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.
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.
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!
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
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.
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.
Today is a special day. Five years ago today, my sweet Xandra decided to make a change in her life.
She told us that she wanted to talk to us. We knew she’d been struggling for years with depression and anxiety.
It’s hard not to when your sister was diagnosed with cancer, your baby brother was born, your brothers have autism and you’re unsure how to deal with it all. You don’t know if you should bear the weight of everything because your mom and dad are overwhelmed. You don’t want to burden them any more, but you still have needs.
Xani told us that she’d been cutting for a year. That she’d been using this self-harm as a way to cope and alleviate the emotional/mental stress that she had been feeling. She showed us her arms and her legs. She wanted help to stop cutting and knew she couldn’t do it alone.
I was in shock.
She was so badly wounded. Her physical body was a outward representation of how wounded and how much pain she felt internally.
As a mom, it’s a horrible place to be in. To try to hold it together and be loving and compassionate and understanding.
To offer unconditional love and acceptance to the hurting person in front of you, while at the same time feeling absolute helplessness to know how to move forward.
Wondering how to get your child help, to give your child help.
Feeling terrifying rage at the person who mutilated and hurt your child, all the while knowing that it was YOUR child who did this to themselves. Knowing that they must have felt unimaginable emotional and mental pain to have even considered this as an option.
The dichotomy of emotions was huge.
I’d love to say that we had a well thought out game plan. That we rocked her recovery. But the the truth is……this was Xani’s journey.
She determined that she didn’t like where she at and that something needed to change. She reached out for help. She was open about the pain she had been and was currently experiencing. She recognized and identified the harmful things she was doing to cope with and escape her pain. She chose to walk away from those harmful coping mechanisms. Did she struggle on her road to recovery. Absolutely! But she reached out for relationship and community when she felt tempted to cut. When she felt the pain and stress rising up internally – instead of hiding and coping on her own, she reached out. She brought her feelings out into the open and allowed us to walk with her.
We……..we were there. We were available….to love, to accept, to champion, to talk, to just BE there.
Today, I’m SO VERY thankful.
I’m thankful for so many things. I’m thankful for this incredible woman that I have the honour to call my daughter. I’m thankful for courage and her strength and her vulnerability. I’m thankful to be on this side of this journey. I’m thankful for the perspective that this journey gave me. I’m thankful for the opportunity to love and accept. I’m thankful for the knowledge that we as people experience pain and look for ways to treat the pain and cope; often how we “cope” is in unhealthy ways….but that doesn’t make us bad or unloveable or unworthy; it just makes us human.
We are all worthy of love and acceptance; not in spite of who we are, but because of who we are.
ps. I have Xani’s permission to share about her journey. But I’ve also shared my perspective of it because this is my life, my journey and my perspective.
There’s something so rhythmic and therapeutic about knitting. When you hit a groove and it’s just stitch after stitch, creating something. When you see the project grow and take shape. It’s an incredible feeling.
My grandma taught me how to knit when I was 9,10,11……somewhere in there. I remember watching her knit and thinking it seemed so complicated and then she taught me how to knit and helped me knit my very own Condo Sweater. It looked similar to this….and was the perfect pink/peach shade.
I was SO proud to knit my own sweater, especially because it was a popular style back then.
I knit off and on over the years but really started to pick it back up about 10 years ago.
It’s definitely a therapeutic experience for me, now.
So today, I’m so thankful that my grandma taught me to knit so many years ago and I’m thankful that I have ways to de-stress and relax.