I wanted to write about finding strength and the positive.
I feel like I need to write about this because so much of the time, when you have a child with special needs, you can find yourself working hard towards a goal.
It is different for all of us. But we know that we are trying so hard for our child.
Will they talk today?
Will this therapy help them swallow?
Will they be able to make that new sound?
In my world, the goal for us is “Will Elizabeth be independent?”
Such a nice neat sentence at first glance. But so very complex when you think about it.
What actually is independence? I hear Elizabeth telling me almost daily, that this is what she wants to be.
I love that… I truly do.
But what does that mean when your child has special needs? I mean if I were to put into measurable goals? What is it?
In my thoughts and opinion, she is independent. She has great self-care. She knows how to wash clothes, clean, take care of herself. She knows how to text, call people, safety and more.
But is that truly independent? She is 20 years old.
What would a typical 20 year old do? When phrased like that, we are lagging behind.
So in a world of special needs goals… how does one make independence a goal?
A goal without making us all feel less than?
And this has been my dilemma for a couple weeks. It all started with a great conversation with Elizabeth.
She shared her thoughts and feelings and together we made a plan to help her continue her growth towards… independence. Which was and is great until, every time she needs help. She gets frustrated and says “I want to be independent.”
I want her to know that she is independent.
I want her to know that she is strong and will get there.
But right now, she is seeing the word as a goal only. And thinking she either made it or failed.
I want to share that I see the positive in all she is doing in life. The strengths she has. The desire to grow.
But I also need to share that finding the strength when the struggle is big is hard. I know because right now, it is a struggle.
I want the independence she desires to be the goal… that we are working on.
Meaning in many ways she has achieved it… now we grow more in it.
These special needs she has, do not go away. They like to show themselves at tough times, emotional times. They like to affect things just enough to remind you they are there.
But, God love her, she is strong and works so hard.
So to others who are stumbling a bit on your journey, please know, that the positive comes from really looking at your child and seeing how far they have come and knowing that you will do anything for them.
And finding the strength comes from knowing you will do those “anythings” no matter what.
I plan on having a good talk with Elizabeth today after school. She needs to know she got to her goal. And we need to see that as this team we are for her… she will simply grow more.
I wish everyone a peaceful month.
Michele Gianetti is a mom of three, registered nurse, and published author (“I Believe in You” and “Emily’s Sister“). She writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.