School Daze…

Yes, here we are!!  Most of the special needs parents I know, are very grateful for the school year to begin.  Admittedly, I am among them.  It is not that we do not want to see our children, or we want them to go away…not for me anyway.  Needing a break is healthy and normal to be a good parent, especially so for special needs parents. However, in my case at least, school provides structure, routine and fills the time that my kiddos can not with their difficulties.  So much of my time is willingly and loving spent playing and facilitating for my kiddos, but I am a mother, not a professional, and I have other responsibilities.  Some mom’s work. Good for them!! I have a job as well.  House work, daily care, therapist appointments for all involved, organization, scheduling, and much more I will not bore you with.

As school is in session now, I am taking a moment to catch up on my BLOG finally!!!  The summer was fun, filled with pool time and sunshine and boredome and therapies….yet it did not feel as if we had enough time to play.

I love that my little one, now big boy at 5 years old, (yikes), loves going to his new TK-school that I was so worried about.  He enjoys the structured time mostly, and knowing what is expected of him.  The undivided attention of paras and aides and teachers…

Then he comes home.  All too soon because his day is short.  3 hours!  We often find something to do immediately after, as coming home right away is a struggle.  Grocery store, Target, icecream shop, toy shop to play on the train table…(we have one of our own but it is always so much more fun there for some reason).  Car wash! Whatever I can think of to ease the transition into coming home.  Eventually we arrive in the driveway and he will not get out of the car still.  G. sits there for a good 20 minutes every day.  No matter what.  I gave up fighting him.  I leave the doors and windows open, park in the shade…and I wait on the doorstep until he is ready.  He never shuts the door when he finally emerges from the car.  Drives me nuts!  But at least he’s out.

Inside our routine is to snack.  Change his diaper.  Whichever comes first.  He got a trampoline for his birthday.  We jump if it’s not too hot out.  Sometimes swim.  I try to engage in play…with actual toys.  There is an abundance of toys in this house.  OT related and not.  Nothing interests him.  Hot Wheels, trains, puzzles, etc.  Nope.  He refuses everything.  Sometimes we can play on the XBOX, however, that is only 15 minutes then my timer goes off and we shut it off.  Too much creates a manic episode of jumping and body slamming and giggles that are borderline meltdown mode.  We use the ipad to work on speech which is alright.  None of it really fills the time.  We constantly have to change activities.  I try to do a quick laundry load, empty the dishwasher maybe…if I can.  Usually though, we sit for a good 45 minutes or so just snuggling while he plays a game on his ipad.  Because really, it engages him for a good chunk of time and I am exhausted.

It is 2:00.  Alarm goes off and I have to get A. Getting G. out the door to walk and pick up his brother, is always the most difficult and stressful part of my day.  I try to prepare him, try to front load him.  I need to make a visual schedule still, but somehow forget after a day of everything else.  Once out the door he goes with the flow pretty well.  It is always getting out the door.  Only for this task of getting his brother.  Nothing else.  Interesting isn’t it?

And this is school daze.  We go through the routines and motions of our day and the boys are dazed after school.  Tired.  I go through the motions dazed…like a robot trying to keep things “normal” and as routine as possible.  Four out of five of our weekdays have another after school thing…activity or therapy to attend.

I have 3 little hours to myself.  I do a lot of housework.  Maybe try to catch a yoga class instead once a week or so.  This is my goal at least…still in progress.  Self care is difficult.  A walk would be a good idea…

School Daze.  They are here.  They are flying by.  The first IEP is looming already….then it will be summer again!  School helps fill our day, helps them sleep well at night…helps them socialize and learn and grow.  It makes our days pass quickly which can be extremely long and exhausting when you have a couple kiddos that need a lot of 1:1 attention and monitoring etc.  I am grateful for school to be in session…I wish somehow it was not such a daze though and somehow more mindful…it goes by too quickly to feel present, but in some ways it takes the stress off of me to provide so much more than I do.

Still…I miss the summer, or the promise that comes with summer.

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Author: Vic.E.

I am a Mom. I am a Caregiver. I am an Advocate. I get paid in unconditional love, in progress and by the amazing support of my very hard-working husband who is the greatest Dad to our two boys. Our first child came in 2011. He was orange haired and big, 9.5lbs…yikes! He was a butter ball. Just perfect and delicious! His eyes came out green like Momma’s and his skin tone white with freckles like Dad’s. He will be taller than both of us, over 6’ according to the trajectory of his health chart! He has his great grandfathers build. He is smart, has an amazing memory, is super creative, and is sensitive, so empathetic. He is my first born and just perfect. He is also diagnosed with Autism-mild, ADHD, Anxiety, dyslexia, possible dysgraphia and possible other things…really, just all things to help him get the supports he needs to thrive in life. At his core, he is who he is. Full of silly laughter, big smiles, a warm heart, intense loyalty, a strong justice gene, and a fundamental belief in the good. My second and last child, was born in 2013. The boys are a year and a half apart. He was born looking like an old man. Poor kid was induced early, for fear of another large infant and my ignorance I had a say. He had the umbilical chord wrapped around him and was blue as can be. He recovered fine though, no need for oxygen or anything. But he was checked on a lot to be sure. His skin would be tan like mine, but he won’t go outside much in the daylight. His eyes are closer to Dad’s and his Gran’s (my husband’s mom)…hazel green/dark blue. He has moles rather than freckles, but other than the should be darker skin and moles, he looks just like his Dad. A little mini-me of my husband. Same sandy dark blond hair, same darker eyes, same features. His body is more like my husbands as well. However, he is due to grow over 6’ and will most likely be taller than his big brother! He had a level 4 tongue tie. Something I thought would stretch and break on it’s own. I was a naturalist momma. Keep those sharp objects away from my babies!!! He was able to nurse just fine, and we got to take him home. He was diagnosed first, his symptoms were classic…development fine and then massive regression. He was around a year old when we noticed. The doctor at my other son’s check up saw it, and referred us to an “evaluation” which I did not understand at the time. Anyhow. He is Severe-Autism, ADHD, non-verbal. Although, 10 years on, I don’t like that term for him. He chats all the time, mostly scripts, mostly needs and wants. Rarely anything novel comes out, but when it does it is brief, but magical!!! He progresses every day. My life went from social to isolation pretty quick. Other’s noticed the differences with our kids, my youngest was unsafe to take out for years. So, here are our stories. Jumbled up, in reflection, looking forward, retrospective. I try to write about our progress, our hopes and show the raw side of living a life in a house of neurodivergence. You are not alone, we are many. It’s time we showed ourselves to the world and stopped hiding our kiddos away. They deserve to be celebrated, included, loved.

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