Tuesday, June 14, 2016

"We Will Try Again": On Trying to Have Nice Things When you Have a Special Needs Child.

Sorry for the dark picture.

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. 

Monday, May 30, 2016

The School Bus Matron, On Being Missed when You're Gone

This has been a tough year with Dan's school bus matron. She doesn't smile and she doesn't look me in the eyes, ever. These first two, by all means,  are not deal breakers, but she also gets extremely defensive when I ask her any question about my son. If Dan comes home without his hat, or stuffed animal, or worse, with a scratch on his face, I ask her about it! I would ask anyone who was serving as matron. But she takes it personally, as if I were accusing her of something. My son has limited language and I see the matron as one more person containing information about his school life. Information he cannot give me. 

At first I thought this miscommunication was due to language, that she wasn't understanding what I was saying, but I speak Spanish (her first language) rather fluently, and after our first heated discussion, I think we were understanding each other quite well. 

My first recourse was to complain. I called the bus company supervisor and explained how the matron aggressively responds when I simply ask a question concerning Dan. Her supervisor said she would talk to her, but it didn't make a difference. 

Then I thought, "you know what? Maybe she had a rough life, let me kill her with kindness. Let me model for her what a cordial, decent human being looks like." So I started to smile at her even more, tried to meet her gaze, tried to find any little thing to compliment her on, "oh, thank you for calling me the other day telling me you would be late." She barely looked at me and said "mmhmm." 

"What's with her?" I thought. Was she raised by wolves? Is it me? Is she happy-miss-sunshine until she gets to my block? I don't understand.

I asked my husband how she interacts with him. He said she was fine. 

I asked the babysitter. She said she was okay with her. 

Then I thought of the bus driver. He is stoned faced during our interactions. He doesn't defend her but he doesn't concur with me either.  I guess he has to ride with her and it might be awkward driving back with her if he agreed with me. Again, I reflected, "am I being an overbearing, neurotic helicopter mom? Am I going crazy here? The only thing I could surmise was that she acted this way with me because I was the only one asking questions. Again, no comprendo

Then one day, a different matron came to pick up Dan, we'll call her Betty. She was delightful from the get go. She had the biggest smile, looked me in the eye as she greeted me, and then acknowledged Dan with a loving touch to the shoulder. It was love at first site for all three of us. When Betty appeared dismounting off the school bus for the third time,  I asked the bus driver what happened to the other matron. He said the switch was just temporary, that the matron with the stinky attitude (my words) took a sick leave and would be back in a month. I couldn't hold it in any longer and blurted out how much I loved this matron, what great a job she was doing, that the other one was always so sullen and had an aggressive attitude, etc. I just let it all out, all I was feeling for the past three days. And guess what? He confirmed what I was feeling! He also must have had some pent up feelings to release because he then disclosed how miserable the other matron was, what a bad attitude she had with parents, and how wonderful it was to ride with this new matron. Finally, vindication! I wasn't crazy, someone else saw it too, he saw it too. 

There is such power in bearing witness. Knowing that someone sees what you see. Just knowing you're not crazy. 

So morning and afternoon, Betty and I would work together in the hand off of Dan; we would smile and joke, she was Julie Andrews in both Mary Poppins and The Sound of Music. It was divine! And get this...I would ask her questions about Dan and she would not get defensive! She would simply say she would look into it for me, or "I don't know." That really does suffice! You don't have to know the answer, just don't give me a stank attitude about it! 

I really hoped there was nothing serious going on with the old matron but I have to admit, I secretly wished she would not come back. Seth Godin, the marketing guru,  says it succinctly, "Be missed if you're gone."  I didn't miss the former matron at all. 

Although it was no surprise, I was kind of shocked to see the gloomy matron come off the bus a month later. My only consolation was that it was almost the end of the year and soon we would have a new summer school bus matron to contend with. I would just have to ride it out for a little while longer with this cheerless matron as I mourned the loss of Betty.  

This experience, however, taught me two powerful lessons.  The first; I need to value what I feel. Although I was happy for the mutual acuerdo (mutual agreement) between the bus driver and I, I need to  trust my instincts. If no one agrees with them, they are still enough. I should not need anyone to validate them. This is a constant lesson in my life. 

