World Autism Day

Yesterday was World Autism Day. Some people like to Light it up Blue. Some want it Red Instead. I want people to be aware, accepting and appreciative of neurological differences, of all differences.

I get that not everyone likes everyone else. Nor should they have to.

BUT……when people (like but not limited to, my children) are mocked, disregarded, and excluded because “they are different“, we as a society need awareness.

My child was recently in a situation where he was trying to “fit in” with peers. Instead of acceptance, these peers were obviously annoyed and angry with his socially awkward attempts. These weren’t bad kids, but when you don’t know or understand; there is need for awareness. When you reject people because they are different or awkward; there is a need for acceptance. It’s especially difficult because his “disability” isn’t physically visible at first glance.

Invisible Disabilities are disabilities that are not often immediately apparent. These are things like (but not limited to) vision, audio or neurological differences. You can’t see them like a visible disability, like (but not limited to) a missing limb or paralysis.

As a society, we (often) have more grace for people with visible disabilities. We can give them understanding because we can see what they might struggle with. Too often we have little to no patience for those people with invisible disabilities. They are often judged to be weird or even stupid; and others often get frustrated when they do things that are deemed to be outside of “typical behaviours.”

It’s really not hard to kind. It’s not a hardship to be compassionate and understanding. It’s not difficult to be respectful of other human beings, no matter what their differences are.

I adore what Chris Ulmer is doing to normalize the diversity of the Human Condition with his organization “SBSK”. You can check his work out at

Youtube

Facebook

and on their Website

They say,

“We believe that when you take the time to hear someone’s story
and view life from their perspective, you learn and grow as a human.”

We need to recognize that diversity is beautiful and that every single person has something to give. Every person has value and worth. When we can take the time to look beyond the disability and to really know them then we will see their value and worth and appreciate what they bring into our world.

Superpowers

Lets start Autism Awareness, Acceptance and Appreciation Month with a video from my sweet boy, Siah. It’s always best to let the experts talk about what they know best. Some of this is very broad and general information regaarding autism and some is very specific to Josiah.

This was a Speech that Siah shared with his school for Speechfest one year. He did such a fabulous job and was so well received by our school community.

Every incredible person with Autism is unique and wonderful, just like you and me. We all have strengths and things that we can work on. We all have interests and dislikes. We all desire love, acceptance, respect; basically, to be treated like human beings.

In our family, we are very open about who we are, the challenges we face and the strengths we have. We are different, but not less.

What are YOUR Superpowers?

I believe that mine include compassion, kindness and understanding.

Fulfilled

I can’t believe that April is here already. This month has gone faster than I expected.

This weekend has been a busy one and I’m tired. Today I sat on my front deck, in the sun, listened to the silence and it was glorious.

I’ve enjoyed this month of gratitude. Being present and aware of what’s happening around me. Looking for the good even when things are tough. It’s been a good 31 days and I’m looking forward to continuing my gratitude practise but I probably won’t post daily about my gratitude.

Even though this month is up, I’ve really enjoyed posting. I used to post daily; back in my other life….when my big kids were little, and before the decade of trauma.

April is Autism Awareness Month. I recently saw something that referenced Autism Awareness, Acceptance and Appreciation.

I love the idea of growth and movement in our understanding of Autism.

There is definitely a need to bring awareness. It is so important that we accept diversity and the very things that make people special and unique. It’s important to not try and force people to conform to our understanding of typical and acceptable behaviour. But moving beyond awareness and acceptance, when you can begin to appreciate the beauty that individuality brings to our world; when you can see people’s strengths and not just focus on their challenges, that when we really start to “see” people. That’s an incredible thing.

So, I’m going to continue posting. I dunno if it will be everyday but I’ll figure something out.

I sure do appreciate you coming along for the ride. Don’t hesitate to comment or ask a question, if you have one. There are no stupid questions.

I hope you’ve enjoyed this past month of gratitude and will continue to enjoy April’s posting.

