“Get Up”: How God Always has the Last Word Even if my Son Doesn’t Have Any

 

GOD HAS THE LAST WORD

A long time ago I read an article written by a speech therapist that stated that children on the autism spectrum rarely speak after seven years of age. Along the way, In my quest to be at peace and accept Daniel’s autism, I stopped praying for his healing. I didn’t stop praying that he would grow into his full potential but I have to admit that I resigned myself to perhaps him not ever speaking.

Daniel speaks in other ways; he hums snippets of melodies that he hears in church, at home, and even in school. He’s extremely affectionate and very fluent in body language, and he has even said a couple of words, years ago, words I have not heard in a very long time. Until a couple of months ago.

On weekends Dan wakes at 5 or 6 o’clock in the morning. We always try to delay getting out of bed before 7:00 AM so this Saturday, when he woke up at 6:00 AM, as usual, we told him to lay down next to mommy and daddy, or sit in the chair in my sewing area, anything to stop him from running so early in the morning. We stalled him until 6:30 am when he came up to my face and said GET UP! “Get up”, as clear as day. I was stunned, we were shocked. I turned over to Jon and he was like , “did he just tell you to get up?” It was wonderful to have someone bear witness. So I got up like a flash and gave my, then almost 11 year old son, whatever he wanted.

Get up! Perhaps God was trying to tell me something. Maybe he was trying to awaken my faith, “get up Nellie and continue to pray. There is nothing impossible for me.” Why shouldn’t I pray that God fire up the part of the brain that controls Daniel’s speech? What if God was just waiting for me to ask? What if it wasn’t too late?

Ultimately I’ll be fine whether Daniel ever speaks another word or not. But I do have to remember to forget the timetables that therapists go by. It’s all about God’s timing, because at the end of the day, God has the last word!

“We humans make plans, but the Lord has the final word.”  Proverbs 16:1

 

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How Dan Incarnates Me as I Tend to His Body

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How to Put on a Shirt

This constant tending to my son’s body can be overwhelming and draining.

The other day I came home from a curatorial walkthrough at one of the museums I work with. The art and the curator were absolutely fascinating. I work in cultural spaces where I consistently having conversations about art and ideas, my intellect quite engaged… and then I come home to this…to this repetition, the constant training of putting on a shirt, or the brushing of the teeth. Still, at 11 years old, I’m still teaching Dan how to wipe his butt! I would imagine that my life will be a continuous series of teaching Dan how to tend to his body.

I have been reading Liturgy of the Ordinary by Tish Harrison Warren. In chapter 2 she talks about the body and says:

“We Christians believe in a God who, by becoming human, embraced human embodiment in fullness, right down to the toenails. Because of Christ’s embodiment, the ways we care for our bodies are not meaningless necessities that keep us well enough to do the real work of worship and discipleship. Instead, these small tasks of caring for our bodies, as quotidian as they are, act as an embodied confession that our Creator, who mysteriously became flesh, has made our bodies well and deserves worship in and through our very cells, muscles, tissues, and teeth.”

Truth be told, I rather look for ways that God is made evident in the museum though art, to uncover amazing “God in the gallery” moments. But God is also seeing fit to challenge me to find these awe inspiring God-moments in these daily, seemingly base, ordinary tasks of tending to my son’s body.

This is why Christianity is so appealing to me, because it posits a God that is incarnational. I like the fact that I can worship a God that came as a human body and knows exactly what it is to feel what we feel. Don’t get me wrong, I love the divine and the lofty, I get lost in the concepts and I crave intellectual stimulation and conversation. I need that in my life! But I also need to empathize , I need to feel and understand other people’s pain. Dan does this for me. He incarnates me, he makes me less snobby, more human and relatable. And when I can connect with someone over a vulnerability, that precise moment is instantaneously transformed into a divine one.

So I’ll continue to care for Dan’s body in hopes that he will eventually care for it himself. I don’t know how independent he will be but I do know that God is forming me into a caring human being through this special needs motherhood experience.

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How Mark Rothko Made it all Better at the Psychologist’s Office

Rothko and Dan

Dan and Mark Rothko’s Untitled (Yellow and Blue), 1954

Dan had a psychological evaluation the other day.

