Friday, May 9, 2014

Living in the 'Spectrum'

I always said, ‘Forty means freedom’. Being a young mother, by the time I reached forty, my kids would all be fifteen and older no need for a babysitter and I could enjoy my life.  If twenty years ago, someone told me that at nearly fifty years old, this would be my life, I would have said, “No way, no how. I am much too selfish for that. When my kids are old, it’s me time.”

Little did I know that in my forties a bright little blonde haired blue eye boy would change my world. Everything about my world. Everything about me.

God is pretty cool. His has this keen foresight, thing.  Like giving me not only the passion and love for writing, but the gift to do so and the ability to make a living at it at just the right time. I am truly blessed in every capacity. But I honestly believe there is a master plan, There’s a reason I am able to be a full time writer. God was like, “She’s got to be home, be available and ready.  Eh.. let’s let her have this writing thing. Her world is about to go insane.”

That’s what happens when you have a child in the home on the spectrum. It’s insane. I searched you know. High and low on the web for answers, for people like me and my daughter. But either they won’t step forward or her and I are the only ones that feel this way.

My grandson is my life. He came into my life at my lowest point, raised me up, restored my faith, made me feel and I promised that I would do everything for him that I could and try to do more for him than I could for my own kids. He has lived with me since day one.

I support him financially and emotionally. My daughter, I want her to be the best mother she can be and she is awesome. I had to work when she was a baby, so since I am blessed, I tell her stay home, be a mom, be here, I got this.

We kinda knew when my grandson wasn’t speaking .. something was up. He would say words then a week later not say them. He babbled like a rush hour traffic driver listening to the radio and singing a song he didn’t know the lyrics to. Noise and sounds no words. He was diagnosed with Apraxia and hence, began speech therapy.

I live by the clock, I sleep very little, have my writing times laid out. What I do, every day is a must to make a living.

Speech fit in, but even though his speech progressed, something was off. He wasn’t progressing cognitively or socially. As bright and funny and smart as he is … He was different, but then so am I.

Okay, so what, he watched Japanese youtube toy review videos for hours on end. I listen to the same song for hours. Recently he was officially diagnosed with PDD-NOS. Pervasive Developmental Disorder. It’s a form of autism.  With that official diagnosis, when you are on Medicaid, in comes the state.

Suddenly, following  the diagnosis comes the throes of people the state says has to help you. TSS Worker, BHC worker, DART. IEP. Ug! Someone take me off of this merry go round.

Not including the speech pathology which I take him to, all of these people are now in my home, every day, several hours a day. And they don’t just work with my grandson, one adult, me or my daughter must be present. Since I have two other granddaughters. Veronica wins baby duty and I sit with the workers. It is draining. I not only watch them work with him, I have to be instructed on how to be a parent and good guardian. God help me if I look at my phone to do emails.

There was so much going on, every day, so many hours a day, that I removed him from preschool. Not so much for him, but for me. I can only do so much. Work all night, get up after two hours, take him to school,, take him to speech, bring him home for four hours of therapy.

I don’t know how parents who work 9 – 5 jobs do this. If I wasn’t a writer, I don’t know how we’d handle this.

Don’t get me wrong, the workers are great, they are sweet, caring and love their jobs. But there’s no instruction booklet with this. No one tells you what it’s going to be like. Suddenly people are in your home, all the time. The bright side is, the house has never been more tidy.

I have one worker telling me , any routine is a good routine. The other telling me, ‘Yes, you have a routine, but it’s not normal.”

Under whose standards?  It’s normal to me. I want to scream at times, “I know how important a schedule is. I HAD one, now I don’t.”

They told me to stop putting the cookies out on the counter and to regulate them. “Kids can only have a snack when you say so, not when they want.”


Kindergarten is in the fall, and he may or may not get in. Tomorrow is five places for paperwork, a dentist visit with, none the less a dentist who specializes with working with autistic children. All for the K Eval on Monday. Which he may or may not pass  IF he passes, then we now have summer school to get him ready, with therapy, for regular school.

I know it’s all for the best, it’s all to get him where he needs to be. But no one told us what this all entailed. Why isn't there a single support website that tells you how life is going to be AFTER the workers step in.

I want to pull out my hair. My poor daughter is so stressed. My grandson, well, he just talks about what he wants to talk about, Legos and Heroes and tells the therapist, “I’m done, go away.”

I wished that worked for us. I am still looking for answers, someone to say, it gets easier.

As of now, living with an autistic child seemed a heck of a lot easier before we got help.


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