Thursday, February 20, 2014

A Day In Our Beautiful Life

I get told, in some form or another, almost every day that Jason and I are "amazing parents" to Sam, "especially given everything…" 

This sentence left dangling, as if most people are afraid of the word "Autism".

For what it's worth, Autism isn't contagious. You can say it around your kids and not worry that they are going to suddenly start spinning in circles…that being said, fun is contagious, and spinning in circles can be a lot of fun. ;)

I think people have a bit of a distorted version of what our lives actually look like. Maybe they see too many blogs of parents who carefully schedule out their 'intervention therapies' or who have colour coded routines on their walls.

These strategies can be extremely effective for some kids- but that's not how Sam rolls. He's always been a bit of a mellow, go with the flow, independent little guy.  He would really struggle if I tried to force more onto him than he was willing to take in at any given point.

There's a philosophy on parenting that has always resonated with us: Free Range. If we had to narrow down our 'parenting style' into just one concept, it would probably be that one (though we also ascribe to most of the principles of Attachment Parenting and Slow Parenting as well).

Basically, you can sum up our approach like this:

When given all the tools and support they need to thrive, children are exceptional at setting their own direction, pacing, and outcomes.  Respectful and loving parenting means giving children the opportunity to self-direct their learning. By focusing our parental interventions on helping them learn to overcome obstacles on their own, we inspire a genuine desire for life-long learning. 

This statement is part of our family mission statement, and a core value in how we approach both of our children's learning.

This makes us a little unusual in the world of 'Autism parents' (a term that I have been told is offensive to some Autistics, and I use here only to refer to a specific subgroup that defines themselves this way).  We do not inundate ourselves with therapies or treatment programs.

We live and let Sam live.

It works for us.

I've been asked a lot about what a day in the life of Sam, who is a 3.5 year old, mostly non-speaking, fun loving preschooler, looks like. I figured I would share a little glimpse of how our world works on a typical day.

It's Tuesday morning. Sam wakes up, usually on his own, around 7 and gets to jump on his bed for about 15 minutes before we go get him to get ready for school.  If he is still sleeping at 715am, we will wake him up so that he isn't late. We go through our toileting routine as needed.
He has two gluten-free/dairy-free waffles slathered in peanut butter waiting for him in the kitchen. He's been gfcf for over half a year now, and the improvement to his digestion, sleep, and overall quality of life has been remarkable. It definitely cured him…of a sore belly caused by allergies and intolerances. 
If Sam wants to eat in his high chair (which sometimes helps him calm his body enough to focus), we will lift him up into it. If he doesn't, we will not force him to. We will usually play a few youtube videos that make him smile to start his day of with a laugh or six. 
He eats as much or as little as he wants. He is also offered a juice box that has been "spiked" with vitamin supplements to address some deficiencies caused by his limited diet.  He is not forced to drink this juice either, but he usually does.  

