But he seems so high functioning . . .

"He must be very high functioning"

"I didn't realize he was autistic"

"Oh, I forgot"

Some people may think these are things that would warm a Mama's heart. 

Evidence that the appointments, the therapy, the research, the tears, the struggle was all worth it as your little one was meeting societies norms.

After all,  what Mama doesn't  feel their heart yearn to see the little one succeed after so many struggles.

I guess I'm one of the odd ones. For every little leap of  joy my heart makes as my little guy makes  his steps forward I'm painfully aware of all the little steps happening behind the scenes, to the side, and turn us all around as we try to navigate the craziness of our son's journey with autism.  I'm aware of the meltdowns, the pain, the confusion, and the fear my little one faces in a world that is always on the go and overloading his brain with stimuli it wasn't built to naturally process.  I'm aware of  the hasty retreats to quiet, the calming down, the sensory supports, and the tears from when the effort of fitting  in with the demands of the world become too much.

With that  awareness comes sadness and concern for what my son may face because he seems  "so high functioning"

When people think of autism they think of the extremes. The child who's non-verbal and lives in their own world or the individual who lives no differently than a neurotypical peer.

But autism isn't necessarily a condition of extremes. Autism is a spectrum and one  case does not necessarily fall on the spectrum the same way as another (This comic is an awesome introduction). Our little one  can be quit the talker, laughing and yelling and having fun. However, external noise,   sensory input, and transitions can all throw him into a meltdown which is why I've become a big fan of online shopping. A large portion of his speech falls under the category of echolalia  with his relying on memorized phrases that will come out at random times and heaven help the person who doesn't know the script.

I'm honestly  thankful that people see so many sides to our little guy: his love  for music, his manners and compassion, his smile, his energy but I worry that by forgetting his diagnosis they actually do him a  disservice. By recognizing his autism you don't have to label my little guy that's a  personal choice but you do have to recognize that he may interact  differently and need different supports to reach his full, untapped potential. By denying his  diagnosis he's also denied that support and left, with us, to face the  consequences of circumstances that expect him to act in situations where he is at a  deficit. 

So what does this Mama's heart hope for?

I hope one day, instead of the "I forgot's" and the minimizing comments it becomes more common to hear "how can  we help him continue to succeed"

Are we playing yet?

Sometimes therapy gets confusing especially, it seems, when it involved younger children and if there's one thing I'm learning in this journey it's that our "big boy" qualifies as a young child.

Which is a mixed bag with autism. On one hand, there seems to be this wall of disbelief that I have to deconstruct when dealing with many of the initial agencies I was told to contact, unbelieving that our son could possibly have a diagnosis just months after his 2nd birthday. This has been extremely disheartening given the overwhelming support and awareness towards early diagnosis and intervention. On the other hand, the support we have found, including some really incredible CDAs (communicative disorder assistants) and OTs (Occupational therapists) who work exceptionally hard to introduce strategies that can be fun and productive for our son and we're starting to see a difference.

J is becoming more vocal in his babbling and has added almost half a dozen words to his vocabulary (doubling it depending on who you ask), he understands more, and we're seeing improvements in our life skills throughout the day.

The hard part for me is finding the balance. Even though the strategies are set within the context of play, there are days when both J and I are fully aware that what we are working on isn't a game or even necessarily fun, it's work and it's hard, frustrating, and possibly the last thing on earth either one of us wants to be doing but it needs done.

When therapy and play share a fuzzy boundary though over analysis kicks in: have we played enough today, has it all be strategies, did we have fun, have we practiced fine motor today/this week, am I rushing too much for strategies?  

The list goes on because the boundaries are close, this road is new, and everyone involved is human.

It's hard because the mom in me wants him to succeed - learning and growing as himself  and in our family. The tired human wants progress - less behaviours, more communication and less frustration.

We don't like to see our children suffer if there's something we can do -therapy is something we do and it's good, it works, and it can change lives given time and effort.

sometimes we need that balance, the need to push guilt away and recognize the value if just being, without fearing schedules, timelines, and aging out of assistance too soon.

Even though it's not mentioned on assessments, intakes, or forms it's still important, at the end of the day, not to measure how many minutes were spent practicing scissors (although we are desperately behind on that) but does J feel loved today.

Sometimes playtime needs to be playtime and maybe this Mama can benefit from that too.

Dear CDA

Dear CDA's

You are the most recent part of the alphabet we've met since travelling in our new reality and I feel like I owe you an apology.

I never like to be one who overstays my welcome (honest, my anxiety issues actually have me understay my welcome unless I really trust you) but last week I found myself staying for well over an hour at the drop-in while you played with my oldest.

I realize that the two families after us had cancelled. Instead of dealing with us you could have been chatting, catching up on backlogged work, or maybe even sneaking in some Facebook because, hey, we're all human.

But, you took the time.

You let this weary Mama sit for an hour and play with my baby. You let me prattle on aimlessly about my sons. You let me talk about things we've tried, things we've learned, and things we're stilling grasping to find solutions for. You let me watch while you "reinforced strategies."
The most important thing, though, you made my son the center of your world for an hour, you played with him so enthusiastically that he absolutely cackled with laughter for the first time in that office. You made him smile as he worked on skills well we got to relax as a family and not stress where the line is drawn between therapy and play. You let my little boy be a little boy while I was allowed the gift of watching, knowing you were just as familiar and comfortable with any behaviours as we could be.

For an hour you gave us the gift of a reprieve, a chance to be a family in the whirlwind, eating pizza and laughing about nothing and everything.

