Remember Who You Were On This Special-Needs Motherhood Journey

REMEMBER WHO YOU WERE

I am currently working on a book on self-care, a series of lessons I have learned (and continue to learn) on my special-needs motherhood journey. I’ll be offering some of them here, on this blog. Feel free to let me know your thoughts here, or on my Facebook/Instagram pages.   Here’s the first one…

Remember Who you Were

Any type of motherhood, special needs or typical, causes women to feel like they’re losing themselves. It’s the perennial question of balance that women face between identity (work) and family. The constant work of caring, and ultimately being responsible for another human being, leads us to question, and then adjust our identity to this new life. This takes on a whole different meaning when you have special needs children. The care can be daunting. I feel like I am still adjusting, my GPS constantly on recalculating … I once wondered if I even wanted children at all and what I got was children that required more care than I would ever imagine.

What helped me in daunting and overwhelming moments was to remember who I was. My circumstances had changed drastically but I was still me at the core and I needed to reaffirm that. In the midst of such drastic change, I needed consistency.

I went to things that reminded me of myself, pre-kids. I got out my old cassettes of Sting, my all time favorite musician, and started listening again. I also started reading his autobiography and it really helped me to reconnect with Nellie pre-kids. It also reminded me of the time I went to see him in concert with my friend Maxine back in the 90s.

After my oldest was diagnosed, I went back to museum work. I needed a semblance of normal life again. I was coming to terms with the diagnosis and needed to tap into the part of me that was untouched by it. My life before the diagnosis… museum work. Other opportunities that fed into the pre-kids Nellie also began to surge. I taught a class on Puerto Rican art and lectured on Latin American art in various libraries in the New York Public Library system. All of this helped me reconnect with what I still continue to love: art and art history. I felt like my old self again and this fed my soul and helped me be a better mother to my oldest.

After Dan was diagnosed, I went further back and started screen printing and sewing again, passions from high school and college. I even opened my own shop online and started selling my screen-printed and reconstructed clothing. This further solidified my identity and in turn helped me be a better, more at peace, happy mom. I was drawing from my past and taking inventory of the things that made me really happy.

In the midst of the loss I was feeling, this reconnection to my old self, offered me joy.

What can you tap into from your “old self”, your “pre-kids self”, that can positively ignite you as you live in your present circumstances?

my signature2

Advertisements

How Mark Rothko Made it all Better at the Psychologist’s Office

Rothko and Dan

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.

 

my signature2

On Having Nice Things When you Have a Special Needs Child

on having nice things

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.

my signature2

*This is a vintage post from 2016