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[starbell622-blog]

First Day of School

It’s the first day of school.  DS is starting 2nd grade.  2 years of fighting with the school over a diagnosis and help for DS, and end of first grade, we found out he’s on the spectrum.  Where, we do not know yet, because of course life happens, Dad’s job changed and we got thrown into the 3rd health insurance, and wouldn’t you know that insurance will not cover Autism testing.  No words.

We are going by the school’s diagnosis.  2 years after they put DS on multiple different medicines because of his “ADHD” and “ODD.”  He hits, he curses, he “lacks empathy,” lacks eye contact, sometimes doesn’t make sense.  But he is smart as anything and can do school work a few grade levels above the grade he is in.  He can do math in his head, spell big words, understands them.  This is orally, of course.  When he sits down in a classroom, anxiety, including some separation anxiety from us, his parents.  I’m sure we will get into that more later about him, but for now that’s where we are.  

I just started a new job less than a week ago, last Tuesday.  DH and I trying to do what’s best for our son, help him and allow him to learn with every other child, like he deserves to.  This weekend he was more than excited to start school, could not wait to go.  This morning, he woke up, “Mom, is it time for school yet?” -”No, buddy,” I said, “it’s time for us to eat some breakfast and get ready.”  Smooth sailing.  DD made her brother Toaster Strudels for breakfast, normally they do not get along, but today, everything was great.  Bus stop with DD and he behaved, no hitting his sister (which is more than other siblings fight), but not today.  He did develop what we think is a sort of “tick” for him, he has started blowing on his hands very gently, we have asked why, and when he does answer, he is “cooling his hands.”  This is something that came up over the summer that is new for him.  Around 10:30 am, school was feverishly calling.  I could not answer as I just started a new job, they called my old work and I got a message from a coworker, then they called my husband (DH).  I messaged my husband to find out what was going on already (It’s only the FIRST DAY and he was fine this morning!).  School said that he was having a “rough day” and someone needed to come and get him “immediately.”  

I don’t know about you all, but we are not in the financial position, never have been, to just leave a job for the day.  Not only that, DD just started with his new position right before Christmas last year, and I haven’t even gotten a full work week in at my new job.  They know how he is, they know he is on the Spectrum, and this year have extra help, in forms of special education and therapy classes that he can take a few times a week, paid for by the state.  Ofcourse we both love DS, but we also need to be able to provide for him, and we cannot do when we are missing non paid days from work, also risking being let go due to lack of availability to perform and be at work.  How do we be great parents and help DS, but work fulltime to be able to do better for our family and get us in a better financial situation?

I am still new to this.  Still Googling articles on Autism and other children experiencing the issues that we are dealing with, especially now that we ahve a diagnosis.  Trying to somehow make more hours in the day to try to get him into a STEM school, but also touch base and speak with someone at the STEM school to let them know issues and about this awesome kid we have, that needs help and someone to work with us.  Still trying to take care of myself, so I am healthy and able to fully care for him.  That isn’t happening.

Today started off so well, he was happy, DD was having a good morning, and although we know not everyone is so thrilled to start school, it was progress from him being upset and having rough mornings any other time.  Not even 2 full hours in school and they already could not handle him.  Stress set in and worry for him, that he is safe in his surroundings and isn’t scared not being able to understand all of this and why it’s happening, and I got physically ill.  DH had to go get DS, where he was sitting in the nurses office, no one was there for DH to speak to, as he was told they weren’t fully staffed today.

Holding on trying not to pass out from holding in and trying not to show that my insides feel like they’re dying, I hold out until the end of the day.  DH was home with DS and I knew that he was safe, though the situation still had me ill.  Come home and DS apologizes, he is sorry for not having a good day and cries.  I gave him a giant hug while he was apologizing, and I quickly pointed out, “I’m sorry you had a bad day, buddy.  I love you.” DS feels it’s his own fault this is happening, and it’s not, it’s the fact that many disabilities people are still judgemental for and not able to fully understand or help.  I am unable to fully understand, but I am admitting it, and with DS, it is always patience, as hostility makes it worse.  He senses tones, harshness, he knows and remembers those who have made him feel uneasy in the past, and most of the time, they are the ones still making him feel uneasy in the present.  Yes, and sadly, this includes grandparents and most family members, as they don’t want to accept this reality, that he is just a “bad kid,” “doesn’t listen” and we are in so many words to blame for not raising him correctly.

I sit and search the internet for articles to add to read, to better educate myself, and be able to help him, and he is standing in front of my desk at home, watching T.V. and is very close.  He already wears very thick glasses, he’s a -8.00 prescription.  He gets a little uneasy, but he listens.  Now he takes his shirt, swinging it around his body, stretching it out and pulling it up around his arms.  “Buddy, please don’t do that to your shirt.”  Immediately starts the “hand cooling” and blowing gently on his fingers/hands.  My heart immediately breaks.  I was told today that i have to stay overnight a few days next week in a different city next week, and this is happening.  I was already ill, now I just stare at DS and wonder what is going on in his head and how I wish I could just help him.

I have decided to blog about it, as I can document everything, hopefully to help not only DS, but myself in the process.  And if someone stumbles across this blog, hopefully it can help them in some way as well.