What do I really really mean when I tell you that some days are just unbearably horribly bad? BTW, most days I would say 5 out of 7 are pretty bad. I don’t mean to be negative but that’s the darn raw truth, at least with this level of autism our family deals with. Of course the intensity varies per child, per family, etc. If you asked my husband how many days per week would be considered bad to him, he’d probably say 3. Different parent, different person, or in other cases like ours different amounts of hours spent with our kids. I work part time and spend 2.5 days more with the kids than my husband. Yes some days I would rather be at work but I would never trade in my days with spent with them. You can never get back the baby, toddler days EVER and I feel blessed to have had the chance to be part time career woman and half the week with my boys.
Andrew is on meds to control anxiety and ADHD. Nevertheless, the tantrums, whining, meltdowns, high anxiety, paranoia, OCD are still very much present.
I know for a fact there are people in our lives who THINK they know my son and me. They JUDGE beyond belief to no end thinking just because they’ve spent 1 hour to half a day plus you know, my never ending stories that they TOTALLY GET IT and TOTALLY KNOW OUR LIFE. That I am such a horrible mother for having a short fuse and Andrew is just a bad kid who gets what he wants OR ELSE. For people looking in, the criticisms, judgements, gossip is probably the easiest way to deal or handle having a family like ours in their lives. I get it, just as well as you get me, right? So we’re even. The truth is no one unless they’ve literally lived our life will ever comprehend one inch of the challenges and obstacles we face daily. Lucky for me I do have family and friends who are really really GOOD People, who I know would never or think the worst of us.
If I can literally illustrate what our days look like I would but too bad for us I’m not much of an artist like my kids and husband. So here’s the best I can do for now…
Example of one weekend day. Andrew wakes up easily frustrated over not being able to find a toy car. Starts off as cries, followed by ransacking through baskets of toys, followed by tantrums, blames everyone in the house for stealing or donating his toy car. Quiet for 2 minutes. Between my two boys I say STOP IT at least 20 times a day. No exaggerations. On a short outing like Target run or a day at an amusement park, Andrew will do ALL the following: script an entire video at least 10x. The other thing I say at least 10x a day is PLEASE LOWER YOUR VOICE. IT’S TOO LOUD. At times, he’ll walk up to someone and be in their face and script something really out of this world. He is always doing something that unfortunately catches negative attention in public. He’ll touch things. He’ll pace back and forth. He loves to explore. Wherever he goes, no matter how quiet or loud he talks loudly. Andrew is obsessed with media so he will fight to to no end over having it at least 5x a day, everyday no fail. He’s a master of persistency mixed with tantruming and whining. His sensory issues cause him to constanly snack and eat throughout the day. He craves carbs but is good about eating fruit as well. Andrew will ask or make trips to the pantry and fridge at least 4-5x a day between lunch and dinner. It’s work to remind him to eat something else or stop eating so much because he resists.