Don’t Hide

Dan attracts A LOT of attention, and it’s not always positive. There’s no place to hide when I’m with him. He makes noises, flaps his hands, skips and jumps as we are “walking” to our destination. Normally, people are pretty cool with his behavior 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.

Last year,  we went to the Natural History Museum and on our way back on the train we met a man who started asking questions about Dan, the train was crowded, Dan was making noise and, of course, all eyes were on him. Long story short, our conversation led to a talk about God and I ended up inviting him to our church.

“No place to hide is the only place to be”

-Seth Godin

So, if that unwanted attention leads someone to God, then, here I am Lord. No place to hide is indeed the only place to be.

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.

*Much of this was written two years ago.

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God Does Not Care that you have a Special Needs Child

God is in the business of resurrecting! Let me explain…

This was the title of a sermon given by Bishop Michael Lunsford (may he rest in peace) , five years ago.

When he announced the title, I was like “wait, what?” We are so used to hearing that God cares that this caught me off guard. He then went on to talk about his difficult upbringing, fraught with hardship and dysfunction and how unlikely a candidate he was to be ordained a pastor, let alone a bishop.

God didn’t seem to care that this Bishop came from a family that clearly had issues. He was called anyway. I just want to encourage you that, whatever you are going through, it’s not the end of the road for you and your dreams. God doesn’t care about your background, or what happened to you, or about your crazy dysfunctional family, or the fact that you are broke, or maybe, if you are like me, that you have two special- needs kids . He wants to use you anyway.

When Dan was born and I decided to stay home for good because of his diagnosis, it forced me to think about what I really wanted to do with my life. Could God possibly use me now that I was a special-needs mom to two kids? My previous job as an art teacher re-introduced me to art-making and that part of myself was re-awakened. I opened up my shop, http://www.nelarte.etsy.com (Nelarte- previously Nelesc Designs), when Dan was 14 months old, and although not running in full force,  it’s still there.

Seven years after opening my shop I re-discovered my other passion, art history and museum work, and returned to work with an amazing organization called Arts & Minds which combines my passion for people and art. And guess what? My experience as a mom to two children with autism is valued there.

What I am trying to say is that God is in the business of re-awakening, rediscovering, and yes…resurrecting!

That day, before that sermon, I was struggling with self doubt but I felt like God zoned in on me and told me loud and clear I DON’T CARE THAT YOU HAVE TWO SPECIAL NEEDS KIDS, I STILL WANT TO USE YOU. YOUR LIFE IS NOT OVER, IT IS JUST BEGINNING!

Today, God is telling someone reading this, the same thing.

*Stories like these will appear in my second book about self care coming soon.

You Are Allowed to Turn the 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.

 

If you can’t Find a Solution, 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.