Creative Special Needs Super Mom Spotlight #4

Welcome to Creative Special Needs Super Mom Spotlight where I interview women in the arts caring for special needs children. 

Let me introduce you to Liela Joy Marie Fuller; writer, author, poet, and mom to Malachi. I met Liela through an online writing group. When her book, Life's Reflection came out, I knew I wanted to support her and her work. It was one of the best things I bought with $10! The poems in her book are so raw, real and well... reflective! My favorite poems in this book are Love Soup, Distant Friend and of course, Malachi.  

One of the things that stood out for me in this interview was  Leila's perspective that mothering a special needs child is "part of your story." Early in my own journey with special needs mothering, when it got super tough, I would think that this was all a bad re-write to my true story, not so! As I accepted this part of my life's tale I began to see possibilities.  

Now on to the interview! 

• What is your child’s diagnosis and how does it affect him? How does it affect you?

  My son has Charcot Marie Tooth Muscular Dystrophy and he was diagnosed at 5 years old. It generally affects some of his motor skills. He has had, at times, problems with walking, writing, and running. To see Malachi, you would not know he has a problem but if you ask him to run with kids his age you might see that he is a little slower. Having lived with the disease since he was 5 and now being 14, he is very conscious of the disease and its affects and he rarely allows it to get to him. In fact, he refuses to be treated any differently because of it even when I feel like maybe he should be allowed. At school, he refuses to use the elevator or request special time when taking a test because he does not want to be seen as different. It is an uphill battle because he sometimes needs the extra time but I completely understand his viewpoint. As a Mom his disease affects me in that I worry more and I definitely pray more. It is so hard battling with him about whether or not he needs more time for tests or needs special equipment because he just wants to be normal and I just want to make sure he is afforded every opportunity to succeed. I have had to learn to choose my battles with him. If he does not want to take the elevator I won’t force him but I will insist on extra time for tests/quizzes especially standardized tests and he is OK with that. We try to make the best of each day and most days we don’t think about CMT – we just live our lives the best way we can – together.

  Tell us a little bit about your child

  Malachi is a typical 14 year old boy. He loves video games, reading, TV, and he hates homework. In fact, homework is a constant battle in our house so if anyone has the magic potion to making teenage boys want to do homework I am willing to listen! He is very much like me in that he is quiet initially but once he gets to know you, he will open up.

  
  Describe your creative journey pre-kids to post kids. How have you been transformed? 
  Before I had my son, writing was not really something I thought much of. In fact, I have been a writer since I was 5. I wrote stories, I wrote plays, songs, poems, op-ed pieces, etc. I just thought it was how I expressed myself best. Once I had my son, I continued to write but when he was young not as frequently. When my son was diagnosed with CMT Muscular Dystrophy, I began to journal and blog about my experiences because I could not find any support for my situation. As he got older, I continued my journaling but discontinued the blog after finding a site dedicated to children and adults with CMT. So writing has essentially always been a part of my life, it just takes on various forms and meanings at different times in my life.

  Specifically, what kind of writing do you do? 
  I write various things but my main genres now are Poetry and Fiction. My first book, Life’s Reflection, is a poetry book. Life’s Reflection takes my readers on a poetic journey through various times in my life through my poems. You will find poems about love, poems about my family, poems about loss, grief and pain. It is truly a reflection of my life thus far. And while not every poem is reality for me personally; every poem has a truth to it. Every poem is the story of someone.

  What is your schedule like? How and when do you find the time to work?
  

  BUSY!! Can I say that five more times? I work a full-time day job and I am also very active in my church community so finding time to write is sometimes a job in and of itself! I tend to make sure that Saturdays are dedicated almost exclusively to writing. That does not mean that I don’t do other things but it does mean that I take special time to get a majority of my writing done for the week that day.

  What is your process? Do you craft full time or do you have another job?
  

  I am not sure that I have a special process. I just write and allow the characters or the story to speak to me. I don’t force it – if the characters are not speaking then I move on to research or development or even walk away. Sometimes just letting it sit for a while and coming back to the story provides the jolt I need to get back into it. I do have another job.

  Besides writing, what else do you do to relax, unwind, cope? Can you mention a particular stressful incident with your child that gave you the opportunity to employ said coping strategies?
  

