The Informal Matriarchs

Is it weird that, in many ways, I wouldn’t want to trade my situation now for a situation without autism?

I know that sounds odd, I know I’d never wish autism upon a person or upon a family.  But I feel lucky to have it in my life.  There’s so much beauty in autism that I’d never know.  Autism makes me a better person.

Without autism I wouldn’t be aware of my own issues that resemble it,  I wouldn’t be half as patient, I wouldn’t be nearly as understanding, I would be more judgmental, I would be less accepting of people with special needs.

The thought of someone telling me about their child’s special need and me not being able to understand how that parent feels makes me sad.  I can deeply understand the pain parents go through.  I am a broken broken person but there’s wisdom in brokenness…in some twisted way.

I’ve walked on eggshells for Silas since the moment he was born, he’s incredibly hard to please in many ways but when the day is over and I think about my son, I just feel lucky.  Silas is…..light.

No I don’t get to have regular conversations with him as most parents get to have with their four year old boy.  He’s not into dinosaurs or trucks or cars or rocks and dirt.  He’s into numbers and letters and what time it is.  He’s into concrete things.  Often you can hear him say something like “If you sit on Cleo, she will bark!” or “If I’m happy I will smile!”.  Concrete statements, predictable.  I hear the time of day 100 times a day, we chat about what time we’ll do what activity.  He wants to talk about what month it is and what’s going to happen on Thursday.  It’s so so so so…different.  But it’s special, and it’s mine.

So many times he’s out of line in the day and I have to talk him down.  My days are FULL of tears.  My days are also FULL of joy.  His smile warms my heart so much that I can hardly stand it.  My days are full of celebrations.  I get to celebrate newness every single day because every single day he does something new and amazing.  He’s the smartest person I know and he’s only four.  We potty trained him last weekend and he took to it like a champion.  He just GETS things.  We go through 10 pages of his grade 1 math book in about 15 minutes.  He’s unbelievable.

The problem is, when he’s melting down I have a list in my head of about 10 things that I could have done better to prevent the melt down.  Fitting into his world is almost as hard as him fitting into mine.

No I don’t wish autism on anyone.  No I’m not “happy” my son has this disorder.  But now it’s said and done,  now the smoke has cleared, now I understand him…I can’t help but feel thankful, lucky, blessed.

I missed autism awareness month, which was April.  I intended on blogging about it but I kept forgetting it.  Better late than never though eh??  Did I just say “eh”?

Anywho.  In leu of autism awareness month I thought I should blog about what you need to be aware about when it comes to autism.  Simple no?

• Autism is NOT a disease.  It is a disorder.  My child isn’t diseased and I will punch you in the throat if you say otherwise.
• People with autism are not autistic.  Just as much as people with cancer aren’t cancerous.  I cringe every time someone tells me about so and so’s “autistic kid”.  They’re people, humans and not some weird human sub-type.
• People with autism don’t actually want to be alone.  They may tend to seek out solitude because they are having a sensory overload or don’t know how to relate to the people they are around but they by no means prefer to be away from people.  They just don’t necessarily know HOW to be around people.
• Autism is nothing to be ashamed of.  I’ve always wanted to have children who stood against the crowd and I sure got one.  It is a blessing to be, or be around someone who has a different world view.  It is not to be shamed, shunned or swept under the rug.
• People with autism may not always speak but cognitively they are “there”.  They know what you’re saying and if/when you’re talking about them in front of them.  They understand things, sometimes, on a much deeper level that you ever could.  Please don’t talk about them when they’re in the room.
• People with autism can melt down at the drop of a hat.  In public, never assume a parent has bad parenting skills based on how their child is acting.  I am that mother in the grocery store with the screaming child and it’s not my fault, nor is it his fault.  Instead give an understanding smile or even ask if they need a hand!!  Sometimes they might have another child who needs holding while they deal with the situation .
• Parents of children with autism often feel very secluded.  Their world revolves around appointments and therapy.  They can’t just go and be at a playgroup as their child is likely to melt down or harm another child.  They might not have the energy to even go.  Life can be extremely lonely for an autism parent.
• The average lifetime caring cost for a person with autism is over 3 million dollars.  Not all of this comes out of our pockets, Silas has cost the government well over 100k by now.  A lot DOES need to come out of our pockets because the government wont cover everything.  So if you notice me in last years capris…you know why.  Also, I have a bunch of fundraiser ideas in my head, if you have any or want to help out with one somehow then please let me know.
• Finally, people with autism are a blessing to our planet.  With 1 in every 95 children being diagnosed somewhere on the spectrum, you’re likely to know someone with autism yourself.  Don’t treat them as something to be fixed.  See the amazing humanity in them, see their gifts and mostly love them the very best you can because these people might just end up changing the world.

10 things every child with autism wishes you knew

When I look at my dear boy Silas, whether he’s happy or sad, all I see is…Silas.  I don’t see autism.  I don’t look at him through that filter.

It hasn’t been a conscious choice to see him that way.  It’s just how it has happened.  And I think it is very beneficial to Silas but also somewhat detrimental.

He’s never treated like there’s something wrong with him but he also has the very same expectations on him as he would have as “typical” child.  He doesn’t have to look “normal” but we expect he treat others kindly.  That’s that hardest part for him.  And it’s not always fair.

I wish, though, that I could tell my frustration levels to see Silas through an autism filter.  How quickly I forget the torment he must be experiencing when he melts down.  His sensory systems are overloading and I have no idea what that feels like and I sometimes have a VERY hard time feeling patient about it.  Especially lately.

Part of me wonders if I’m in denial about it.  But I’ve gone through the motions, I’ve mourned, I’ve gotten his therapy in place, I feel like I’ve read every single book on the market about autism.  I can’t be in denial.  So I try sometimes, to look at him through the autism filter and all I feel is sadness for him, for me, for everything.

I don’t need those feelings.  It makes no sense to label him.  He has trouble learning some things but he’s also forced to be in a world that’s not laid out for his brain type.

So I’ll just continue to look at him and just see Silas.  See that amazing face that’s not only handsome but lights up a room whenever it smiles.  I see that twinkle in his eye that only kids with autism can have.  Those big, round, wise eyes that seem to look straight into your soul.  I see a deeply valued and extremely important person who is lucky enough to be able to see things from a different point of view.  I see complete despair and confusion and sadness that he cannot control, no matter how hard he tries.  I see beauty at it’s absolute perfection.  I see no autism, I see no label, I see nothing wrong.  He’s not something to be fixed.

Unfortunately our world wont change for him, so it’s him who’s going to have to change.  Hopefully you’ll choose to see him the same way that I do so this world will feel a bit brighter for him.