Today Aspergers has me beaten...Today of all days. World Autism Day when I had a beautiful post planned to shine a light on Autism and all it's beauty, when I had planned to tell you all a thousand positives and reflect on all I have learnt on my journey and how Aspergers has made me and my family, better,stronger people.
Instead I feel battered. My heart hurts and I can not think of one good thing to tell you.
Pierce has had a crap day , starting this morning with a massive meltdown due to having a relief teacher.After what seemed like an eternity but was only minutes of him clinging to me begging No.No.No. I left him in full blown meltdown.His Aide running to lock the library doors to keep him safe while promising me he would be ok and to go.go.go. My last glimpse was of his face pressed hard against the glass door. His hands clawing as if he could dig his was through to me and the safety of home. I left, with every single part of me aching to whisk him away. He has barely held on all day and has cried and screamed ever since I picked him up an hour ago. His eyes are raw his teeth are clenched,he is on the edge and already refusing to go to school tomorrow, even though his usual teacher will be back.He is holding the palm of his hand over his heart silently counting his heart beat in case this too fails him. I am worried that pushing him to stay at school today has backfired and instead of teaching him that relief teachers are ok and he can survive it, he is now full of fear and a hatred for school. Have I let him down? He seems broken.I have let him down.
His older brother Ryan is struggling too. It is the last week of term and he is tired.Tired of fitting in, tired of struggling to make sense of a curriculum not designed for his beautiful mind, tired of holding it together when he too wants to fall apart.
My eldest Shaun is over both of them and the drama,the screaming, the constantly having to give in to them.He is retaliating...he is baiting them which is of course being met with anger of epic proportions.
I am exhausted from the stress of wondering all day if Pierce was OK and dreading everything I am dealing with now.
In another hour I will pick my beautiful daughter Darcy up from Preschool. I will be told she has had a beautiful day. She probably has but I know that beautiful day will also have been a day of silence with her teachers having to entice a couple of tiny whispered words from her perfect mouth.Maybe there were no words and as we leave and walk to the car and she will finally spill all the words she has been swallowing all day I will hear her friends remark things like *I didn't know Darcy could talk* or *Darcy doesn't use her words*. I will praise her for her drawings and her craft and inwardly sigh and wonder why my gorgeous girl won't talk at school and then I will spiral into fear and dread at the thought of our appointment with the Psychologist that is closing in as I mark off the days on the calendar. I want to help her but I don't want to do all this again.
Aspergers has me beaten and I want to crawl into my bed under the covers, much like Pierce is doing now. I want to sleep and sleep.I want to wake up and find that someone else has cooked dinner and put my children to bed and dealt with the rigours and rituals that accompany meals and bedtime routines in our house. I want someone else to tuck Ryan up tight 15 times and assure him he is safe. I want someone else to give them their meds so that is one less thing I have to feel guilty about.
Noone else will.I will and I will get through tonight and I will eventually get it all done. I will wake tomorrow refreshed and with today a little less fresh in my mind. I will hope that tomorrow is better and I can once again see the beauty in Autism. Hopefully tomorrow I will win.
My blue light is ready and I will proudly and boldly shine it for my boys and maybe for my daughter and for all of my friends and their beautiful children who live with Autism daily. I will flick that switch and I will know that Aspergers does not have me beaten, not today, not any day.
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