Autism: Coming to terms with the changes

A couple of years ago, I had an adjustment to make.  My son was no longer in school, he had moved into Adult Services. The time for learning, it seemed, was past.

I didn’t take it well.  The frustration seethed inside me, and in true INFJ fashion, I vented in written form.  I post this today just to show that being the parent of a child with special needs is hard in ways you cannot anticipate.

I have moved on now.  I have accepted.  But back then, acceptance was the last thing on my mind ….

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It’s MY problem. Not theirs. Not even Ian’s. Mine.

I just feel they are selling him short. Dumbing him down. Doing him and his extraordinary abilities a disservice.

I can’t read these notes any more. They make me too angry. Really hit-someone angry. I can’t take it. I have to raise my hands and surrender to them. Completely. It’s their show now.

I had my turn.

Just let them not forget that everything he knows, everything he can do, is because of me.

Me.

Not them, and their quaint little ways. Not them, with their puzzles and ‘table time’ and ‘helping Ian get over’ an anxiety he never had.

Me.

And now I have to swallow it, all this anger and hurt. I feel let down in ways I didn’t even know existed. I feel belittled by it. Made worthless. All that work, all those years of dedication and persistence, worth nothing in the eyes of these people.  They take Ian back and back yet further, and I remember…

I remember the joy I felt when I taught Ian that, all those years ago. When it was new to him, and his eyes shone with understanding, and his mouth curved when I praised him. And we mastered it together and moved on, and he was happy, and I was happy, and the joy we shared was our private wonderland.

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Am I so utterly wrong in all this? Should I really just be able to step back and say ‘It doesn’t matter any more’?

I poured my heart into teaching my son. Everything I had. It took over my life, and perhaps for the first time ever, I felt as though I had a purpose.

Now, who am I?

What am I?

I feel utterly betrayed.

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Sometimes, lessons are hard but the pain teaches us, if we let it.

Now, I am just the mother of an autistic man who – if he’s properly reminded – can still do amazing things.

Our journey continues…

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“From the Inside – Raising, teaching, loving an autistic child” is available on Amazon.com as an eBook, and in paperback directly from the publishers, EmuInk.ie

 

 

4 thoughts on “Autism: Coming to terms with the changes

  1. Just brought tears to my eyes – you are an incredible woman and Ian is just as incredible – You touch me to the deepest core of my being – with your honesty – with your style of writing – I am so very privileged to have you as my sister in law and to have Ian as my nephew

    Liked by 1 person

  2. Your words touch the deepest part of my heart, and bring tears to my eyes, too. What you have described is, I think, a universal feeling that ALL mothers who are invested in their children feel….a joy and sadness as they grow up and away, a concern for our child not being recognized as the truly great person they are, and that special relationship while we show them the world. Throw autism in the mix, and it changes some, but not the humanity, the feelings both positive and negative and the same. Kids with autism, and families who have that challenge are no different than anyone else. We put our identity into our kids, and have good days, bad days, and “I don’t want them to leave home” days.( and days when we can’t wait for them to go ). I look forward to Fiona’s positive upbeat blogs, but really appreciate the words of struggle, pain, doubt and anger. No guilt, no shame, just recognition and discussion that feelinsg like that DO exist, and are part of the being alive experience. Keep up the good work !

    Like

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