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Autism: The Words Won’t Come

12 Dec

They have been scheduling the appointments one after the other, and six weeks apart. I do not see how that can be of help j- but it seems that is the problem. They do not feel they are helping.

The medication she has prescribed has given me such bad side effects. Not only that, my anxiety and depression has increased significantly, and every time the medication has been changed, I fall to such despair (from the medicine, not the thought that it isn’t working) that I become nearly suicidal.

I say nearly, because although in the moment that seems to be my only option, I have neither attempted it, or allowed the thoughts to remain. But the despair in those moments is so deep that I feel I will never overcome, and that nothing in my life is worthwhile. It is the medicine speaking. That and my own personal demons, who will not be silent, despite my pleas and demands.

So far I have come through it, but I must mention it. When my medicine is changed or increased, this is the result. Don’t you think I should be watched then? My thoughts shout at them. But they don’t hear that. They hear, “I don’t want the medicine. You can’t help me,” and they want to turn me away – or maybe they think that is what I want. It isn’t.

Please find something that will help, I plead with my look. I don’t want your help, they hear.

Why won’t the words work for me? Why can’t they see me begging for their help when my words won’t come?

“You seem to communicate well,” other people tell me. Then why can’t they hear me?

Maybe they think they understand my words, but they are most always wrong.

My rejection of your ideas doesn’t mean I don’t want your help. I am here, aren’t I? But my words won’t come out.

Don’t they see, when they ask me to talk of such hard things, that I am overwhelmed? Don’t they know I have tried so hard already to do this on my own, that if I say I have tried that idea, it is because I have?

Try something else, I plead with them… but the words won’t come.

So they turn things around, “I am not sure I am helping you,” they tell me. Tough love. “Do you hear what I am saying?”

I nod my head, “yes.” You are going to give up on me, too.

And I break. I turn away, and can’t stop the tears from coming. My husband beside me nods his head, yes. Tough love. It hurts, but that will work. She will ask for the help when she wants it.

I am here now! I want to scream. Just scream, no words, until they can hear me. Why can’t they hear me?

I am here now. Do you know what it took me to come here today? I wouldn’t be here if I didn’t want the help. Why can’t they see that?

Try something else, I plead. But the words won’t come. The words hardly ever come… and when they do, people respond as if I were always able to speak them. They don’t know how hard it is to get the words out, to even figure out what the words are when my thoughts come more in pictures and emotions. How do I translate?

She isn’t hearing me, they think. She hasn’t tried any of my suggestions.

But they don’t know their words fill my thoughts for days, weeks, months… and I try everything after – but still end up falling, and pleading again, please help me!

And I can see them giving up on me, as everyone has before. They think they aren’t reaching me, but they are – or I wouldn’t keep returning.

She doesn’t know I sent my boy a Facebook friend request the very day after she had asked me to find a way to move forward. She doesn’t know how I beg and plead and pray to God to reconcile me to my children – to allow them to come home – to allow us to adopt them after all… I can’t move backwards to get them, please let them be in my future. This from her words, that she thought I rejected… and day after day I cry again, for my children are not home, and I am not sure I believe they would want to be.

She doesn’t know that when she asked me to write a children’s book, I wrote it – then hid it in fear of failing again. I can’t fail again – I couldn’t take it. But still I did what she asked me to do, only she doesn’t know.

I made my weighted blanket, rocked on my lawn swing, bought a rag scarf, and filled it with calming scents… all on her suggestions – and all of them help… but she thinks I have rejected all of her ideas, though I walked into her office wearing my scarf, and lifting it to my nose to calm myself as she had me talk of things that were too hard.

And still she reduces my visits, because she doesn’t think she is helping.

“How can you move forward?” she asks me, find a way to bring my children home, I plead… but the words won’t come. It’s impossible, I think – and all I say is, “I don’t know.”

“If you could go back in time, what would you do differently?” She asks.

There is so much:

  • I would probably still have my son, still move here, still marry my husband, still try to adopt
  • I would send the children to school and daycare – because now I know that my idea of a good amount of socializing looks like isolation to other people. I didn’t know.
  • I would not listen to the people who told me that a sugar free/wheat free/casein free diet would help with the children’s behaviours – not because it didn’t work (it did) but because to other people, it looks like nutritional neglect. I didn’t know.
  • I would remind myself that the rules they told me about not allowing others to feed or care for my children (to help with attachment) were not absolute. I see rules as absolutes. I would need that reminder. I didn’t know.
  • I would build my daughter a safe place to fall apart, where she couldn’t hurt herself, so that I wouldn’t be scared of what others would think. I would build that right away, so that I didn’t fall to solutions that I heard from others – but weren’t right for us. I would work on her sensory issues right away – because her meltdowns were as extreme as mine – only hers were louder.

There is so much I know now, that I didn’t know then. If I had another chance, I would do better – but it seems impossible.

I want their help – though my words won’t come to express that. But I need them to be gentle. I need them to hear me – all of me. I need them to hear the words I cannot speak.

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