  I love music; it helps me unwind but mostly prayer and my relationship with God. That is what gives me strength. Last year about this time, Malachi fell on a waxy part of his schools floor and broke his ankle. He was too weak to use the crutches but we had no choice at the time. A two minute walk from our car to our 2nd floor apartment was an hour long ordeal with lots of tears for both of us. He ended up having to sit on the stairs and pull himself up because there was no elevator in our building. I ended up having to pay for a wheelchair because my insurance would not cover the cost of it. That was the longest 6 weeks of both of our lives. He ended up having to be home schooled and some of his teachers were not very cooperative. It was a nightmare but thankfully my Mother and Father stepped in with finances and time so that I could go to work and Malachi would have someone to be with him at home.

  What tip(s) would you give moms caring for special needs children? What have you learned?
  

  Patience…Patience…and More Patience! Having a special needs child is not easy and people often think you are super woman while you are feeling like a failure. You have to have patience with yourself and with your child. It’s the only way you will be able to breathe. Life is not always easy but you can make it through. I have learned that with prayer – lots of prayer, tears and patience I can make it. It will be hard sometimes and yes, you will wonder why God gave you this test and trial but God will never give you anything you cannot bear. You were meant for this – this is a part of your story and your child’s story. And one day you will be able to share your wisdom with someone else who is going through the same thing. Stay Strong Mother!

  Do you have a blog? Facebook, twitter, where can people follow you?
  

  I no longer have a blog but I am on Facebook and Twitter

  Facebook.com/authorljmarie

  Twitter: @authorljmarie

  And you can also check out my website –jadoraschild.wix.com/authorlielamfuller. You can sign up on my website for my mailing list. You can also purchase my book, Life’s Reflection.

  
  

  Author and Poet Liela-Joy Marie Fuller

  
  

  Liela-Joy Marie Fuller has been writing since the age of 6. She is currently seeking publishers for her first Poetic offering entitled "Life's Reflection". She is also working on her first novel.
  

  Page: 50 like this

Please show your love for Liela in the comments. Thank you!

Jumpsuit from Recycled Boy Jeans

As promised in my previous post, here's my denim jumpsuit made from recycled boy pants. 

I 

I used about four boy pants, sized 12-14, for this entire jumpsuit. 

The pattern was self drafted using this inspiration photo.

Front panel from a pant leg. I cut two of these.

Back from another pant leg.

For the waistband, I used recycled jersey from a t-shirt and I made the pant legs using one of my low-waisted pants as a pattern. I am happy with the outcome although I think I might make it a little shorter. 

I will definitely wear this in the neighborhood to run errands, at the playground with the boys, even the beach. It would look good with a swimsuit underneath. 

I look at each and every comment and appreciate your feedback! 

Tutorial Tuesday: Super Easy Denim Shoulders

As I mentioned in my previous post, I have been fabric stash busting. One of the bins I started to look through was my denim stash bin. 

I have soooooo much denim! From scraps to full pants handed down from my husband, my son, our cousin who hands them down to our son, etc. Believe you me,  am not complaining because I LOVE denim, but alas, I needed to start making some stuff with it. 

First up, denim shoulder pads. I love a strong shoulder, especially since I don't have them. Mine slope down so I love pads, puff sleeves, anything that will accentuate them. 

Here's a super easy tutorial that will do just that. 

I used an actual shoulder pad I took out from a dress as my pattern. I laid it down on two pieces of denim scraps, right sides facing each other. You need to do this twice.

I sewed around the edges starting in the middle of the semi circle and leaving an opening so you can turn it later. 

Turn and topstitch

That's it. I sewed them on a tank top aligning the edge of the denim pad to the edge of the tank top strap. 

 It does add some interest to a regular black tank.  

Don't you think? 

Stay tuned for my next post where I show you my jumpsuit made from boys pants!

PRIDA (Puerto Rican Institute for the Development of the Arts)

Wow! It's been so long since I last posted. I am so sorry! I have been super busy with craft fairs, t-shirt orders and fabric stash busting. I will have a lot to show you soon.

I am part of a Puerto Rican artisan group called PRIDA (Puerto Rican Institute for the Development of the Arts). Our mission is to promote and provide support for the Puerto Rican arts and the artists that create it. We sell our crafts together in various parts of the city and beyond. I am so honored to be part of a community with such artistic, fun and intelligent people.  I definitely will dedicate posts to highlight the work of some of these incredible individuals.  