I used to leave these feeling defeated, concentrating on everything he couldn’t do, milestones he should have met years ago, still un-met. But I didn’t feel that way today. I know what he can do, I know what I can continue doing, and I know what God has done and will do. And when I have this “can do ” attitude, my emotions are protected, my spirit remains intact, I am held together.

I don’t think it was a coincidence that Dan ran,and sat underneath this Mark Rothko reproduction as we arrived in the psychologist’s office. I have learned to really appreciate his work in recent years, his paintings held together by color and light. He says about his own work, “the people who weep before my paintings are having the same religious experience as when I painted them.” Upon seeing this work, I didn’t cry but I felt a calm presence. Rothko also says that he “paints the finite and the infinite.” Where my finite, futile efforts end, God’s infinite power, in Dan’s life,  continues.

 

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Mixed-Media Prayers: Lord, I Want to Drive

LORD I WANT TO DRIVEThe other day, I made a big deal on my social media about my finally getting my driver’s permit. Why did I make a big deal, you ask? Because this has been the monkey on my back for years.

JUST GOT MY DRIVERS PERMIT PHOTO

I have accomplished a lot in my life thus far; I have two degrees, started my own creative business, I wrote a book, and as a Museum Educator, I work in some of the finest institutions in the city. But “real world” things, like driving, cooking, swimming, they elude me. I think it’s possible to be so preoccupied reaching for the stars that you forget the little things, these practical, simple things, that, if mastered, can ground you, add balance, joy, and much value to your life.

So the first thing I did, on the road to getting my driver’s permit, was to make a declaration. My birthday was coming up and my non-drivers license was about to expire. I refused to have my next ID be another non-drivers license, so in activist fashion, with a metaphorical protest sign, I declared that before my birthday, I was going to have a learners permit.

LORD I WANT TO DRIVE

But this protest sign had to be made real, and perhaps instead of a protest, it was more of a prayer. So, I incarnated this prayer, “Lord, I want to drive”,  in this small mixed-media work which I created last week and made sure it was in view. Every time I saw it, it put this prayer on the radar for me. I repeated it, “Lord, I want to drive” in the house, as I ran my errands in the neighborhood, as I rode on the train, and so one. This little mixed-media work affixed this prayer in my heart and mind so much that it caused me to take action. “But when could I take my butt to the DMV?” I asked. The week before my birthday was a crazy one and the only open day that I had was Wednesday, May 2. So I  put everyone on notice! I told my husband, the kids, my sister… mama was going to get her learners permit on May 2.

YOU HAVE FAILED - DRIVERS TEST

So I started doing the online practice tests three days before, then two days before, the day of… I failed lots of times until I finally passed with a 70. By the time I got to the DMV on May 2,  I did three tests in a row, all 70s. This was as good as it was going to get, and it was okay, this was not my masters thesis.

When I got to the DMV a wave of anxiety came over me, I was like “what the hay? This was just a written drivers test, not the road test.” I didn’t realize how ingrained my fear was. I was afraid of not passing, I was afraid of passing, getting my license, and then driving the kids off a cliff, everything came at me at once. Then I remembered my little collage,  took a deep breath, and prayed. I instantly felt at peace. Long story short, I passed and I was on cloud nine as if it were the biggest life achievement of all time.

I said at the beginning that I sometimes miss the little things chasing “impractical” big dreams and sometimes art can be perceived as impractical. However it was this little mixed-media collage, this work of art, that got my butt to the DMV. Art lead me to the practical. So I guess there’s a balance to be had. Perhaps, in poo-pooing these “mundane” activities, I have been, unintentionally, fueling the separation between art and life, the two things that I so desperately work to bring together in people’s lives. It took an impending birthday, a desire to drive, and a mixed media collage for me to realize that it’s all “real world”.

Now I have to get my butt to a driving school.

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A Diminished Spiritual Life for my ASD Child is not an Option

DAN AT CHURCH

Dan receiving his birthday card from the Pastor’s wife and her granddaughter. The love him very much! 

I requested a weekend respite worker from the agency that works with my son to help me care for Dan during church service on Sunday. It took a while but they finally found one, a very lovely young lady. She came over for a preliminary interview and met Dan. Everything was going fine until I started to enumerate her responsibilities with Dan while we all attended church, then her face changed and she stopped me mid sentence. “I’m sorry but I wasn’t aware that I had to go to church with you guys, I can’t, I’m of another faith.”

