The weekend was oh so good. One part fun, one part soul-filling. There seemed to be a bubble theme throughout.
He loves to stand right in front of the machine and let the soft bubbles pelt him in the face. And I love to watch him. I'm smiling so big as I type this.
On Saturday we went to Step up for Down Syndrome. It's our local version of The Buddy Walk. My life is enriched because of Special Needs. I was missing out on so much before and I didn't even know it. Thank you God for letting me know it now. Because now I also know of unconditional love and patience and miracles that look like little baby milestones in life. I see stories of struggle and joy and hope. The world is a pretty amazing place.
It's a beautiful thing when the whole village gets together to unite over the same thing.
We went with my best Friend Annie. I wrote about her amazing Sawyer HERE. The world is a better place with them in it.
And on Sunday we went to the Fresno Fair.
Read the signs. Deep fried Twinkies and Candy bars. WOAH.
Greyson wanted to ride every single ride.
Parker preferred to watch.
And eat ice cream. "How about we let the boys share one cone because it was $4.00?"
Horrible idea Mom
Cone #2. He couldn't wait to dig in. So he didn't.
On Sunday evening I was jotting down notes for a post I wanted to write. A post on the power of the mind and the importance of positive thinking. I was reading through a book and it had so many good points and quotes I wanted to share. The thoughts kept flowing out because it's something I feel incredibly strong about and I was so high from the weekend. I had a two-hour writing window this morning where I was going to organize all these thoughts into words.
And then I woke up and Monday happened. Poor Michael had a scheduled surgery first thing this morning to remove his thyroid. Parker's morning therapist had to cancel. My cold pressed coffee wasn't even working. I swear! It's like my caffeine center was BROKEN. My allergies were bothering me and I had a headache. I had to bring both boys to a doctors appointment. We were our own little storm fit for a sitcom. If I had been watching I would have been LAUGHING.
SCENE: Large physician office. Five year old Greyson is in the waiting room, jumping back and forth from magazine strewn coffee table to chair. I am playing the role of the scattered Mother trying to sign in. Three year old Parker is removing every item he can reach from the sign in area. STAPLER! Pens! Candy jar! More pens! Sign in clip board. Computer mouse! He's grabbing everything as quickly as I can put them back.
I fill in my name. Parker runs for the elevator. I go grab him right before he gets on. There are way too many questions on the sign in sheet for a Monday. Time?! How am I supposed to know what time it is? I'm probably late and I'd prefer just pretend like I am not. Who are you here to see? Hmmm- this is too detailed for a Monday. Hopefully they will be able to figure things out from my name.
Greyson- Bottom in chair, I call out. Greyson doesn't want to sit in the chair- he wants to jump from chair to chair and I've ruined his fun. SCREAM SCREAM SCREAM SCREAM. He starts screaming so loud it hurts my ears. Painfully loud screams that cut into my head and make my jaw clench.
SCREAM SCREAM SCREAM SCREAM SCREAM. It won't stop. Over and over again he screams with this devilish smirk in his eyes. Unless he is harming someone, we aren't supposed to correct this type of unwanted behavior. (Basically everything about parenting a child with autism is counter-intuitive and it took me a long time to learn.) You are supposed to ignore the unwanted behavior and redirect the child. At first I didn't believe the data and research. I would do what I assumed a parent should do; say, "GREYSON! Stop Screaming!" Yep, those types of corrections cause the behavior to occur ten times as much. TRUST ME. The days I can't help it- the days I yell out- "STOP SCREAMING"- are the days he will scream all the live-long day.
I am walking towards him thinking about how I am going to make this stop. The scream is slicing into my brain and I cannot concentrate. I hand him the ipad- "Let's work on our letters- I tell him", like I'm calm and NOT about to go insane. It works. (SHEW).
Christina Kelly? They call my name and I round up the boys. was getting injections in both of my knees that went out last year due to running and arthritis. A nurse has to guide a needle into the space behind my kneecap to fill the area with a hyaloraonic acid. Did you know that's the same stuff used in facial fillers for big lips and wrinkles? Man, my knees are gonna look so young and hot. Both boys think our little room is a playground- jumping and grabbing ALL the things. Finally with the help of the ipad and a "balloon" glove- I get Greyson and Parker settled. The nurse starts to load the needle and inserts it into my knee- and suddenly without thinking I jump off the table to stop Parker from grabbing a handful of syringes laid out for upcoming patients.
