Where is she? / The me / that I used to be / before my autism odyssey?
During my 35 years of living with a son handicapped by autism, I’ve walked (or crawled) a fine line between trying to balance his needs with my needs. Most of the time, my needs lost out. In the beginning, I was totally focused on autism and what I needed to do even though half the time I didn’t know what to do. I spent a lot of time paralyzed by fear.
For years, I was so oppressed by autism that I could hardly make it through the day. I was drowning in my misery and feeling sorry for myself until I noticed that PJ was drowning in his own misery. He had no way of telling me that he was in pain and I found out that sometimes his outbursts and tantrums happened because he was in pain from ear infections.
I hope things have changed with the increase of the diagnosis, but when PJ was small, taking him anywhere in public was an exhausting ordeal. He looks so normal that when he did something inappropriate or made some of his loud vocalizations, people thought that I was a terrible mother. I know what they thought because they would tell me. People would flash me dirty looks and say rude things. ‘What kind of mother are you? Make your kid stop that? Why don’t you keep that boy at home?”
I did start keeping him at home. For three years, I did not take him anywhere because I was tired of public embarrassment and humiliation. I hope things have changed so that now parents don’t have these feelings when they take their autistic person anywhere in public. During this time, I was not going anywhere by myself either unless it was absolutely necessary.
I finally realized that I needed to try to have some kind of normalcy in our life and quit hiding out. I needed to take a break from autism. I was blessed that PJ had older sisters and an older brother who could stay with him when I made one of my getaways. They were my first support network. I pray that parents now have some kind of support when they need a break. Parents need “me time”. That is why we formed the PJ Foundation, to offer support to parents in need. I pray that the foundation grows so that we can offer more in the future than we can now.
PJ is much easier to live with now, or we could not still live together. I never expected to live with him this long. I still have to balance his needs with my needs, but it is much easier. I always said that I would have to adjust to him because he could not adjust to me, but he has adjusted to me. We have both learned and grown. I found out that lost sleep, heartache and anxiety doesn’t kill you. They say that what doesn’t kill you makes you stronger.
Where is she?/ the me / that I used to be / before my autism odyssey?
Autism rocked my world / Changed me from a woman back to a girl / Thought I was grown / but now I know / that once again, I had to grow.
And keep on growing, / again and again. / When will it stop? / I don’t know when.
If God brings you to it / He’ll bring you through it. / But it seems I’m never through
So after all these many years / I still don’t know what to do.
So the me / that I used to be / is still trying to be free. / Did autism steal my identity? /
or did it create a better me?
Until next time; May you have peace, love and prosperity in your life.
Claudreen, you surely speak for me here. Thank you for expressing what is in my heart better than I could have.
A while ago, when you sent me the book you’d recently had published, “Inspired By Autism,” I opened it immediately, and read through late hours into dawn. Your honesty about things you & PJ went through brought back nearly-forgotten memories, of hard hours and days. I remembered being lost, as though nothing existed but autism and darkness. But as I read … you seemed to KNOW. From you, I received the understanding I had never had from anyone. That someone else had been going through the same kinds of things back in those lonely early years, and survived, different yet surely better, made me feel like I am ok. I am a good mother. I appreciate you for helping me to believe in myself.
You are great at expressing what is in your heart. You are better than OK because you have been living with autism for 35 years. You are a pioneer! We did not have the kind of support that parents have now. We felt isolated, overwhelmed and alone. I am so proud of you for hanging in there. I always appreciate your feedback.