Dare to Listen

I want to be able to make it on my own someday.

I must admit that my future seems forever ahead of me with life going by so quickly. Living a life, and inhabiting a body, that needs a great level of support, puts me in the position of always relying someone for something. I wish this was not the case, and yearn for my independence.

What I do sometimes is imagine a life free of all of my limitations in the future. I want to realize this future, but I depend on the people in my life to do their part to help me get there. Rallying these special people is not impossible, in my experience, when they have the time and energy to commit to it. But being able to get someone, who can wear the badge of great commitment for the long haul, is not easy.

I like to believe that I will get it together enough in my life to get what I want out of my future, but this will depend a lot on the support I have access to as life moves on.

Great to be back in the blogosphere. 

Feelings are riding high these days. I might explode. There are so many things that I have to do to have the same opportunities as others, but then, each time the opportunity comes to fruition, it is the worst experience because I am not fully included. Having to endure this reality every time is exhausting. Happy to be included, but not when it is not my idea of real inclusion.

For me, there are some basic guidelines to full inclusion. 

I have to have a communication partner that is competent. Writing is my sole way to communicate what I think and feel about how I am treated by others. What I experience is that when there is amazing support for me at the table, I stand a chance of being heard and really valued by everyone there. When that support is not in place, then I am seen as having nothing to contribute. Years of being ignored have been hard for me to get through and still impact me now. What I need is simple. I have to be able to access people who know how to strongly support me with my communication and regulation needs.

I have so much to say about really having the time I need to think through what is being discussed. Getting my thoughts together to answer an important question that I actually care about takes me a minute. I want to really emphasize that having time to prepare my thoughts ahead of time makes a world of difference. This means that if there is something important to discuss, I need the discussion points ahead of time. 

Also, I need to have a lot of time to respond when I am in the middle of a live conversation. Learning to wait and not talk over me while I am responding is so difficult for so many people. Freedom of participation is taken for granted by so many. What I really want as a disabled person is a way to be invited to have a real voice. 

What I think is the biggest and most frustrating problem is the lack of presumption of competence amongst people who should know better. Family members are often the worst culprits because they get worn out by my making so much trouble with my body. Then there are the professionals having to put their actions together with what they claim to know and think. It is too hard to process when there is still a huge gap between the two. Wanting to be seen as very competent is what steers me towards advocacy work, but it can be so disheartening. 

What I hope to see are more seats at the table with an interest in actually having the support I need to be a full participant in the conversation. That is my hope for the future. 

When my grandpa passed away, I needed the support I must have to communicate the many feelings I was experiencing, but there was no one that could step in to support me during this tragic time. My mom needed to support many others – including herself – and went home. Some of my challenges have found a way to diminish over the years, but I see now that doing it on my own does not work so well.

A lot of my hard work becomes obsolete without rich support. I have to make it clear, many of my dad’s great family members stepped up to the plate to try, but I needed more. Their help was much appreciated, but I was in my own silent world throughout the time my mom was away. This did not help my hard to feel intense sadness dissipate. When I have no ability to say what I have to say, then days are the hardest.

The things that I so much needed to say must be said now. Hard to find the words that I have to get out, but so much has happened in my life because of my grandpa’s love for me. He was in my life from the start and I loved him deeply. Our family will not be the same without him. I miss him.

I participated in a workshop with the amazing Rebekah Taussig over the weekend and wrote this poem. Rebekah is the author of the book, Sitting Pretty. You should check it out!

Emotions like water running fast

Save me life raft

True to the deepest core

I feel so much more than most.

Speak to me 

And you will see

That I have so much substance

What I need

Without a doubt

Is to get my feelings out

In the open

To be heard

Understood

Figured out

When these feelings are sorted through 

I have some way to erase my doubt 

That I am heard 

When I shout

For my worth to be seen

Pity makes my soul weep

For you and for me

Life is – in my shoes –

Paced differently

Can we align

To work together 

For more understanding?

For when we understand what the other needs

Great things unfold, naturally

I wrote this personal essay for a writing class this year. Today marks the seventh anniversary of the moments I write about in the essay. There are so many people who have supported me along the way. I am thankful for my good fortune and for having so much love and support. Having been a lot of the time encouraging others to see how they can live more substantial lives through making a commitment to education and communication means I better celebrate this day for all of us. There are so many more who live in silence and must find their way out.

Feelings of terror and excitement overwhelmed me as we drove to Soma’s office. Our hopes for my future were riding entirely on this opportunity. How would I do? What would my mom think of it? Would I finally break out of my prison of silence? With these thoughts racing through my mind, we pulled into the parking lot, and there she stood, looking at her watch impatiently.

I had been living in a prison of silence for ten years and I wanted to be set free. 

I had always loved words and often made many interesting stories in my mind, but I could not speak them because of my motor disability. My only hope was Soma. My friend, James, had made it out of his silent prison with Soma’s help and I desperately cried out in my silence to her, “Please save me!” 

“Ready?,”Soma said with no introductions as we stepped out of the car. She was all business, and I was more than ready. I jumped in the air with excitement and ran into her waiting room. Having to scare my fears away and make space for hope again was exhilarating. 

