Autism parenting is a 24/7 job

April 13th, 2013:  Autism parenting is a 24/7 job

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”…

Not more than you can handle

April 11, 2013 Not more than you can handle 

Crazy Thursday… How is it that kids seem to have 2 (or more) personalities? They can be angels at school and cheeky creatures at home.  That’s common with all kids, not only the ones on the spectrum. But “our” kids come up with the most bizarre ways of trying to get our attention, don’t they! “Why don’t we grab something valuable and make parents chase us! To spice things up, let’s flush it in the toilet before they catch us and see their veins pop! “

Today my iPhone ended up in the toilet AGAIN! A few months back I lost my other 2 smartphones (submerged in a hot coffee and tea) and Mark’s iPhone was tragically boiled in a hot car after being previously flushed in the toilet. We lost the count how many devices had been destroyed already.  We could easily lose our temper (which we did the first few times) and teach Michael a lesson by old fashioned spanking and scolding or making him realize he did something wrong. As we stroll along this autism road we learn to handle situations in a different way. We know scolding and spanking may work short term but then it becomes some kind of weird reinforcement - he identifies his naughty behaviors with getting our attention, even if it means spanking or being put for timeout. It is still new to us, so we try to apply what we learn on daily basis. Although I got attached to my iPhone and seeing it in the toilet hurt a lot, I did my best not to show any emotions. I could tell he was disappointed I didn’t freak out like I’d normally do in such circumstances. But I am almost positive that because of the way we reacted this evening, he won’t be interested in doing it again (fingers crossed!!!). He will try to find other ways, hopefully not involving any expensive equipment in our house, to get some attention – he already knows that being an affectionate charmer works.

I also know that having a daily schedule helps to keep calm – we’re still working on it. But I guess I need one for myself even more to keep me organized.  It’s hard to be an Autism parent when you have to work (often overtime) and having other responsibilities and obligations at the same time. We try to spend every free moment with our kids – breakfast and our time on the way to school, then lunchtime and evenings.  Is it always productive time? Not at all but surely it is precious. Michael knows his “routine” with us. He knows to expect the unexpected – he is as crazy as we are after all… Would I want him to be “healed” from autism? Sure, without a doubt! That’s why we’re trying to do whatever humanly possible to help our boy (from biomedical treatment, through ABA therapies and daily prayers). But if God’s will for Michael is to never speak we will accept it. Because we know our Father knows what’s best for us. It’s like our earthly parents and kids… A kid is asking and begging to let him eat a bag of candies before dinner. Would a good parent answer kid’s plea the way he was expecting it to be answered? Of course not!  A loving parent would want his child to get the solid nutrients from dinner first and then a small portion of candy for desert, right? How much more our Heavenly Father wants our best? And yes, sometimes it may seem like He doesn’t hear our prayers as we don’t see things happen the way we’d want them to happen but I know for sure He is looking down in love and answering our prayers in a way that would benefit us a lot more, according to His divine will. I choose to believe that since He is my creator, my God, my Father in Heaven and my best friend, He will send me trials that His Grace can cover.

I had a very good talk with a friend who reminded me of a great wisdom he heard from his father: “God is giving tough situations to deal with just to those He believes can manage them”.  Basically the Lord knows what we are made of and how much we can take… In a way I do feel privileged God entrusted me with a precious soul of Mikey Joe. I pray not to fail His trust or Mikey’s for that matter.

Along Came Autism

April 4^th, 2013 Along came Autism

 

Michael’s life journey with ASD (Autism Spectrum Disorder) although unique and very special resembles many other stories of children all over the world.  He was born perfectly healthy on one Tuesday morning in the early 2007, through an emergency C-Section.  Pregnancy was just like in “What to expect when you’re expecting” J - strong nausea for the first 5 months, felt movements in the 17^th week and saw him growing, putting on weight till the day he was born.  He scored 9 in Apgar scale in the first minute after he was delivered and perfect 10 in the 5^th minute!   Our champ screamed his lungs out to let us know he was fine. What a day that was! Tears of joy, parental pride seeing his tiny body – so perfect in every angle.  His mental, physical and social development was just as expected for his age – first smiles, first laughs as reaction to our silly sneezing and studying our faces… He was sitting up on his own when he was 5 months old, walking when he was 10 months old and using few words at the age of 1. He was putting 2-word phrases (big car, green truck etc.) at the age of 18 months. He was fully vaccinated according to the local immunization schedule (gazillion shots in such short lifetime!).  He was perfectly fine, happy little guy loving to be around other people.  Alas, around his second birthday we noticed something had changed. He didn’t keep eye contact for more than a few seconds.  He stopped talking, started making “noises” instead and using hand stereotyping (drawing in the air with his index finger, staring at his hand etc.). Studying clinical psychology and children’s psychology in my university years I remembered symptoms of autism and developmental disorders.  I started having some suspicions that our son may have some mild form of ASD. Of course my family and I were in denial for a long time. Not our boy! That’s ridiculous! How many times had we heard:  “many kids, especially boys, are late talkers and Michael’s odd behaviours are due to his shyness” … Anything but the “A” word. 

But as the worrying symptoms were more obvious (he never pointed, never asked questions like other kids his age, never really engaged himself into playing with other children) we knew something was wrong. We decided to consult a speech and language therapist to help us get our boy to talk again. After several meetings with us and observing Mikey in the kindergarten, she had some shocking news for us: “Michael suffers from something that’s called Sensory Integration Disorder”. In a way we were relieved as the word Autism was not mentioned in her report. Little did we know that SID is not the only thing that he was suffering from.  As Michael’s behavior was getting more challenging with every passing week, we decided to consult another specialist. After a thorough interview with us and testing Michael’s skills we heard: “Your son has Autism and it’s a lifelong condition but with early intervention program his chances for normal life may increase”. What do you do when such news fall on you and all your hopes crumble like a chocolate chip cookie? Well… we went through “stages” of: denial, anger and frustration, huge disappointment, guilt, helplessness, sadness, depression… You name it – we were there. But then, as we saw that his therapies were slowly bringing him back to our world, engaging him more into family life again, we saw the light at the end of this dark and long tunnel. There was hope and real joy in our heart. Then there was a phase of redirecting and reshaping dreams for our family. It wasn’t easy to swallow the thought he would never play baseball or football with his daddy like other boys do or that he’d possibly never say “mama” ever again… That is the phase we often find ourselves in even now, like many other “autism parents”. It’s not getting any easier but we sure do get stronger and more equipped to be Michael’s parents, grandparents, sister, auntie, uncle etc. Where do we get this secret super power from? His name is Jesus – the real Hope for the brokenhearted!  Read more on that subject in my next post.  Stay tuned!