If you can’t Find a Solution, Change the Rules

CHANGE THE RULES

My Dan has sleep issues. It has gotten better, but he still occasionally wakes at 3 AM craving food, sensory play or just wanting to be next to me.

At one point in time I was EXTREMELY sleep deprived. Not just one night, not a couple of months, but two years worth or more of sleep deprivation. I am never going to get those years back and my wrinkled, saggy eyes are paying big time for it. So, at that time,  I got to do things that might seem unconventional to some. Let me explain…

It was hard to find a solution to Daniel’s sleep issues. He didn’t respond to anything for a long time. Young mothers are always taught this rule: when the baby sleeps, you sleep. However, when Dan’s waking hours consumed me, his sleeping hours had to feed my soul. I was/am an artist mom and I need to create! So what this meant for me was that while he napped, I wrote, sewed, or screen-printed. This got hard to sustain long term, though, and I eventually crashed with him during his nap, but you know what I mean. I had to change the sleeping rule to fit who I was.

Same thing happened with his birthday a couple years ago. Dan had been waking up everyday two weeks prior to his birthday that year. I had previously told the teacher that I would come and celebrate in the classroom like I have been doing years past. The night before his birthday, Daniel finally gave me a full nights sleep. It was his birthday but I got the gift! It was the first time that I had felt alert and ready to work on my blog, my website, my sewing projects. I was still planning on going to the classroom but with much hesitation. I didn’t want to give up this valuable time! I felt I was giving up my day of productivity to go into the classroom for 45 minutes all because it is something I do every single year. The teacher ended up e-mailing me and said that she was not going in that day because she did not feel well. This gave me permission to call out too! So I called the school and told them I wasn’t going to celebrate Dan’s birthday in school, but at home instead. I did feel guilty and thought “how horrible everyone will think that I am for not bringing in a cake to school.” I went on beating myself up when I thought; what people don’t see is that I have been patiently up with my child for two weeks straight, loving him, singing to him, rocking him, hugging him, hoping that any minute now, he will dose off to lala land. During this time I did not beat him nor yell at him. God sees that, I see that, my family sees that. I deserve a productive day to myself where I am alert and ready to work. This has to be enough for a rule change.

So sometimes there are rules that simply do not apply to you and who you are. Now, I don’t mean rules concerning moral behavior or that you are exempt from the law. By all means, follow those rules! But sometimes the rules typically given to moms (of neuro-typical or special-needs children alike) do not make sense to your particular situation.

This is a lesson I continue to learn.

*Much of this post was written six years ago and modified recently.

my signature2

Advertisements

How Dan Incarnates Me as I Tend to His Body

IMG-2133

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.

my signature2

I Caught a Glimpse…

Screen Shot 2018-04-05 at 12.49.39 AM

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.

Screen Shot 2018-04-05 at 12.49.44 AM
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.

my signature2

*Vintage post from 2015

My Mom Likes to Sew

Screen Shot 2018-04-02 at 3.11.29 PM

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.

my signature2

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

 

 

Autism Acceptance/Awareness Starts with Me

Screen Shot 2018-04-02 at 3.01.33 PM

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.

my signature2

*Vintage post from April 2013

Don’t Run Away from the Runway

DON'T RUNAWAY FROM THE RUNWAY

Normally, people are pretty cool with my Dan’s flapping and loud noises but I caught a couple of weird looks from people when we went out the other day.

I have to admit, I don’t always feel comfortable being on display this way. I want to share my creations, new items in my shop, my museum talks…my frailties, not so much. But because of Dan’s unique mannerisms, he has become my agent, so to speak. He draws people to me giving me opportunities to tell my story and point people to God, the source of my joy.

You are out on display for a reason, a deeper purpose. You just have to trust, show up, and strut your stuff, vulnerabilities and all. Don’t shy away from the attention. Tell your story. Don’t run away from the runway.

my signature2