For now, here are some pic of my recent craft fairs where I sold my t-shirts and cuffs.

photo by Olga Ayala

April 26, Betances Community  Center for the Muevete Conference. It was such a nice and sunny day.

photo by Olga Ayala

Photo by Olga Ayala
On May 17,  I was at the Bronx Museum. It was quiet, but I got a chance to interact with my other PRIDA members

photo by Olga Ayala 
Eris Garriga is the author of various Puerto Rican cookbooks which have won awards. I have to get me one of these soon because, unfortunately, that is one of two things this Puerto Rican girl does not do well; cook and dance salsa! 

photo by Olga Ayala
Daniel Del Valle makes these wonderful masks from paper mache. He is also a graphic artist and children's book illustrator.

photo by Olga Ayala

On May 31, I was back at the Bronx Museum, it was so much fun that day.

photo by Olga Ayala

Here is Olga Ayala who is a Jill of all trades. She works with polymer clay, recycled materials, and crochets. I will definitely dedicate an entire post to this creative lady. 

I really love doing these fairs. It gives me a chance to participate in a vibrant, cultural artistic community and, more importantly,  it also gives me a break from the kids! lol.  

Stay tuned to more PRIDA events news.  

Sew and Tell: Color Block Draped Dress

Okay so I kept one of two promises from last week's color block draped dress post. I said I was going to iron the dress and show you pics of me wearing it. Well, here I am wearing it but it is not ironed! Sorry. I just had so much to do and I rather let you see it on me as quickly as possible. 

Doesn't it look better on a person than on the dress form? I certainly fill it out a lot more. I bought my mannequin before I had kids so I got bigger and my mannequin stayed the same, oh dear. 

Side view

Here is is without the belt. I really love it. 

Just to recap, this dress was designed on the dress form from fabric I sewed together. I love this organic way of designing. You can do it too, it's easy!

I still have to work on the neckline and perhaps will shorten it a bit but I can definitely see myself wearing this dress with sandals around my Bronx town in the summer time. 

Te gusta? (do you like?). I read each and every comment so feel free to post and let me know what you think. 

Easy Color Block Draped Dress

By now you probably know that I am a big fan of color blocking and draping. This and last week, I have been doing some fabric stash busting. It's the reason why I haven't posted in a while. This project is perfect for getting rid of those fabric scraps. 

I started with this: a red t -shirt with a print that never sold in  the shop, a piece of blue jersey material from when I was selling draped dresses, and a piece of brown jersey fabric from a color block project two years ago. 

I opened one side of the t-shirt and simply serged the pieces all together. You can also sew them, you don't necessarily need a serger. 

I then draped my color blocked fabric on the dress form. I cut here and there, sewed here and there, and this is the result: a color blocked draped dress.  

Another view. I love this organic way of designing. No pattern pieces, no predetermined place where each color will go. Just simply seeing where the fabric falls best. 

The back view

I apologize for the wrinkly fabric, it definitely looks much better on a person. I promise to iron it and take pictures of me wearing it soon. 

Has anyone else ever worked this way? Just draping on the dress form?

Sew and Tell: Peplum Top T-Shirt Reconstruction

I have officially joined the peplum trend fashion craze with this new t-shirt reconstruction. 

It all started with these two t shirts. Every year, our wonderful aunt gives us a membership to the Bronx Zoo (and all the other outdoor parks connected to the membership). The membership comes with a free t shirt, well two, one for each boy. Each one is always the same size, medium, they usually do not have anything smaller than that. So, of course, my older one takes one and I take the other. I figure Dan will eventually grow into the older one's shirt. 

I had the green shirt for a while and worked well for contrast.

A medium lends itself well to this kind of peplum, princess seam reconstruction because the idea is to make it smaller. Since I am usually a small, this gives me enough room for seam allowance.

 Princess seams give such a nice contour and a peplum is perfect to accentuate the waist. Worn, with skinny jeans, it looks great!

 "Is that a polar bear I see over there?"lol. Practicing my ooh aahh stance for when I go to the zoo.

Can't wait to sport this shirt this summer when we go to the zoo. My hubby usually takes my older son to the Bronx Zoo, but with little Dan, the Central Park Zoo is better because it's smaller. I can see the entire zoo in one visit and feel very accomplished!

As always, I'm curious, what do you think?