STOP! The nurse says to me in fear. I look down and see the needle sticking out of my right knee. She hasn't pushed the medication into the right spot yet- it's just a large empty syringe hanging off me. She qucikly does both knees while the boys are pure chaos and finally we go to leave. As I check out I am THIS CLOSE to losing it. I want to sit on the floor and cry. I get into my car and take deep breaths. My hands are shaking. WHY IS THIS SO HARD? I am asking myself. And here's the thing--Life isn't hard. Most of us go through 95% of it feeling that way. Then BAM. The 5%. And it's awful. And we trick ourselves into thinking it's ALWAYS awful. We can't BELIEVE we were ever happy. We can't believe it was ever easy. We SWEAR it will never be easy again. But we are wrong. We are sucked into the 5%.
Then we go to Speech Therapy and as I'm about to walk in...
I started to reread my notes then about positive thinking then and boy did they piss me off. Here's the thing- when you are in the middle of the 5% nothing helps. You just gotta wait it out and ride it through. No quote or motivational theory will help you do that. For me that comes with time and perspective. I need to reset- a nap, a walk, alone time- something bigger than the phrase "Don't worry be happy." After a little time- which leads to perspective- this is what usually helps me.
Tell people you are in a hole. Tell 'em it's hard and you need words of encouragement. The things we struggle with most is what often connects with humanity. It opens us to empathy and pain and a reverence for the ordinary. Although our circumstances may differ- there is so much in which we can relate. I ALWAYS feel better after I tell people I'm having a crappy day. Maybe they are too- and if they are not- they can lift you up.
Ask yourself- Is it over? Hours after my doctors appointment I was still shaking and stewing. Thinking about how AWFUL and out of control the whole thing felt. Essentially I was torturing myself. It was OVER and done with- yet I was STILL there in my mind. It was time for me to let it go.
One more question- Did the awful thing do any damage? (If yes, can it be fixed or undone?) In my case the answer to this was no! This is not a permanent thing. This does not have to happen again. Nothing was ruined after today.
Lastly, is there anything good about the situation if you flipped the coin to the other side? Hmmmm... this one always takes me the longest to arrive at. First- the kids were with me because of faulty scheduling on my part- but also because I'm a stay at home Mom. This is a job I DREAMED about after I had Greyson. I am so lucky to do what I do! Some people would give anything to stay at home with their kids and can't. And also- these injections are covered by our insurance. They would cost thousands out of pocket. We couldn't swing it and I would be in so much pain without them- so at least I can get the injections.
And now life is good again. I'm going to start new again tomorrow.
Thanks for sharing. Your perspective is always so helpful and your right in those 5% you really do just have to move on and get through it. I do find it funny these experiences alway happen in the doctor's office. Maybe Autism Speaks could do some time of training guide for Medical Professionals. It could include tips like please help us corral our kids by giving us a room immediately and leave the door closes (I can't tell you how many times mine have escaped), also don't leave tons of expensive equipment just sitting out for little hands to explore (or throw), just kidding sort of.ReplyDelete
I love the point about asking yourself if it is over. I will continue to beat myself up and stress over something long after it is over. Hard to let it go sometimes.ReplyDelete
You are so right about when we are in that 5% crap moment it feels like it is the whole month long. I like that reminder. - EricaReplyDelete
Yes that 5%!!ReplyDelete
Such good advice- esp " is it over" a question I could do with asking rather than just rehashing stuff in a not helping kinda way:)
This is the post I didn't get to finish yesterday. I needed it today, I let yesterday's funk carry into today. I am going to lunch with my brother today and see my Celebrate Recovery peeps and hear and amazing testimony. I will let go of yesterday and this morning. I will focus on the rest of the day and make it a positive one. - Janet WReplyDelete
See my CR friends this evening and hear an amazing testimony. (there is not an edit or delete feature, if there is I don't know how).ReplyDelete