I’m so very thankful for you!

Advocacy

Today, I was so grateful to be able to spend the day with an incredible group of people who are passionate about inclusion and equitable access to education.

I cannot believe that I only got 2 pictures throughout the whole day.

We started the day off listening to Shelley Moore. She was fabulous, hilarious, insightful and inspiring. We paused for lunch and spent some time chatting with others who are passionate about advocacy and inclusion.

After lunch there were some incredible breakout sessions; and I attended one about IEP’s and Language and another about Safety Plans. After that, there was a fabulous youth panel made up of neuro-diverse youth and it was fabulous to hear the insight of these incredible kids (mine being one of them.)

Being within a group of like minded people is amazing…..and it’s what I am so thankful for today.

What were you thankful for?

Blessed

We are so blessed.

I got a message today that someone wanted to buy dinner for us. It was totally unexpected and such a blessing.

We LOVE sushi and our “dinner angels” blessed us with sushi delivered to our door. It was extravagant and made us feel SO VERY SPECIAL!

Today I am thankful for unexpected blessings, for not having to cook dinner, for not having to clean up dinner mess, for sushi and especially for our “dinner angels”. It was such a lovely blessing and we feel so very special!

Thank you!

Spring

I’m absolutely loving the sunshine whenever it peeks out at us.

I love the sun. I even love the snow. I just struggle with the rain. So to have had all the sunshine we have had recently had been such a blessing.

Today, in honour of spring, I painted my toenails a bright, cheery, turquoise. I’m SO thankful for these hints and reminders of that glorious thing we call summer.

I’m one of those people who don’t ever complain in the summer. Bring on the heat, the hotter, the better.

I can’t wait for those hot days! So, today I am so very thankful for Spring and the warmth and light it heralds.

What are you thankful for?

Daily Photos

Daily Photos

My sweet girl @essentially_tattoos has launched her very own Etsy shop with greeting cards. She has created a line of cards that are specifically for and from “Spoonies”. If you don’t know what that references, count yourself blessed. If you do, know you’re not alone. Go check her shop out “Gelica Joy” on Etsy! Her and I could not approach “creating” and “art” from a more different viewpoint but we both live and breathe creativity as if it was air. I’m so proud of you sweet girl! #spoonie #aspie #survivor #gelicajoy #etsy #greetingcards #spooniegreetingcards
Posted by Intagrate Lite

Facing It Head On

I’m having a hard time settling down tonight.

We had an appointment today regarding one of our kids. This is not our first time having an appointment like this but I don’t think they get any easier.

As parents, we want to see the best in our kids. We talk to other parents about their achievements. A typical parent may brag about their child being on the honour roll or a sports club their child was invited to be a part of. They may share about the recognition their child received in Cadets or Guides.

Special needs parents want to share about the wonders of our children, too. But our pride may be in the fact that our child spoke at 8 years old, or learned to tie their shoe laces at 14, or shared a beloved and sacred item with a sibling. We are ecstatic (and often terrified) when they get invited to a birthday party or for a play date .

Would you even consider bragging that your child got invited to a birthday party or for a play date? It’s ok if that would never cross your mind, it just means that we function in different circles, on this great earth of ours.

Here’s something else that’s different…..

Parents of typical kids will probably never experience this situation, and if that is you, count yourself blessed. It’s a special kind of hell to go to an appointment and speak and share about all the ways your child is missing the mark. To spend a couple of hours talking “down” about your child. To fill in form, after form, after form, about all the things your child can’t do, and specifically doesn’t do, well.

You almost have to disassociate from yourself to do this. But you MUST do this, in order to get your child the supports they need.

So you do it, regardless of the fact that it goes against every parental instinct to cherish and protect. You dig out all the dirt and ugliness; and you lay it out there for all to see.

It’s hard because it’s not like you don’t know that there are things your child struggles with, but when you put it all together in one pile, at one time…..it’s overwhelming; and frankly, soul crushing.

