You Are Allowed to Turn the Special-Needs Talk Off

SPECIAL NEEDS TALK OFF

I know it’s probably kind of weird that I posted this right in the middle of Autism Awareness Month when we want to get people talking about autism but…sometimes I have the need to turn the special -needs talk off. Does that happen to you too? Maybe it’s time we, as autism moms, also bring awareness to that part of our lives.

There have been times when – at a banquet, at church, some fashion function,  a gallery opening,  an informal get together  –  I have been approached by people wanting to talk to me about a movie they saw about autism, or about a friend of a friend whose child just got diagnosed. They give me books about autism, movie recommendations, information about doctors promising a new cure,…it can sometimes get a bit overwhelming when all I want to do is be Nellie and have a good time. Like an actor who gets type-cast because we are used to them playing a certain part, I imagine it’s the same for special-needs mom bloggers who talk about their children all the time in hopes to bring awareness. We want awareness but sometimes we need a break.

What people don’t realize is that, with two kids on the autism spectrum, my life is consumed with special needs talk. From the slew of professionals at my finger tips who are/were coming to my house every day, to my own online research, to discussions I have with my husband, and finally from my kids themselves. At times, it can be a 24-hour station.

But how do you turn off the special needs talk? First of all, you have to realize that people mean well. They love you and they want to help, or show that they can relate. So, when I really don’t feel like talking about autism,  I try to be cordial, and in a very nice way, tell anyone who wants to broach the subject,  that today I will not be talking about special needs anything, plain and simple. Give them your number/ e-mail and tell them to contact you later.

It does help if you have something planned to say ahead of time if the special needs talk gets out of hand. That way, you don’t come off as defensive or rude. I politely interrupt and tell them, “I don’t mean to be rude, but I had a crazy day with my kids and I would like to talk about other things besides them.” The people who love you will not get offended and will understand. Those are the people that matter.

How do you handle the special need chatter? Do you feel comfortable shutting it down? Are there other ways to go about it? Always eager to learn.

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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.

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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

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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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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

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

On Having Nice Things When you Have a Special Needs Child

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I love it! Looks like Kandinsky’s color studies – sorry for the dark photo

The other day, after having a blank wall for months, Jon came home with this beautiful work of art and said “we will try again.”

The last couple of paintings displayed in our living room were destroyed by Dan. He either broke the frames or peeled paper or paint (depending on the work’s medium) off of them. As a person who works in a museum, I felt physical pain when I saw this happen and resigned to not having any art work in the house. “I work in a museum, I can see art there”, I told myself.

The other day, a friend told me, “you must be someone who loves beautiful things.” Well, I do, but I know it’s difficult to keep them in tact in the house with Dan running and jumping everywhere. My house is pretty plain. I have no grand displays of art, picture frames, or beautiful objects.

When hubby brought this work to the house, it was like he was bringing a new baby home and I was hoping and praying my older child did not hurt it. Art IS my baby! Don’t hurt my baby! Dan needs to be taught.

I love my husband because he refuses to give up on us having a house filled with the things we love. For me it’s paintings and for him, fish tanks. He constantly asserts that we will not play down to his autism. “Autism shmautism”, he says, “he has to learn.” I have to learn too. With Dan, repetition is key, and I tend to give up too fast.

I’m grateful for his persistence. If art is my baby, I need it close to me. I don’t want to settle for visitation rights.

Now hubby wants us to get a dog…hold up man! One beautiful thing at a time.

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*This is a vintage post from 2016

 

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.

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