2.16.2009

Autism Hope

I was getting a bit impatient. 2 o'clock had come and gone and our appointment was for 2. Then the phone rang: Hello, I'm sorry I'm running late. I'll be there at 2:30 if that works for you.

"No problem, see you then." I replied before replacing the receiver. Just enough time to go hang up Jari's clothes. I came back down at 2:20 still this weird feeling filling my stomach. I was both nervous and hopeful. Wanting change but leary of another 'help organisation'. And I wasn't exactly sure which organisation she was from. When 2:40 hit and she still wasn't here, I started pacing. Thinking: This is someone who works with autistic kids. How can she be this late when a kid with autism is sitting there waiting. Doesn't she know how worrisome that is for an autistic individual.

Granted, the appointment was only for me, but my nerves were on edge. I felt that grawing irritation that my son must regularly have to deal with. Every car that passed I ran to the window looking out...when finally at 2:47 she pulled up.

I answered the door with a smile. "Sorry for the delay. I am Anita," she said giving me a handshake. "Oh, no problem." I smiled at her. "That's how life is," I continued, wondering why I was putting on a false pretense of this being okay. Because, well, it was out of my hands, out of my control, and now she was here.

I led her to the couch where she asked me to discuss my son and what I felt were the most important issues we eneded to work on with him. Where she could maybe be of some assistance. "But," she added "You have to keep in mind we are not miracle workers, and the time we get with you will be minimal, so we can only do so much." My stomach started churning again. Then why are you here? I need a miracle. I need help. I need someone to take away all the pain and paint our faces with a smile. I need someone to fix our problems.

I told her about my boy. How our lives are in an uproar on a daily basis and we never feel relief from autism. How if it feels so overwhelming to us, what must it be like for him? How I don't trust my son, wory about what autism is doing to his little brother, the worries about whether my marriage can sustain through all the turmoils autism brings with it. I told her I have no faith in any of the organisations which offer help, even though I want to have faith, want to finally have someone give us what we need to help our son learn. Learn that stealing is not okay. Learn that it's okay to eat normally and there will always be enough. Learn that sex is natural but also private. Learn that there are authority figures whom we must obey.

And then, when I got done telling her all the things we need help with, a way to help Kaeden learn because he seems to be unable to grasp the concept of right from wrong, I started telling her more about my son. The things I love about him. How giving he is, how much he loves to help serve guests. How he makes little bead pictures for the neighbor lady, just because she smiles at him. How he never fails to befriend anyone he meets, whether in a grocery store line or walking down the street. How he isn't afraid to be who he is. How he doesn't judge anyone, how he grabs a game and sets it up knowing I will be there to play with him. How he still loves to sit on my lap and have me tuck him in at night, with songs, a story, and a kiss. How he still holds my hand when we walk in the city. How free he is to shout and run and play when we are out in the woods. How absolutely sweet he is with little kids and babies. How a baby animal on tv can send him into spasms of laughter, or tears. How sensitive he is to mama when she is sick or sad. How he loves to crank up the music as loud as he can and dance and sing when we drive in the car, his arms reaching out the window swaying with the beat. How he loves to prepare surprise meals for me and share a picnic.

My son is a treasure. He is a rough edged boy. But he is mine all mine and as much trouble as he has forced upon me, how much heartache I have lived due to his outrages, how much worry I have had to endure, the kid is such a treasure. Sometimes I forget to see through the daily struggles and look for the kid hiding behind those autism eyes. The one that brings me so much laughter, so many smiles, complete joy, a heat full of love. My son, my Kaeden.

"Goodbye, see you next week" I told the lady from the outreach program as she left my home. I closed the door behind her and stood in the hallway, lookign up the stairs. My son will be home soon. I can't wait to run to him and pull him into a hug. Let him feel how proud I am of him. Let him feel my love for him. I hope that when he arrives home, I will be able to touch him. I hope it won't be 'an autism day' and he pulls away. I hope his eyes will be clear and not shiny with the look of autism clouding them. I will make him a snack and have it ready and waiting on the table. That will make him happy. Then maybe I can plug into him before he runs to the comfort of the tv, sound blaring, out of reach. I am the mom of an autistic kid. My life revolves around hope.

2 comments:

Jade said...

I know only too well how time and punctuality can effect families, especially the population I work with. I make it a point to always be 5 minutes early. I'll just sit in my car for that 5 minutes, but I'm always on time.

I don't care at all for the woman's attitude toward helping K. She should have more confidence in her ability and her method of intervention. Ohhh how I wish you and I could just talk for an hour and sort out some of K's stuff. It drives me crazy that you live so far away and that I know I have information and techniques that would work for him and you. But it required information exchange. Questions and answers. Explanations and ways to follow through. :-( unfortunately thats tough to do through email or blogging. I can only imagine how frustrated you must be! I'm going nuts and he's not my son. The things you've told me, and write about are all things that I address in several different ways with some of the kids I work with.

K may be that special kind of kid that requires one to think out of the box to get his attention and understanding. So many professionals in this field become complacent and only approach things one way. That doesn't work for all kids.....

So my friend. I hope this woman is able to provide you with some help and relief from some of the stress, but I really hope we can connect soon for a longer period of time to talk about stuff. We were kinda rushed last time and cut off unexpectedly... :-(

So... Just a FYI.. I am off tomorrow morning (2/17). So I am free from 7am-12 pm my time if you have time to chat. and the same on Thursday.

Hugs to you my friend. Have faith that things will get untangled. I will make it my personal mission!

Tanya @ Teenautism said...

You describe Kaeden so beautifully - your undying love for him is evident in every word.

And you are so right - our lives do revolve around hope.