At first, I thought, okay, next. This is not going to work out. A diminished spiritual life for my child is not an option. But she was so sweet and teachable, and Dan really took to her. So the thought crossed our minds that maybe it would be a lot easier for us to worship and serve in church if Daniel was watched at home. We had struggled with him in service for so long. Maybe this was a possible solution.

So we tried it for a couple of weeks, Daniel stayed home with our new worker and my husband, older son, and I went to church. It went well, but I did miss Dan’s presence in our pew. On the third week, our worker had an emergency and couldn’t make it so we took Dan with us, like we had always done before she came along. We struggled but it was fine. That week Dan started humming the songs he heard during service that Sunday; when I am weak you make me strong, when I’m poor I know that I’m rich for in the power of your name, all things are possible, all things are possible, all things are possible over and over again. Then he continued with say the name of Jesus…He’s gonna make a way when you say Jesus…, also hummed repeatedly.

That was a particularly rough week and I needed those worship songs to get me through. I felt so encouraged with these reminders from God and they came through Dan because we took him to church that week! That’s when I knew that God was trying to teach me a couple of things; Dan has a spiritual life and I needed to watch over it, Dan needs to be in church to encourage the people the same way he encouraged me during that week, and more importantly, God takes pleasure in Dan’s worship. I needed to continue to take Dan to church because the reward will always be greater than the struggle.

Lord, I pray that no one, including me, would underestimate Dan’s spiritual life and his role in the church.

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*This post first appeared in April 2017 on http://www.sandrapeoples.com.

Sandra Peoples (M. Div, Southeastern Baptist Theological Seminary) is one of the leading voices in the special-needs community. She is the editor for Key Ministry and The MOB Society. She is the author of two popular self-published books: Speechless: Finding God’s Grace in My Son’s Autism and Held: Learning to Live in God’s Grip. She co-edited 30 Prayers for Special-Needs Parents. She also founded Special-Needs Parents Appreciation Month (which is celebrated in August).

Sandra is currently working on a new book for special-needs parents to be published by Bethany House Publishers and releasing in 2018 entitled, Unexpected Blessings: The Joys and Possibilities of Life in a Special-Needs Family.

I Caught a Glimpse…

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The other day, I went bowling with my church friends, we were ten, including moi. We met a wonderful family there, they were invited by one of our church members. They were a family of four: mom, pop, an eleven year old girl and a boy. The girl was so beautiful and well spoken; a dancer. I couldn’t believe she was only eleven. We talked about dance technique; chasses and ronde de jambes. It was the most intellectual conversation I had that night.

Then I caught a glimpse of the boy, the cutest kid. Tall and skinny, like Dan, soft brown hair, also like Dan, I asked his mom how old he was, he was eight, just like Dan. So, I caught a glimpse. A glimpse of what Dan might sound and move like if he didn’t have autism. This boy was funny and witty, I could imagine Dan being like that. He spoke fast and had the cutest expressions; I could imagine Dan speaking like that…and for that second, I could feel tears begin to well up. But just for a second. As quickly as these feelings came, they left. They left with the thought of my sweet Dan.

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Dan and I had the most amazing time, earlier that very day. We had a wonderful water play session in our back yard and I remembered his smile, the sheer joy over his face and body playing with the water; his chuckles and laughs. Later on, I remembered his touch, leading me to the sofa, so I could tickle and massage him. I remembered Dan, my son, his face, his laugh, his gaze, his smile, and in that moment, I did not want him to be anyone else. That beautiful boy I had met in the bowling alley had his own name (which I actually forgot now) and his own life, and his own face.

He was him and Dan was Dan
and he is mine and
I love him for who he is.

At this time in my life, I would not recognize Daniel if he talked and stood still.This doesn’t mean that we don’t aim for this and work hard so he can be the best he can be, but at this time, it’s not him and I want him to be him. I want Dan.

So I caught a glimpse of what Dan might have been and I looked away, content.

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*Vintage post from 2015

My Mom Likes to Sew

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My oldest (M) wrote this little composition last year. I was happy for many reasons; his writing is getting better, he chose me to write about (you had to choose a family member) and he focused on my sewing. The last part, well…it warmed my heart.

