his playlist of favorite songs and videos and we get 20-30 minutes of free time, if we’re lucky. He used to love drawing and could spend hours just doing that…  He still draws occasionally but no longer than 10 minutes at one go. So what does he do? If you’re an Autism Parent yourself, you can pretty much guess and empathize. But this blog is not only for us but also to make people aware of what Autism looks like behind the closed doors, day by day…

Michael is a never ending source of energy. He can run a marathon, sky dive, swim across the lake and back, come to have a quick snack and drink on the go and get right back into his bizarre chase. He constantly tries to climb things (stairwell, cupboards, fences, windows – that’s why we installed bars all over the house windows). We don’t want to be overprotective or too paranoid but we cannot just sit on the couch and enjoy a quiet evening, watching a movie or listening to some good opera… When we do, he may end up on top of the fridge or on the Moon itself, eating things he’s not supposed to – like medicine, wax candles or something even more extreme. Therefore we try to take turns in taking him down, calming him down etc. It’s even harder now, when we have to raise his baby sister too. She’s going to be 3 in a few months and demands our attention as well.  Frustration increases as the problems in other areas arise simultaneously – stress at work, global crisis, obligations and commitments – AHHHHHH!!! So what do we do? We cannot change the circumstances – Autism is a lifelong condition that through solid therapy program may teach a person on the spectrum to function in our society just like others and be independent in the future. We fully believe this will be the case with Michael but what about now? How many more years it’s going to be a 24/7 job?

I know my words sound bitter and maybe even sarcastic but I just wanted to bring a full picture first before I get to the point. Autism parenting is definitely a full time job. It takes sacrifices, it steals “me” time and it can easily overtake our life. Everything we do, we plan and we think seems to be focused around big “A”. Poor us, right? Let me tell you how I see it. Again, I am going to bring God into this equation… Humor me for a moment and just imagine God being an Autism Parent/ Grandparent/ Guardian and you being a kid on the spectrum. You know He made you in His own image (just like our kids are often pure copy of us). He rejoiced when you made your first steps, when you said your first word etc… just like you were ecstatic when your child was leaping through milestones. OK and now we come to the core. God has His way to keep us in line and closer to Him once we become His children. Yet His love never ends, nor does His patience (wish I was more like Him). We do the most stupid and idiotic things, don’t we? You know that you get mad, dramatic, pouty etc. when something goes wrong or you don’t get your way. You blame the boss for being unsympathetic to your personal life circumstances; you blame your family and friends for not always understanding what you’re going through, even a poor postman for delivering more bills instead of encouraging letters or dogs for barking and not meowing.  You know what the problem is here? The “Me” factor. If you stop and smell the roses you may actually see what an Au-some God we have. Thank the Lord He is not a parent to us as we are to our kids on the spectrum. Check this out, in Jonah 4:2 we have great description of God’s attributes: gracious, merciful, slow to anger, of great kindness… When you study the whole book of Jonah you will see what I mean by God’s parenting and unbelievable love for a difficult child, a rebel who runs away, covers his ears when being asked to do a task and finally getting pouty and angry with God because He did not react to his dramatic performance (Jonah said he’d rather be dead for not getting his way, than to live and see God sparing his enemies).  And what do we do when our kid acts more like a monkey on the loose than a little well groomed boy who reads Tolstoy to sleep and plays Mozart recital on the weekends? Well… I know most of Autism parents who go to work and deal with stress there, come home and deal with a different kind of madness, tend to be a little less gracious and slow to anger, hahaha. Am I describing you too? I know though that patience and love work a lot better than losing temper and reacting to a naughty behavior (by screaming, pouting, being melodramatic etc).  Michael responds to love and calmness by showing his love back and being more affectionate. Sure there will be days when he’ll drive us all crazy but I see more light at the end of this tunnel. The way he holds my face and puts his cheek to mine, the way he cuddles with his daddy, like a little cub on a lion king or that huge smile when his baby sister is chasing him around our dining table… I know there is God; and He IS good! Summing up, Autism is nobody’s first choice but we were given an opportunity to practice God’s attributes while raising our monkeys on the loose. One step at a time… One day we’ll get there! God bless you  “Jonah”…

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