That pile of crap in that picture up above……it’s all the stuff I swept out from under my couch. Some of it is garbage. Some of it is useful. Some is necessary. Some was misplaced.

It’s easier to know it’s there; but to only focus on what’s in front of you. If the room looks okay, then it’s good, right?

Its when you sweep it all out into the open that you are faced with a challenge. You can start sorting and do the work and effort that’s required to place things in order. You can throw it all out. Or You can sweep it back under.

You can’t throw “this situation” out or throw “this” away; and ignoring it doesn’t work out well for anyone. There really is only one appropriate option and that’s to put in the time and effort and to “sort things out”. As a parent of special needs children, those are two things that I have the smallest reserves of……time and energy!

But I will get up tomorrow and try to figure out what the next steps are because that is what you do when you love someone with all your heart and soul. When your goal is to help them succeed and be the very best “them” that they can be; you do whatever you can do.

If you have children with disabilities, you’re either nodding in agreement or horrified at what you may soon be asked to do.

If you don’t have children with disabilities, know that your friends, acquaintances, those parents……..they go through things that are tough. They do things that no parent ever wants to do; and they do it so they can afford their child the best in life. But those parents, they are tired. They are often overwhelmed. They may feel like they’ve betrayed the wonder and beauty of their child, in the name of “support”. The hardest part is that that there are no guarantees. You may not get the supports that are needed and then it feels like it was all for nothing; and that’s REALLY tough.

Parents of typical kids, I’m sharing so you can know…….so you can be aware…..so you can show compassion.

Not pity. Not ever pity.

But awareness, seeking to understand, and compassion are huge gifts that you can give us parents of kids with differences.

Take Aways…….

  • Be aware
  • Seek to understand
  • Have compassion
  • Be kind – Always Be kind!

Grace

I had plans to post every day this month. I knew that Spring Break was the last two weeks of the month and figured that if a practise of gratitude was ever called for, it would be during these two weeks.

While we’ve done okay with the chaos and stress of life, there have definitely been moments and yesterday was probably the toughest day, so far.

It’s nothing crazy. Sometimes, one of my boys gets “stuck” in a certain mindset or fixated on a specific thing; and the other boy gets triggered by the fixation. It means that we get stuck in a loop of triggering and fixation. Trying to help 2 kids to regulate in different ways, for different reasons, while attempting to stay regulated myself, is difficult if not near impossible.

By the end of the day, I was going to try and post and then I looked at the time and it was 12:02am.

Immediately, my brain went into overdrive. I could post and back date it. Or maybe I could post twice but then that wouldn’t be posting every day.

I had about 20 seconds of panic before I said to myself,

“I don’t have to be perfect. It’s not a failure to miss posting for one day. You still have many things to be thankful for. Nothing is wrecked. You don’t owe anyone, anything. You are good enough. It’s okay to just let this one go.”

And so I did!

I rolled over, turned out the light and went to sleep.

In the past, I’d have fixated on this mistake, this error, this imperfection……but I want to live a life where I’m not trapped by perfection. It doesn’t mean that I don’t want to try and do a good job or to try my best. I want to afford myself grace and mercy. I want to live a life where I’m not my enemy, instead I am my champion.

That may sound self-centered but I believe it has more to do with love. I want to love myself and to treat myself with respect. I try to live a life where I treat others with love, compassion, understanding, grace and mercy. I believe that I am worthy of those same things. But in the past, I’ve been too hard on myself. I’ve placed unreal expectations of perfection on myself and berated myself when I couldn’t live up to those expectations.

It’s amazing to see that although old mindsets are still there, that I’m spending less time stuck in them. That I’m able to move beyond self loathing and into grace.

Today I’m thankful for opportunities to grow, to have grace for myself. I’m thankful to see forward movement in an area that I was previous stuck in. So even though yesterday was a tougher day and it resulted in my not posting, I’m still thankful……SO very thankful for grace and mercy and kindness and compassion.

What are you thankful for today?