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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Have the Conversation with the Right Person

CONVO WITH THE RIGHT PERSON

There have been times when, in my moments of darkness, I have shared my raw, honest feelings about mothering special needs children and they have come back to bite me in the ass. I had the conversation with the wrong person.

The person in question manifests that they are indeed the wrong person when he/she responds with a blank stare, waves away your feelings and tells you not to feel that way, or blatantly judges you. Unfortunately, sometimes the wrong person is rather close to you; your significant other, your mom, and yes, other special needs parents. That is probably why you chose them, because they were literally close by and you needed to talk to someone, anyone.

You have to find people that can handle your honesty. I remember being in church and people telling me; “wow, you are so patient, so good with your kids”, “you’re a saint.” If they only knew how I sometimes felt inside, that I sometimes questioned my decision to have children, that I sometimes felt I caved into pressure to have a second child when I was totally content with one, that I often wondered if I should have had children at all.

I have wondered what my life would have been like without kids, or without Dan. These are real, raw, honest feelings that need to be voiced. When you have these feelings, you are in the moment. Your feelings aren’t you, you are reacting to a situation and you say the weirdest things. You need people around you that can ride you through these moments and see you to the other side.

I thank God for my sisters. We are at a point in our lives where I can tell them anything and know that I will get nothing but love in return.

But if you don’t have biological sisters you can talk to, there are sisters out there that can handle your honesty. I promise you! Keep looking until you find them.

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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?

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I Caught a Glimpse…

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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.

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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.

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*Vintage post from 2015

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

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

 

No Place to Hide is the Only Place to Be

NO PLACE TO HIDE

This goes along with my previous post about not “running away from the runway.”

I’ve said this before, you all know that 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. A simple excursion to CVS has to be planned. If I’m not centered and prayed up I can go gangsta on you If anyone says something stupid.

Okay maybe not “gangsta” but you will hear my mouth, if I don’t walk away crying first.

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.

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.

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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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