Thank you,

It's beginning to look a lot

It's beginning to look a lot like . . . paperwork.

Referral paperwork, official doctors letters and assessments, and more information to read through(conveniently added to an entire tote of paperwork I've yet to find a cup of tea large enough to motivate me to begin reading).

I'm not ashamed to admit I've dug out the Christmas carols to help. I'm one of those weird people who gets positively giddy to hear a carol around (Canadian) Thanksgiving and, as an added bonus, Christmas songs make my almost 4 month old break out into large, toothless grins. Who wouldn't want to see that while facing down the mountain.

I realize the importance of getting into things quickly but they honestly need to make a "filling out medical paperwork for your child" for dummies book. I think two of the forms they sent me from two different offices yesterday are identical and are supposed to be shipped to two different cities.

I applaud those who have come before, I think of my former babysitter, a beautiful spirit of a woman who has a daughter on the spectrum and battles her own health concerns, she's a warrior mama not only ensuring her daughter gets care but helping make things better for the future through fundraisers and awareness.

I think of another mama who's faced numerous battles while helping her little one receive the best quality of life he can while facing a condition I had never even heard of before. That mama works tirelessly (although I know some days she must feel bone numbingly tired) and the smile that her little man has shows that she's doing something right.

I'm grateful for the fact we live in a country where there are opportunities for my son to thrive, grow, and pursue whatever dreams his heart will grow over the next few years.
Through my time trying to raise awareness with Reece's Rainbow I'm painfully aware of how little it can take to send a child into a life without a future. This is why I support RR, to help give some of these kids the chance for a future, the same chance my own son has been afforded simply by where he was born.

Angel Tree starts in less than 3 weeks and through a wonderful set of circumstances, I now have a new angel to root for (I'll explain that in her intro post as soon as I can).

In the meantime, I'm going to load up the Christmas playlist and see if I can rustle up another cup of tea.

Venturing out

I've never been a "crowd" person

I wear my introvert badge with pride and still chuckle a bit too much when a certain Doctor Who episode references Hermits United.

I know at least part of that comes from my EDS. Crowds are not a great place to be when your joints are wibbly, your body hurts, and your anxiety keeps telling you that people are sucking out the oxygen. That said, I love one-on-one or meeting with a small group of people. Give me a shared topic of interest and I will talk your ear off. Everybody, even introverts, need a chance to be out in community, it's a fundamental part of who we are as human beings.

Now, however, going out has a new complication: a smiley little 4 month old and our firecracker who's 2 and just happens to have ASD.

Our son's ASD has left him fairly speech delayed as well as unaware of most boundaries add in the fact that he's tall for his age and we have a perfect recipe for frustration as most people simply see a disobedient free spirited boy who "should know better" or a lazy parent. UGH!

It honestly feel like a rock and a hard place quandary - don't explain and people make assumptions (let's face it people act on assumptions and interact differently as a result) or explain and chance people not making the effort to see the person behind the label.

Having to deal with this myself I usually go with the latter risk but it still feels like a lose-lose scenario. Which is why I'm grateful on those occasions when the unexpected occurs.

We recently started attending a new church who I had been associated with through their day camp many moons ago (I don't actually remember the year but anything pre-kids feels like it was many moons ago :P ).  We arrived early, let our little guy walk through the entire building while only the first volunteers were running through setup, and made sure to find his teacher before class started. I started into my usually explanation with speech delays, possible ASD, etc . . . only for the teacher to smile and tell me she understood perfectly her son had been there too.

There's power in a smile. There's power in a kind word, a nod of acceptance, or when acceptable a recognition of similar journeys. They're all connectors, reminders that we're not alone on this weird journey called life, an invitation back into community when you feel isolated and alienated.

I'm grateful that, although new to this journey, I've already found a few instances where community has reached out and invited me in when life and assumptions seemed to push me out.

Community takes risk but it's a risk worth taking for both parties, something I definitely need to remember.

A new normal

I've been told I worry too much about a lot of things since I began my journey with PPA (Post-partum anxiety) this week one of my concerns found some footing.

Our oldest son has officially been diagnosed with moderate autism.

It's funny how the things you expect can still hit you hard.

He's still our peanut and nothing's changed other than a few new words on his medical file but it's the changed hopes and dreams that create the pain and grief in this initial time of transition.

I always suspected autism could be part of our lives. In the middle of the autism debates that rage online, the genetic argument makes the most sense to me and autism already runs in our family. So when our active, creative fireball of a son fell further behind in speech, started shying away from textures, and started sensory behaviours day in and day out, this Mama started making calls.

It's funny how everyone has an opinion. I've been told that "boys just talk late," "boys are always active," "boys like to deconstruct things," "boys have tempers."  Here's the thing that may be true to degrees in some kids regardless of gender each kid is different but Mama's and Daddy's have instincts and mine screamed it's better to be screened early, patted on the head, and told you're overprotective then miss something that could be helped - and with autism early diagnosis and intervention is key.

So here we start on a new adventure and oddly enough the experts are right. Our son hasn't changed a bit (as evidenced by the fact he just jumped off the couch again and started running laps through our kitchen) but as parents we are changing. We're learning how to work with our son where he is, we're trying to learn to see the world through his eyes and help him navigate a world that can be very different for him, and we're learning what this new norm means for our crazy little family.

A diagnosis isn't the end of the world, and grieving isn't bad (I'd argue necessary but that's an entirely other post), in fact, sometimes a diagnosis frees you to leave the expectations of those around you and start embracing the uniqueness that's always been there.