Ever have one of those days where everything goes perfectly….from the weather, to being the first in line, a prime parking spot right when you pull in the lot, kids who are happy and A.P.P.R.E.C.I.A.T.I.V.E.?!?!? Yesterday was a day that, honestly, a year or so ago I never thought my son would do….not just do…but, THRIVE!
It started with a trip to Target to pick out new shoes that Josh badly needed especially since we were then headed to the Renaissance Festival….and after the festival he had a birthday party at a glow in the dark putt putt place in the mall which he then followed that with coming home and going over to our neighbor’s house, playing with 6-7 other kids, bouncing on a trampoline….having one awesome summer day!!!
I remember when going to Target was exhausting and almost always led to a meltdown. The lights, the noise, the over stimulation of it all….He would have to wear his headphones and I’d have to walk the store the same way, through the same aisles, the same direction(even if I didn’t need anything from them) just so he’d feel safe and secure enough for me to speed walk through the store and get what we needed.
Going on an outing to the Renaissance Festival…a new place, new rides, new shows, with new people and kids, let alone all the people dressed up in, uh, ‘imaginative’ costumes….wowzers…yes, wowzers…I can only handle a bit of that at a time! But, remember, it was a day where everything just kept running so smoothly. The weather was ideal…a slight breeze, overcast skies, not too crowded, the kids were taking it all in and trying new things and NEW FOOD!
The next part of the day was me taking Josh to the birthday party. Um, yeah…we don’t ever go to the mall…and by never, I mean we’ve lived here 4 years and I think we’ve been there 4 times. And, again…going to the mall with a sensory kiddo can be exhausting and add on a birthday party with kids screaming and black lights…oh boy, it’s like a perfect storm brewing! And, yet, again…yesterday…he left the party with me and as we were walking to the car he informed me about how much he loves me. Right?!? I mean a day like today is almost too much for any kid…So, I was so impressed with how he was handling and adapting to every situation.
We came home and he immediately wanted to play outside…which is always welcomed! The kids in our neighborhood were out…and, to our surprise, he went over and started playing with them on their driveway and then in their backyard on the trampoline with about 6-7 other kids. I honestly didn’t know what to do…he was acting, well, so ‘normal.'(whatever that actually is…maybe I’ll use the word, typical…yes, ‘typical’ is better).
I think there comes a point where most parents of children with a diagnosis of autism or SPD are simply waiting; waiting for that meltdown to happen. I realized that I was living yesterday in the waiting…waiting to see what trigger was going to send him into a tailspin. I’m grateful that my eyes were opened to that before the day was over. I started breathing and e.n.j.o.y.i.n.g. the day…I know, what a concept. I enjoyed the people we were with. I enjoyed watching the kids watch some crazy guy breathe fire and knights on horses in the jousting arena. I watched Josh get so excited to see his friends at the birthday party and how they ran up and gave him hugs because they were so excited too….and, how he quietly came over to me and asked me if I could walk around the mall during the party because he ‘felt good.’ I was breathing that all in and watching and being grateful for each moment.
Are you wondering if a meltdown ever happened? Well, I’ve learned as he’s getting older and being able to handle these type of days…the FOLLOWING day can be, well, hazardous to us all and it is best to have a day at home. This is what we are doing…and, this is why the title of this post is called ‘Trying To Breathe.’ Yes, yes it started at 7:15am this morning…yes, the defiant, disrespectful, need all the control, exhaustive meltdown is happening.(this is why I’m in my office typing because I have tagged out and Eric is tagged in for this round). I knew it was brewing when, at 10:00pm last night he was just falling asleep. I knew it was coming when he couldn’t lay still and we had to go back to our metaphoric tool box and do joint compressions to help him. And, this, this is what breaks my heart.
This is a picture of all his music stuff from this room…these are his treasures…his loves…his therapy. He tore off his list of his CDs from his wall and marched and threw all of this downstairs to our dining room where we are gathering things for a garage sale/giveaway. He yelled he was never doing another concert. He was never listening to his music again. He wanted to sell ALL of his music stuff.Why? Because his sister needed a CD that was in his room.
These are the moments that I can be rendered speechless, motionless. Which child do I protect? Which child needs to understand? Which child needs to feel loved? Both, right? Don’t both deserve all those things? Why does his sister always have to be the one that takes the blunt of these meltdowns? She simply wanted a CD to listen to in her room. It was not Josh’s…it was just in his room.
She is more wise and discerning than most 5 year olds. She knows that she has caused Josh this pain and stress…but, really, SHE hasn’t….
It is in these milliseconds that I have to make a decision. Who do I stress and challenge? More often than not, Samantha will concede and change her mind. We are trying, desperately, for her not to do that with her brother, but to learn she can stick up for herself…she is learning, but, she also loves her brother with her whole being and if she can make him laugh…she will. It is in this moment, standing outside his room, that I try to help him understand and come up with solutions to his frustrations…he’s sitting there fighting tears, (I want to run and give him a hug, but I know, in this place, that will send him over the edge…ugh, I’ve been battling my way of parenting for almost 8 years now…he has taught me what he needs…I have to respect that…not parent out of what I need), he is biting his tongue to not say hurtful words(I’m so proud of this progress)… Eventually, it is all too much…Samantha does get the CD and walks with her head down back to her room. Oh my heart…I walk with her, because I’ve learned that Josh needs his time alone to yell and cry. I attempt to encourage her and I feel like she can see right though my eyes and hear the real words in my head….”I hate autism. I hate these moments. WHY am I still taken off guard when they come? Am I not doing enough? What am I missing for him? for her? Do they know how much they are l.o.v.e.d?”
I make peace with her.
I turn around and I see what he’s doing. His CD case. His microphone. His keyboard. All outside his room.
I go. I don’t want to, but, I go…I talk with him about making decisions when we are angry and hurt. We often regret those the most. He looks at me and listens…I try to remind myself of these words at.this.very.moment….I remind myself how much progress he has made…it use to be fruitless to try to speak during these times with him, but now, he’s open and listens and takes it in. I try to encourage and love. But, ultimately, I know he needs his time and space(like his mom.)
Ok…it is almost my turn to tag back in. I can hear outside my office that he’s been with Sandi. Sweet, Sandi…and we all have plans to head outside. I am breathing deeper now…
Deep breaths in…Deep breaths out….Prayers in….Prayers out….
“The Spirit of God has made me, and the breath of the Almighty gives me life.” Job 33:4
In the meantime…it will all stay there….and we will see if tonight…it moves.