After breakfast  
Sam engages himself in free play while I prepare his lunch and write in his communication book.  This usually happens upstairs. We try to limit basement play to after school hours, simply because he doesn't have enough time to fully engage in an activity down there and it can make transition more challenging. However, if Sam appears to need a sensory break, he is never denied access to his sensory room. 
Sam leaves for school at 830ish He is driven there by either my mom or I and dropped off for 9am.  At school, he does all the typical "school readiness" things: circle time, structured food time, structured play, work with the SLP, OT, PT, etc… He has specific school goals that he is working to achieve and we are extremely excited by his progress.  
I pick Sam up from school at 12pm.  He is often tired after a long morning of 'work', so we generally go straight home.  I have left out food for snack; Sam will eat when he wants, but he knows that snack stays in the kitchen. He almost always chooses to eat right away after school, but sometimes needs some extra transition time. 
We then engage in free play for the afternoon. If Sam wants to play with me, or with Charlie, he will usually stay upstairs, in the same space we are in.  If he would prefer to play alone, he will seek out a quiet place elsewhere in the house, often in his sensory room or his playroom. I understand his need for space and respect that he will let me know when he is ready to see me.  
Generally, there is no tv on during this time. However, sometimes Sam will request a Train Documentary/movie by picking one out and putting it into the dvd player. Unless there is a reason for saying no, I will almost always allow him to "watch" a movie during this time (though he spends very little time actually watching it…he seems to like the sounds the trains make as much as he likes watching them.)
There is no structured activity during this time unless I feel that Sam is in need of a particular sensory output (i.e.: water play, sensory bin, etc.) or we have a scheduled play date with a friend. This is Sam's time to just "be", and play as he sees fit. This is the time where the majority of Sam's real "learning" happens. He is kinaesthetic, and needs to "do" and "discover" things in order to learn them. This doesn't work as well if I am constantly directing his play. 
At 4pm or 5pm, Jason (Dad) will come home from work and we will serve dinner.
The real work begins after that. Following dinner time, we will often engage him in "full body immersion therapy" (also known as "swimming" at the "pool" ) and/or some "gross motor therapy" (also known as "running" at the "playground").  We try to make sure that Sam gets at least 2 hours of Physical Therapy ("physical activity") a day. We like when he engages appropriately in Occupational Therapy ("being a kid") every day.  During this time, we are actively engaged in Speech Language Therapy ("talking to our child") and encouraging him to participate in social communication and building social skills ("getting him out of the house and into the world with other kids his age"). 
As you can see, it is an extremely involved process that necessitates several professional interventionists (i.e.: zero) to make sure that Sam has a "quality of life" as closely equivalent to a neurotypical child as we can get (i.e.: "no one wants their lives to suck, not even kids with Autism").
If we couldn't go swimming because of errands or other planned activities, Sammie always comes with us. We engage in his 'therapy' on the road, in the car, and even at restaurants. He also takes a nice long bath to make up for his missed immersion therapy.  
Once we get home, it's snack time (once again, in front of his favourite videos…*gasp* for shame…) and then off to bed for around 730pm. Sam now sleeps through the night (for the most part), the biggest win of the gluten-free/dairy-free diet. 
You will note that there isn't a section dedicated to behavioural therapy.  Don't worry- we haven't forgotten about it.  Yes, there is seldom a day that goes by where angry cries and tears don't come ("temper tantrums").  This is just part and parcel of dealing with Sam's reality ("being a three year old") and we understand that intervention ("love, comfort, and respectful validation of his feelings") is needed on an ongoing basis. Sometimes, these even escalate into full blown meltdowns, at which time immediate action is required.  Most of the time, this means ensuring that Sam has a safe environment and is able to allow his body to physically manifest its overload as quickly and painlessly as possible. We provide him rules on how he is allowed to meltdown ("supports" to make sure that nothing aggravates the situation") and there are always consequences when they happen ("extra hugs/reaffirmation, and usually a juice box since having a meltdown makes him thirsty. He will also usually get extra alone time to bring himself back to baseline and we will make sure that he has access to a low-stimulation sensory environment like his sensory room.")

And that's basically it. Our schedule in a nutshell. Now, obviously, there are some deviations, but aside from school, we do not currently utilize any additional support services. We do not currently have respite (though that is one thing we are investigating) or have any additional specialized services at this time. Frankly, we haven't seen the need for it- not in a long time anyway.

Admittedly, things weren't always this easy. It took a long time to teach and train a routine like this ("to remember that 'special needs parenting' is really just 'parenting' with accommodations") and make sure that everyone ("Zita and Jason") really understood what needed to happen for their child to live a normal life ("thrive to the best of his abilities")

There were many days filled with anger and frustration in those early days. There were many disappointments, temper tantrums, and full-on meltdowns to navigate. ("Ours")  It required the patience  and understanding of a Saint, and an iron-clad willpower. ("His") But as we soon as we dried up our tears, stopped our whining, and put our adult pants on, we realized that this ("Being Sam's Parents") was exactly what we had signed up for.

That's when we all began to truly live...

And, my friends, it truly is a beautiful life. 

1 comment:

  1. This is pretty much my day with my 3.5 year old girls, with the exception of a little more TV and some iPad time. They get almost all of their services through school, though we do get some respite (if you can get it and get a good person I highly recommend it - it's how I'm able to write this comment right now) and some speech through the county. The speech therapy is mainly for my benefit, they help us incorporate what the girls are learning at school in to our home environment and teach us about pecs and aac stuff. I've always felt like parenting my girls is just parenting a little more intentionally and like you said with accommodations. reading this makes me feel a little less alone in our choice not to overload with interventions. Thank you for writing it!