The second lesson is more a reminder to myself. How am I treating people? Am I living my life in such a way that people miss me when I'm gone?  How can I continuously be more like Betty? 

Maybe the challenge is in treating this matron with grace and compassion for the remainder of the school year regardless of how she behaves. Maybe she'll miss Dan and I when we're gone and she might just learn a lesson of her own. One can hope.  

Friday, February 19, 2016

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. 

Wednesday, February 3, 2016

Sometimes the Invitation is Everything!

Two weeks ago, I wrote a post, Special Needs Mothering and FOMO (fear of missing out). I posted it on my Facebook page  and prefaced it with this statement, " I wish I could go to all the events Iam invited to but as a special needs mom, I just can't, but please don't stop inviting me!"

It is my hope that people would understand the value of the invitation, how huge that is. Even if you think or know we can't go to your event, it means a lot to know that you still think of us, that we are not forgotten, and when we can't make it, that I/we are missed. 

In the past I have heard, "we didn't invite you because we know how hard it is for you to get babysitting" or "it was last minute, we knew you wouldn't come."  I don't want to hear that. Yes, if you really want me/us, to attend your event, please do try to invite us with enough time for us to attempt to find a babysitter. But even if it's last minute, reach out, we might be able to swing it, and if we can't, sometimes the invitation is everything!

Thursday, January 28, 2016

Happy New Year! Blog Goals for 2016

Quote from Austin Kleon's Book, Steal Like an Artist, chairs in front of Hugo McCloud's work Untitled, safety series orange, 2014 (currently on view at the Studio Museum in Harlem), Frida Kahlo apron made from recycled denim jeans

Happy New Year! I hope it's not too late to still say that. 

At the beginning of the year I took some much needed time to pray, get in tune with God, and seek direction for 2016. At the end of last year I felt a bit scattered and wanted clear direction so I could spend my time and energy wisely. I am so excited about this new year and want to share with you where God is leading me concerning this blog.

1)The Book

This year I am ready and focused to publish the book I have been writing for three years. It started out as a book about lessons I have learned mothering two kids on the spectrum and it has since mutated into other books which I will hopefully write, one after the other.

Early last year, as I was beginning to celebrate seven years of creative entrepreneurship, I felt God leading me to focus my book on this journey and tell my entrepreneurship story from my perspective as a special needs mom.  Here’s a small first-draft excerpt from the beginning of the book:

"Often, when you are writing a book, they tell you to write what you know but Austin Kleon says, 'write the book you want to read.' The book I'm writing is the book I wanted to read when I started my crafty business. I was a special needs mom on the brink of creative entrepreneurship and I had no role models. There are plenty of people, including moms, that start businesses, crafty or otherwise, all the time, but creating in a context of extreme care is different." 
- Nellie Escalante

I am so grateful for all those who have held me accountable and asked me how the book is going. This is why I decided to mention it here too. I need, and want, accountability. I plan to update you here as well as in my, now-revived, author page on Facebook: Author Nell Escalante. Come join me there if you like.

2) Refashion

Although less often, I will continue posting my refashion/wardrobe reconstruction projects here. I am committed to lessoning my carbon footprint around clothes and look forward to posting more about that this year.

3) Museum Practice

I would like to bring you into my museum practice a little more in 2016 as I have revived my work as a museum educator in the last year and a half.  This is exciting for me. After being home for seven years working on my business, it feels wonderful to have co-workers again. I didn’t realize how much I missed working on a team. I am looking forward to introducing you to artists and techniques I use during my museum talks and workshops.

4) Art Practice

I also want to show you some new techniques which I have learned in my own artistic practice as a fabric artesana. Screen printing, writing/painting on fabric, dyeing, resist techniques, these are all mark-making methods I have been reading and experimenting with and I would love to share my results.

5) Nelesc Designs

In my shop, I will focus on offering a variety of recycled denim aprons. I am looking forward to unveiling a collection soon and also offering some new t-shirt designs.

Well, that’s it! I hope you continue joining me here on this new journey in 2016.   

Friday, January 22, 2016

Special Needs Mothering and FOMO (Fear of Missing Out)

FOMO! I first heard that term/acronym from my older son who flippantly told me that one of his classmates "has major FOMO", she attends every singular school function. I had no idea what that meant and I curiously asked him, "what's that?" He said, "you don't know what that is mommy? It means Fear Of Missing Out, FOMO.”