One of the most difficult decisions I had to make when my kids got diagnosed with autism was to quit my job and stay home with them. Working from home can be quite isolating and it is still something I struggle with. This is part of the reason I started this blog, an attempt at community and a desire to want to be seen.

When my oldest came home with this essay it felt like he was saying “I see you, I see you sewing, and I know you like it, and I know it’s your job, and you are contributing to our family.” One of the issues some kids on the autism spectrum have is their inability to see outside their world. M would spend long stretches of time, by himself, lining up cars and playing with strings. He still will talk to you, hours on end, about sports, not caring whether you are interested or not. The fact that he now comes home, asks me about my day, what I sewed, who I printed on what t-shirt, well, it’s just so amazing for me to see. He has come such a long way.

Peek a boo, I see you. I played this with M all the time when he was younger. Well, guess what. He now sees me too.

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*Vintage post from March 2013. I have since returned to work, as a museum educator, on a part time basis.

 

 

Serenity Prayer T-Shirt Refashion/Reconstruction

SERENITY PRAYER T SHIRT REFASHION

I love it when the message and the medium come together! This was one of my very first t-shirt transformations. Someone gave me this t-shirt ages ago and, of course, I didn’t wear it because it was super big. I did love the saying, though, The Serenity Prayer:

God, grant me the serenity to
accept the things I cannot change
Courage to change the things I can
and the wisdom to know the difference.

My oldest was about two years old and newly diagnosed with autism, when I rediscovered sewing again. Sewing refreshed me as a mother of special needs kids. It gave me a much needed break from visual schedules, tantrums, ABA, etc. Looking back, I didn’t consciously choose this shirt for my first recon project but how appropriate and timely was it, no? I sure needed this saying at this particular time. The shirt chose me.

Have you ever had a project that chose you?

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*Vintage post from 2012

Creating under Difficult Circumstances: When Things Fall Apart

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The other day, my Dan fully broke my dress form. It was already fragile from another one of his stunts but I had managed to put it back together. This time, a recent climbing expedition, completely broke her in two.

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This is what it’s like to create in my context, the context of having a child with autism who, although lovable and happy, is also quite impulsive and curious about how things come apart. I have to admit, when I saw Frida (yes, that’s what I call this dress form), I was pissed!

I sew and make things so I have a lot of enticing stuff to play with; zippers, tape measures, fabric, paint, brushes, etc. All of this feeds my sensory needs, so how can it not be tempting to a sensory needy child like mine. And yes, I have, on more than one occasion, sacrificed the zipper or piece of fabric so that he could be happy and quiet in my space while I sewed away, but the buck stops at my mannequins! He cannot have my dress forms too! I am constantly teaching my kids, especially my oldest, how to enforce boundaries, this is one instance when I need to take my own advice.

So, in an attempt to not have this break me or my creative spirit, I took a deep breath, composed myself, and went about trying to find a solution to this issue. We recently moved and I finally have my own creative, enclosed space but alas, it has no door! It is now time for a door, or a gate, something, because creating is my lifeline, and when things seem to be falling apart, it’s what makes sense and holds me together. I love my Dan to pieces but he cannot have a piece of my Frida! I need to figure out a way to lovingly enforce my boundaries for him concerning my personal and creative space. I have to admit, though, this part of self-care is tough for me.

If you create under difficult circumstances; sickness, caring for a special needs child, unsupportive environment, etc., I’d love to hear from you, swap stories, and learn!

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*Vintage post from April, 2015

Autism Acceptance/Awareness Starts with Me

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The other day I looked at my To Do list and thought to myself, “look at my world’s blending so nicely.” A little sewing, a little fashion, a little autism, a little working on my shop. I like this list.

In the past, I felt like I used to compartmentalize my life. Especially with this blog where, for a while, I decided that I would only talk about my sewing/fashion endeavors. Now, not so much. I enjoy giving people a glimpse into my life as a mother of a special needs kids who also runs a blog, an online shop, who likes fashion, etc. Sometimes my worlds collide and sometimes they blend nicely. This is Autism Acceptance and Awareness. As I accept my life and what it has become (the good and the bad), I can make others aware.

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*Vintage post from April 2013