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

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.

*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.

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I Caught a Glimpse…

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.

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.

*Vintage post from 2015

My Mom Likes to Sew

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.

*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

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?

*Vintage post from 2012

Creating under Difficult Circumstances: When Things Fall Apart

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.

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!

*Vintage post from April, 2015

Autism Acceptance/Awareness Starts with Me

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.

*Vintage post from April 2013

Tips on Navigating a Museum/Gallery Space with a Special Needs Child

As a museum educator with a special needs child (SNC), it is no surprise that I am interested in museum access. During winter break I usually take my boys to at least one museum; a children’s museum or an art museum with programs for special needs children. This week, however, I veered off script.

For weeks I have been wanting to catch an art show at a nearby gallery. Although this art space was not ideal for my youngest son who is on the autism spectrum, I felt that my older son would benefit from this display as it was in line with what he was learning in school. But again, this was a regular gallery, a college art gallery, a gallery that has no provisions for a special needs child so do I dare take my sensory needy, touchy feely, restless child to this kind of gallery?

I bit the bullet and did it. But not without some planning. Here are my tips on how to to enjoy a “typical museum gallery” with a special needs child like mine:

1. Keep it local

It just so happened that the exhibit I wanted to view was in my borough, this worked out great for us. If you want to spend the day looking at art with your SNC, check out local galleries and museums. The commute is shorter, and should things go south, at least you will be close to home.

2. Call ahead of time

I was already aware of this particular gallery’s space and knew it would be a good choice for us. Calling ahead and inquiring about the gallery/museum’s physical layout and what they have to offer, cuts anxiety and helps you be prepared.

3. Choose a small gallery or museum

A smaller space might provide a sense of calm for your child and help you navigate the area better with him/her. It also gives you a sense of completion. This helped us this week during our visit. I got to see every single art work which made me feel quite accomplished.

4. Early is best

Arriving at your destination earlier in the day also provides a sense of calm as there will be less people, less distractions, and less sensory overload.

5. Put something in your child’s hands

My son loves to touch EVERYTHING and EVERYONE. That’s who he is. So if I take him to a place where there are objects begging to be touched, I better offer something that is as equally enticing. My son loves strings so I usually give him a string when we go out to keep his hands busy and keep him from biting himself, which is another issue. But you might also consider something textured, one of his own paintings, a sensory toy, anything that will keep his hands off the art work.

6. Plan to eat afterwards

If you managed to pull this off, it’s time to celebrate! I knew there was a pizza place located right across the street from the gallery so the plan was to eat there afterwards. Unfortunately I didn’t follow rule number three and by the time we left the gallery, it was well into lunch time and no seats available in the restaurant. If I would have followed my own advice, and left a little earlier, this would have worked, and been the icing on the cake. Instead, we ate at a place closer to home which turned out okay, thank God!

I hope some of these tips can help you enjoy art with your SNC even if the museum/gallery is not as accessible as you would hope. In less than ideal situations it’s always about finding a solution and enjoying time together with the ones you love.

*Vintage post from 2016

On Having Nice Things When you Have a Special Needs Child

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.

*This is a vintage post from 2016