Calling out information in her smooth, rhythmic way, Soma, the champion of people like me, introduced me to the world of spelling out my thinking letter by letter. As Soma ripped paper and asked me to select my answers to her interesting questions, my head nearly exploded with determination to show my gifts to the world. I needed to show my mom that these things were coming from me. I listened intently to what Soma tried to teach me. Then I grabbed the pencil and started to try to spell out my answers on the letter board. I was doing it! Could my mom see how important this was to me? 

Having this opportunity to see Soma lifted the chains of my imprisonment right off. Getting them to stay off would be my next battle. I needed to see to it that my mom would take the time to learn to spell with me.  I tried to shout out to her, “Dare to do this, Mom!” but, like always, my words sat in my mind, wanting desperately to see the light of day. 

“It’s going to take a lot of hard work,” Soma said to my mom. “That’s okay,” said my mom in reply. I really wanted this to be true, but I also knew that my mom was already so tired from everything that she was doing to try to support me. Finding our way took us to so many places where my mom would be told another thing to work on with me. Trying one more thing always tired her out even more. “Please use your life’s energy for this, Mom,” I prayed silently. 

Spelling with my mom took every inch of commitment and some tears too. Aligning my body with my mind always takes tremendous effort. Thankfully, we give our all to nearly everything, and now my mom is my best communication partner. The many words that I have been able to communicate since seeing Soma are living in this world because my mom rolled up her sleeves, trusted her instincts, and spent many hours allowing me to see what I could accomplish with proper support. Determined and committed, I promise to do what I can to save others from their prisons of silence.

Finding ways to open the minds of non-autistics to the lovely hearts and minds of autistics is my goal this month. A lot of my life so far has been spent asking myself why I am so often misunderstood. Yes, my body always has a mind of its own, and it is often acting on its impulses, but my heart is pure and my mind is sharp. However, many cannot try to see through my body’s impulsivity to the beautiful, intelligent, shining star underneath. This makes for what I like to think of as misunderstanding the many things that make up so much of me. Trying to get over this always makes me wonder what I can do better to spend time advocating for more understanding.

When my body is acting on its impulses, my brain is shouting, “Stop!”. Being trapped between an impulsive body and a superior intelligence whenever I try to engage in interaction with people feels incredibly frustrating. What I see is many kind looks of confusion and sometimes deer in the headlights looks of confusion. There are so many gifts within me that are meant for the world to see, but when people become challenged by my body’s impulsivity, doors close to the possibility of understanding.

A lot of the differences I have become the bridge that I create to share in life with my daring sister and parents. My differences enable me to have tremendous compassion for others. When I try to show this compassion it can be hard to have my body make the movements I want to make to act on my feelings. My body doing some awkward movements makes it hard for others to see my caring heart when it is feeling some serious emotions. I hope this helps people think about my body and why it is so necessary to look past it to the possibilities within.

April is the month typically set aside for Autism Awareness. Listening to autistics is essential. Can we try to get in an expansive mindset and each make a commitment to raising awareness about autism, to increasing acceptance of autistics as full members of society, and to embracing autistics as they are in their full and gorgeous beauty?

Giving to others does much for the soul. This is the time of year when many gifts are given to those with whom we are close in heart. When we give gifts without thinking, we are just going through the motions, but we have more to us than doing life without thinking.

We have so much capacity for love, joy and many things in each one of us that we have been given so that others may receive. Love is the greatest gift of all. It is free and never runs out unless you let it. Giving the gifts that you have been given lifts the spirits of others and encourages them to share their many unique gifts too.

What we need is to work on loving ourselves unconditionally and, in so doing, freeing up our beautiful gifts so that they may be given freely. This is what I hope to give this holiday. What about you?

Days at home without much contact with friends and extended family have been so hard, but being thankful in spite of the difficulties is important and necessary. Giving thanks for our blessings, and making the connection that life has its silver linings can work wonders on our emotions. In my life I must always try to find the positive in the situation because things are often difficult for me and if I let the negativity take over, then I get so sad. I see that there is so much power in mindset. Changing my mindset helps me feel better. Thinking about what you are grateful for shifts your mindset from woe-is-me thinking into so-great-to-be-me territory. 

Getting out of my own world helps me see that my problems are not as big as I thought. I have had the opportunity to volunteer my time with my mom and have been delivering food to families that need extra help right now. These deliveries take me out of my comfort zone and help me recognize that I have so much to give and a lot for which to be thankful. I highly recommend trying to find some way to give your time to others in need. 

I need to say that I am so grateful for my family and for my education that I have been able to access. I have been very fortunate in my ways. Tomorrow we will be celebrating Thanksgiving without our usual gathering of my grandparents and their friends, but I still plan on making the most of it with my attitude of gratitude. I encourage you to save that expression and remember it throughout the day tomorrow and beyond. 

So much can happen when you have some new perspectives to consider. 

A lot of the time people see the way my body moves or the way my words come out wrong and they make assumptions based on their limited observations of me. Are these observations accurate or not? Being apraxic and autistic makes it really hard to be the person I am on the inside to the world on the outside. 

Are we every time making this life shaping mistake when we make observations of one another? 

A lot of the observations that are made by others of me become judgments about my worth, my intellect and my place in the social order.