Wow, there's a word for it! "That was me!” I thought. I felt relieved. I suddenly diagnosed myself as also having major FOMO! Is there a support group for this?

In retrospect, I don't know if I have FOMO or just want to regain my social life again. At the end of last year, some parents in my support group shared how rarely we, as special needs moms, go out. Of course, this is the story of my life so I chimed in. 

Before kids, I went out quite a bit especially to art/artists events. As a special needs parent, this doesn't happen very often, although I'm trying to rectify that. I guess this is common with any parent, not just special needs. But when one is mothering a "typical" child you expect this to be temporary, that, as the child grows older, you will have your freedom back or at least be able to take him/her with you. Not so with a special needs child. I will forever need to arrange babysitting for my son who requires constant supervision.

I don't have many options for free childcare; I have one sister who lives far away, another with many responsibilities of her own, and aging parents/in-laws who are not equipped to handle Dan's boundless energy.  

Then I have to grapple with my own guilt. "you want to spend money on babysitting to go to a gallery opening, or an art talk? How frivolous! You should be home with your kids! No one has really said this to me out loud but the self-talk is real. 

There are some outings that are no- brainers and if they happen during school hours, even better; school functions that are important for my education as a special needs parent, church every Sunday, and of course, work! These events, I am either required or make a concerted effort to attend.

But when I am deluged with countless invitations to gallery openings, book signings, poetry readings, art talks, kid's parties, church conferences, hanging with friends… I want to go to all of them and major FOMO kicks in!  I have to make a major decision as to whether it’s worth asking my very overworked husband to stay with the kids, whether it's worth paying a babysitter, or whether I will regret it if I decide to do neither and stay home. The last one has happened countless of times and I am determined to have that happen less this year. 

Here is my criteria for how I pick my outings. This is strictly my criteria and I look forward to hearing your criteria as well: 

1.    I go to outings that bring me into community

I belong to various communities and I choose events that will bring me closer to each of them. One community that means a lot to me is the Puerto Rican artist/artisan community so I try to be present for at least two of their major events; The Comite Noviembre Puerto Rican Artisan Fair in November and the Committee to Honor Puerto Rican Women on International Working Women's Day in March. These are blocked out on the calendar so everyone in the house is on notice; I’m going!

10th annual Comite Noviembre Puerto Rican Artisan Fair 2015
Community, in general, is important and necessary for everyone. As an artist, who often works in isolation, like myself, it is huge, so I plan and make sure my child is taken care of during these times.

2. I go to outings that will make an impact on my museum practice.

At a Museum Access Consortium workshop at the Museum of Modern Art 

Besides running a creative business, I am also a museum educator. I talk about art for a living and want to get better at it. When there are professional development conferences or workshops on museum education, I try to be there.

3. I go to outings that are beneficial for us as a family. 

These outings are the best because they don’t require babysitting! Two major events that we clear our schedule for are The Bronxchester Challenger Baseball League and last year’s 1st Annual Sensory-friendly Holiday Party, both hosted by D3 Sports & Recreation, Inc. The Bronxchester Challenger League is a program to help autistic children with sensory integration and social engagement through baseball. We love it! Our kids can be themselves, play ball, and we can grab something to eat afterwards. It’s great family time!

My youngest; after the  game
Anything with the word “sensory” in it has my attention so when we were invited to the 1st Annual Sensory-friendly Holiday Party, we knew we had to attend. Here, we came into contact again with former teammates from the baseball league and others from the autism community.
My youngest playing with rice during the 1st annual Holiday Sensory Party sponsored by D3 Sports & Recreation, Inc. 

These events also bring us into community, the autism community; we need this community in our lives! In general, if you create a space where our kids are welcomed, we will be there!

What are your communities? Where do you need to be seen? Who do you want to connect with, learn more from? Make sure you get to those events. Hire a sitter, ask a friend, plan in advance. Where there is a will, there is a way. This is key to keeping FOMO at bay. You are not really missing out on anything if you attend key events that are important to you. 

How do you organize your outings? I would love to know, Please post your comments below. 

If you would like to donate to the Bronx Parents Autism Support Circle, go to www.bxpasc.org

If you would like to donate to D3 Sports & Recreation, Inc., please click here