Tag Archives: future
10 Jun

Silently planning a future

I am currently listening to a webinar about planning for the future for Oli. PERSON CENTERED future planning, with an emphasis on person centered, meaning that I am supposed to include my child and her voice and her choice about what she wants to do in the future.  I am supposed to encourage and support her to figure out what she wants to do in life and empower her to fulfill her dreams.

What?

Ummmm…. I am supposed to include my child in planning for her future when this same child cannot even tell me when she needs to use the bathroom.

This may not be the webinar for me. Did I sign up for the wrong one? Did the advocate that suggested this webinar, the same woman who has known us since Oli was 2, not realize that she literally has no voice? She is fantastic and this is not a dig about her, but more about the system itself. Where is the webinar for kids like Oli? The answer is that I don’t think they exist. Not like they have them for kids who can in some capacity participate in the decisions surrounding their life. What kind of choice can I give my silent child?  A child who is no longer a child but a 14-year-old young woman who still relies on her mother for every single need.

I absolutely need to plan for her future but planning for her is so very different than when I think about the future of my other children. There is no her without me. There is no future for her that does not include me. No matter where she goes or what she does I will go, and I will do as well. As I sit here and listen to this lecture telling me that it is not my choice as her parent to make these decisions but her choice as the person with the disability, I can only laugh.  And cry a little bit too.

I started this blog 7 years ago. 7 years. Half a lifetime ago for Oli and I wish I was sitting here telling you that so much has changed. I wish I could tell you that together we were sitting here planning this fantastic future for her and I was pushing her to dream hard and dream big, that the sky was the limit for my beautiful girl.  Right now, I can only tell you that the world, her body, and her mind have placed so many limits on her that I don’t even have the faintest idea on how to navigate them.

I know that I need to plan. I will blink and she will be 18. I will need to stand before a judge and hope that he grants me guardianship. A single tear will fall, and she will be 22. I will need to find a place to fill her days because she will no longer be allowed to attend school. A rose will be thrown on a casket, and I will be gone. She will be alone. Who will take care of her then? I think that is the most unfair thing about Oli’s disability. The world moves on and I grow older, and it seems that she just never does. She remains the same.

It’s so unfair. I see glimpses of her in the way her whole face lights up when she laughs. The quiet intensity of her jaw as she listens closely to her surroundings. I see rays of sunshine glow on her skin and I think about how different our life could have been.

I use that word a lot.

Our.

We.

Us.

 I almost can’t even think about her as a singular person, she is so entwined in the very fabric of my being that I honestly don’t even know who I would be without her. When I think about planning for her future, I must also think about mine. What will we do? Where will we go?

In a few years it will only be Oli and I. Living out our lives as one. I always imagined that we would move to a beach in Florida and live out our lives like a couple of Golden Girls. Maybe we can meet another mother daughter duo and all live in a fabulous wicker filled house.

I don’t know what the future holds. I know that our life in no way, shape, or form, has turned out the way that I thought it would have 7 years ago when I started this. So much has changed. Some for the worst but mostly for the best.

Oli is happy.

I am happy.

I look forward to dreaming big dreams for my girl until the day that she can share her own dreams with me.

 Maybe she will one day.

Maybe.

But she might…

8 May

As soon as my tires hit the gravel and I pull into R.O.C.K where Oli rides her horse, she gets THIS look on her face. She knows exactly where we are and what is about to happen. Then I say, "Oli we're HERE!!! It's time to ride your horse!" And she starts frantically clapping and yelling. She knows. No one can tell me that she doesn't understand. Just look at her face. I KNOW she knows.

As soon as my tires hit the gravel and I pull into R.O.C.K where Oli rides her horse, she gets THIS look on her face. She knows exactly where we are and what is about to happen. Then I say, “Oli we’re HERE!!! It’s time to ride your horse!” And she starts frantically clapping and yelling. She knows. No one can tell me that she doesn’t understand. Just look at her face. I KNOW she knows.

I posted this picture on my facebook page today. I posted it to show an example of what one of Oli’s expressions look like. This is an expression of “I know what is happening and I’m going to sit really quietly for a second and then I’m going to get really excited because I love what we’re about to do”. She has LOTS of these looks.

Some people have told me throughout her life that because she has an intellectual disability, is delayed and has autism, she doesn’t understand. That she couldn’t possibly understand because she doesn’t speak and because her cognitive development is delayed. We know that she is missing some of her genes off of her 14th chromosome. We know that this has affected her development and her learning. We know because she has done everything later than everyone else. We know that. I know that.

I know that despite being told that she may never walk independently, eat independently, have anticipation of events, be aware of her surroundings, have a sense of humor, the ability to laugh and to love, be funny, be brave, show strength and determination, cry, be sad, be mad, get frustrated… she has. I know that she has proved those people wrong every single time. And I know that she DOES understand. She does. I know because I KNOW her. Sometimes I feel like I know her better than I know myself. For whatever reason, she just can’t tell me what she understands with words.

I know that I may NOT know exactly what she is capable of in the future, but that I will ALWAYS give her a chance.

I know that I will ALWAYS believe in her.

ALWAYS.

That’s my job as her mother.

To believe in her despite all the odds, the challenges, the setbacks, the regression, the frustration and tears. Despite text books that tell me what she will or won’t do. Despite well educated doctor’s opinions and the opinions of the rest of the world. I will believe in her. I will never expect her to do less than her very best and I will never accept the words “She will never…”.

Because she might.

Because she probably will.

And even if she doesn’t do something or say something, I will go to my grave believing that it is still possible.

Some may call that naïve or say that I’m in denial. I’m not. I know that there is always the possibility that she will never move out, go to college, or get married.

But she might…

I will never ever be able to look into her sweet face and not see the sky as the limit. I will never take anyone else’s opinion on what she will or won’t do as fact. Oli will have to prove it to me. And even then, I will still push her. I will push her to have confidence and believe in herself. To set goals and achieve them. I will push her to develop her own sense of identity and to be kind. To love other people and to be respectful. To be understanding and to be grateful for what she has. To live and to laugh and to never look back. To view past mistakes as learning opportunities and chances to grow. To greet each day with optimism, and with a smile on her face, and to act better than she feels. To know that every day will not be perfect, but that’s okay. I want to push her to do her best with what she has and to be proud of who she is. I want her to be prideful instead of pitiful. I never want the world to take pity on her and I never want her to feel like she deserves it when they do.
Because they will.

She may never be able to do these things.

But she might…

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