Today I learned of a friend’s passing. He was very young and leaves behind a beautiful wife and two amazing autistic children. My heart feels completely saddened for this family. A husband and a father is now gone. Dynamics have changed…so unexpectedly.
We have all heard the phrases, “Live life like it’s your last day on earth.” “Life is too short.”
But do you? Really?
Those statements really hit you when an accident happens, and it seems unreal. Say what you want to say to your loved ones. Make time..
Quality time to spend with friends and family.
Love a little more. Hug a little tighter. Make connections. Keep in touch. Just simply BE happy. Realize and be grateful for the blessings in life.
We don’t know when our last moments will be.
In honor of Bill Maglares. You are in heaven now watching over your family. They will always have their own personal angel…
I am really getting used to just doing our own thing wherever we are. Sometimes being self-conscious will still creep up on me, but mostly, I OWN IT. As Jasan gets older, I appreciate who he is becoming even more. I keep reminding myself to step back and look at the big picture. I may not totally understand everything now. But, I picture myself looking back at his life when he is in his twenties and it all making sense. Why does he have an obsession with appliances? What is it about fahrenheit and barometric pressure that makes him smile so much? Why does my son prefer Best Buy over Toys R Us? I don’t know, but I’m his biggest cheerleader.
We hung out at good old Best Buy for quite awhile today.
Refrigerators were a hit.
There will always be the beloved washing machine.
And now, the most recent addition to fun spots to go in Best Buy? The printer aisle. We had a lot of fun with sound effects and powering multiple different models on and off.
On a BUSY Saturday afternoon was I spotted taking pictures of my son LOVING on appliances from many WEIRD angles?
Did I care?
Did a million Best Buy employees come ask us if we needed help?
Did they look at me weird when I said my son likes to hang out by the washing machines and we are just pushing buttons and listening to sounds?
I feel like my “Following Jasan” project has been so neglected. I’ve missed writing and taking photos, but sometimes life happens and you just need to try to stay positive and get by. That’s been our situation lately. First year of full day school + a new job for mama + new routine + early as heck bedtime for Jasan = overwhelm and not enough hours in the day.
I don’t want this to sound like complaining; it’s not meant to. It’s a realization of a lot going on and how I have handled it. Umm…I haven’t handled it as smoothly as I assumed I would.
Due to the nature of how my son is wired, he really needs me. I LOVE that, but on occasion I feel like I need a minute to breathe. We went from spending the majority of every day together to (during the school week) about 3 1/2 hours (awake.) Now that we are a few weeks into this new schedule, I know he just needs MAMA and LOVE during that time period. Errands and life have a hard time fitting into that time slot.
Transition for him has been difficult…as much as I am a sleep nazi with his schedule now, he still remains tired. His diet is beyond horrible at school so I am sure his energy gets low. (I don’t think chips provide the protein he needs. haha.) He isn’t used to NOT having a choice when it comes to the activity in his schedule. That is rough. Throwing and spitting then ensues, and behavior gets out of control. Reading these handwritten notes from his teacher when he gets home from school that describe the destructive actions that occur break my heart. Jasan and I are so connected that it is hard to hear that most of his days now are rough. So many questions go through my mind. I know he needs to learn how to follow a schedule at school. He will never survive in life if he doesn’t, I just wish it didn’t have to be such a painful process.
These past few weeks of what has felt a bit like mayhem to me, I have learned this. I know my son is beyond sensitive to my energy. He knows when I am not my even keel happy self. He may not be able to ask me, “What’s wrong, Mama?” but he will manifest his sensitivities to my discord in different ways. Sickness, moodiness, behavior issues, etc. And then, of course that adversely effects me. The vicious cycle continues until I get my head out of overwhelm and center myself.
I think our children with autism have a special gift. With the way they interpret their environment around them, how could they not be extra sensitive to what their caregivers are feeling? All kids are, of course, but our autistic children…
I believe it’s on a whole other level.
Which poses this thought. When you are a parent or a caregiver to a child with special needs, it is more important that ever to keep life in balance. That may sound unrealistic. Shit happens that we don’t necessarily control. But do we have the ability to create what we want in our reality and keep drama at a low? Absolutely we do.
I think it’s one of those things that we need to really think through to help our children. For example, we know that going into certain environments will cause sensory overwhelm and upset. We know the tools that they need to be able to cope appropriately, or we don’t go. That’s a simple one.
But what about when it comes to our emotional health as the adult? What can we clean out of our day-to-day to reduce emotional upset within ourselves?
That will greatly benefit our children. When we give them a calm and emotionally stable environment, that clears the way for them to thrive. We are their examples. With the challenges that they already face, wouldn’t it be the perfect scenario for them to succeed? I realize that this is much easier said than done. It takes lots of practice. I am not an expert by any means, but I do know that my awareness level is on track. That is step number one…
A key to this is living in the moment. Are you?
When I feel like I am living in the moment, I feel more calm. I can embrace what is happening. I can be grateful for where I am at, no matter what the situation. At this stage in my life I don’t believe in coincidences anymore. Life is always teaching us something. We have to open our eyes and our minds and be free to see it.
Sometimes you just need an eye shot of a cute butt to bring a smile to your face. This cute butt works for me!! 🙂
When I really feel off, I am going to bring my mind to this moment. Jasan. Beach. Waves. Running. That smile that melts me. Sunshine. Beautiful places on this earth that we can travel to see. The feeling of sand in-between toes. Watching him discover this beauty surrounding him. Sounds. Senses. Umbrella drinks. HAPPINESS.
It’s all about mindset. It’s worth it to me to keep a balance. For my own well-being, but ALSO FOR MY SON.
The crashing. His body needs it at certain parts of the day. His sensory system craves pressure to regulate. I realize this about him, and I get it. But I have to admit there are times when it drives me crazy. For example…
In stores or shopping areas.
When we are around people we don’t know.
When we are around people that don’t have any patience.
When we are at a restaurant.
When I am just NOT IN THE MOOD to be ran in to. 🙂
I could keep going, but you get the idea, I’m sure.
So, with that being said, I try my best to keep my thoughts on the positive and to work with him instead of against him. Instead of getting annoyed and telling him, “No!” (which just fuels the fire anyway,) I assimilate. If we are out and about, then I pick him up. Swing him around. Get goofy with him for a bit. Make a game out of it as much as I can. Go for a walk. Chase each other. Whatever I can do depending on the situation. Sometimes it works, sometimes it doesn’t. I know it’s the way he is wired. I want to love him and help him be who he is.
This summer, we did a lot of “crashing” in our gazebo.
Do you have ideas for your child(ren) when they need to sensory regulate and it’s inconvenient in the current momentary situation?