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We Are Brave Together

A SUPPORTIVE COMMUNITY FOR MOMS OF CHILDREN WITH DISABILITIES AND ALL UNIQUE NEEDS

Dear Younger Me,

In honor of Mother’s Day, I share my heart and soul with you.

If I could go back in time and share with you, Younger Me, what I know now, this is what I would say.

I know you think that your family story is too unique, too different, with so many half and step siblings, interfaith stories, divorces and such. However, one day you will appreciate each person and each relationship. In some way each person and parent contributed to your resilience and strength.

I know you dreamt of creating and having “the perfect family” and yet, you will quickly learn there is NO such thing as a perfect family. You will see the beauty in imperfections and in the adjustment of expectations and dreams. You will find freedom in this.

When motherhood began, you were anxious, trying so hard to do everything right. (Whatever that means!) You tried to follow the latest parenting trends and books. I would tell you, throw out the books and friends’ advice and habits, to just listen to your intuition. That you have wisdom inside of you that you can access as you raise your kids. And of course, if you feel stuck, frustrated, bewildered or need mentoring, grab an older mom friend or enlist the help of a parenting coach or therapist.

I would tell you that the best thing you did after Ryan was born was join a support group. You were so scared and wide-eyed with Ryan’s diagnosis. And yet immediately, you found your tribe and mentors. You felt empowered and strengthened by this. You knew you were NOT alone. Bravo, because the journey is long. The days are long. The nights are long. You will need connection and community…forever. For it will sustain you.

Your children will teach you the GREATEST LIFE LESSONS. In patience. In compassion. In joy. In perseverance and endurance. In the importance of therapy and doing all the inner healing work. Your children will simultaneously break your heart and fill it up beautifully, in a way only they can. And yet, even though it is exhausting and exasperating at times, you will never regret becoming a mother.

There is no such thing as a perfect mother and the word “should” is a nasty word. Never say it or think it. Give yourself lots of compassion and grace. Again and again. Talk nicely to yourself as you would your best friends.

Good for you for always asking for help, finding help, and…for taking mommy breaks, girls’ trips and date nights away with your hubby. Keep doing that. It has preserved your energy, outlook and life-giving relationships. Always encourage others to do the same.

Dear Younger Me, there is so much more I could say. I will write to you again next year. Thank you for being with me all the way.

Now…Moms of WABT, what would you write to your younger selves???

HAPPY MOTHER’S DAY!!!

 

MAY’S BRAVE MOM

My name is Angie Rose Robinson.

My son is Giancarlo Valdez, he is 20 years old. He was diagnosed Septo-Optic nerve Hypoplasia. (Blind) Diabetes insípidus(Water Diabetes) as well as many Intellectual disabilities. At the age of 4 he was diagnosed with Autism.

My favorite song is: Rise Up

My Favorite food is: Italian (Pizza to be exact.)

My favorite quote is:
“The only thing worse than being blind is having sight but no vision.”
-Helen Keller-

What I would say to a Mom grappling with a new diagnosis is: “Hang in there Mama! I promise it gets better.”
I promise you and your child, will come out victorious and stronger.
I would also say: “You are about to find out how powerful and strong you are.” Let you child be your teacher, and always, always be the best advocate for you child.

PARENTING TIP

Allowing Joy

One of the things that I noticed years ago, when my now eighteen year old autistic son was seven, was how normal it was for me to feel the emotions of fear, sadness, anger, and guilt and how I was not at all comfortable with allowing myself to feel joy. I got curious about why this was and I realized that it was part of myself, the warrior archetype, that had sweet but misguided intentions of trying to protect me from all of the unexpecteds that popped up as a parent.

How was it protecting me? If I only felt those other feelings, I was doing something. I was putting energy into preparing myself so I wouldn’t be caught off guard by whatever ball was going to drop next.

While that part of myself had its own intention, when I began to explore what my intention was as a parent, it was definitely not to have him see a mother who was always worried, sad, angry or mentally beating herself up. It is totally normal to feel those things at times but I also really wanted him to see someone who felt joy. I wanted him to hear laughter. I wanted him to see an adult, who for the majority of the time, was happy and content with the life she was living.

It also occurred to me that if I wanted him to be happy, a common intention for parents, I needed to be a role model for what that looks like. Once I realized that, I knew in that moment, moving forward, things had to change.

Since I had been disconnected from joy for many years, it was super uncomfortable, especially since my warrior did all it could to keep me safe from the dangers of joy - “No! Don’t do it!! It’s selfish! We are going to get hurt!” (So fascinating, isn’t it?!) I reassured that part of myself that we would be okay and set out to get to know what brought me joy anyways.

I started small by paying attention to each of my senses. (I love starting with senses because they are with us all of the time so it’s not like we are going to forget them at home - ha!)

  • What colors or patterns was I drawn to?

  • What were MY favorite meals and beverages?

  • What scents did I enjoy, even in small doses in my bathroom because of my sensory sensitive child?

  • What kinds of music and shows did I want to listen to or watch?

  • What clothing felt like me?

Like I said, it was awkward and at first there was a lot of toggling between thoughts of choosing things that I thought my son or my husband would like and override those to give myself permission to do something as basic as getting the plaid tissue box because it made me so happy to look at or listen to music that energized me while I cleaned the kitchen.

The more I allowed myself to experience joy in these small doses, the more I began to notice all around me, like how much I loved watching my son swing on a swing with his shoes kicked off and a huge smile on his face without a care in the world. I was allowing joy and it turned out that doing so not only helped me to feel happier, I was able to cycle through the challenging times faster with more curiosity.

My brain was changing for the better and not just tasked with being on the lookout for the next ball to drop. Balls were/are going to drop! That is part of life regardless of how much I perseverate on things so I might as well allow bits of joy or at least contentment in the meantime.

My intention of wanting my child to see a happy mother was not only NOT selfish, I began to see just how incredibly important it was for me to be that role model of what it means and looks like to be an adult, a woman, a mother, a wife, a sister, a daughter, a friend, a person, etc. who can experience all emotions in a healthy manner.

One morning I saw something that made me laugh out loud and my son stopped what he was doing, came over, put his little hands on my cheeks and with a sweet smile, said, “Mama’s happy!” Yes. Yes she is.

Margaret Webb
margaretwebblifecoach.com

UPCOMING SUPPORT GROUPS

All Member Support Group with Laurie Magulac *VIRTUAL*
Morning session: 5/24/22 | 11:00 AM PDT RSVP
Evening session: 5/24/22 | 7:00 PM PDT RSVP

San Diego Support Group *IN PERSON*
5/28/22 | 4:00 PM PDT RSVP

My Child’s Mental Health & Me *VIRTUAL*
6/1/22 | 12:00 PM CDT RSVP

Los Angeles Support Group *IN PERSON*
6/5/22 | 10:30 AM PDT RSVP

Boss Ladies Raising Kids with Special Needs *VIRTUAL*
6/14/22 | 11:00 AM MST-Phoenix RSVP

*NEW!* Moms of Clubfoot Cuties Support Group *VIRTUAL*
6/16/22 | 6:00 PM MDT RSVP

South Bay Support Group *IN PERSON*
7/15/22 | 7:00 PM PDT RSVP

UPCOMING VIRTUAL RESOURCE GROUPS

Financial Planning for the Special Needs Family
Saturdays, 4/16 at 10:00 AM; 6/18, 9/17, 12/17 at 2:00 PM PDT RSVP

Move With Megan
Every Tuesday 3/1 - 5/31 | 9:00 AM PDT RSVP

IEP Collaboration and Communication Strategies
3/15, 5/17, 9/13, 12/6 | 12:00 - 1:00 PM PDT RSVP

*NEW!* Sex Education for Parents and Caregivers
9/15 & 9/22 | 11:00 AM PDT/1:00 PM CDT RSVP

 

FACEBOOK GROUP

How to get into the Secret Facebook Group for WABT:

1. Find Jessica Patay on Facebook
2. “Friend” her
3. Message her a reminder that you would like to be in the secret FB group
4. Jessica Patay will add you in
5. The FB group is a great place to ask questions, vent, share, seek resources and feel supported and CONNECTED to our sisterhood.

Each year in honor of Mother’s Day we raise funds for our retreats and scholarships!

AND…we have a matching donor AGAIN!

If you would like to donate, here is the link:

 DONATE 

Are you enjoying the recap emails every other Friday?

Just a little reminder about what we are offering to you on the Brave Together Podcast!

Feel free to send in requests or submit your story today: jpatay@wearebravetogether.org

 

HELLO SLEUTH

Sleuth is a parent-built database on children's health. We collect caregiver expertise about their child's health journeys and turn it into insights about specialists, local resources, and diagnostic pathways for parents of similar children. Started by a special needs mom, Sehreen Noor Ali and a data scientist, Alex Leeds, Sleuth aims to elevate the caregiver and help parents get faster, data-driven insights about their child's unique health. We've launched a data project here and invite you to contribute your expertise.

We are also looking to do a few Instagram Lives on HelloSleuth with parents who'd like to share advice with parents of similar children (such as: what you wish you knew sooner and what types of resources/people most helped you). If you're interested, please DM us at @HelloSleuth on IG or email me at Sehreen@hellosleuth.com.

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RESOURCE CORNER

Other Parents Like Me was founded to address the worldwide crisis of teenage substance use and mental health issues by creating an empowered online community of parents supporting parents with help, hope, and healing.

From therapist and Podcast Guest, Rose Reif comes a few very helpful blog posts:
Four Things That Shouldn’t Determine Your Worth as a Special Needs Parent
Three Sneaky Things that Keep Special Needs Parents from Getting Enough Sleep

I think this explains how we get stuck in overwhelm (with Kara Ryska):
The Special Needs Mom Podcast: Trade in Those Fears for the New Possibilities

When you want to numb out (with Madeline Cheney):
The Rare Life: Numbing Out When Things are Tough with Anna Smyth MS, RYT

On Burnouot:
BURNOUT: Do You Feel Half Alive?

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wearebravetogether.org

We Are Brave Together, P.O. Box 3002, Palos Verdes Peninsula, CA 90274, United States

A Non-Profit Organization

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