Mom, What Happens When You Are Gone?

My daughter Isla is 11 years old and has a unique subset of autism that has broken me and put me back together in ways I never could have dreamed.

You always assume you will have so much to teach your children and then God giggles a little bit and sends you your greatest teacher in the form of a 7lb 14oz bundle of curls who will eventually be diagnosed with something that is forever.

Interestingly enough I have recently been reflecting on the lessons that motherhood has taught me but not the lessons from Isla, the lessons from June.

June is 7 years old and does not have autism.

She is what society would call “neurotypical” and the way she processes the world as she grows is equally terrifying and refreshing.

While Isla is carefree, oblivious to most of the world’s cruelty, and is uninhibited in almost every way, June worries.

June cries easily when embarrassed or mad or happy or sad or worried. She has a real, debilitating fear of getting lost or being left behind. She constantly needs to know where I am.

She worries about being picked up on time, EVERYDAY.

She worries about strange things like people vomiting randomly and her not being prepared. She worries about Isla and cries when Isla cries. 

After a few too many “tummy pains” this summer, she was diagnosed with the beginnings of an ulcer. 

So now I was staring down anxiety that had moved on from emotional peek-a-boo and presented itself in a very physical way.

In the past this would trip me up every time.  When something was going on with me or June or even my husband, it was so easy to blame autism for all of it.

We are stressed because of autism. We are sad because of autism.

June is nervous and wants to please because subconsciously she remembers me crying and being sad and frustrated because of autism.

June is a worrier because she has learned this from all of us worrying for Isla who has autism.

As a momma, we do this a lot. The blame game is such a real thing.

But you see, June is growing up in probably one of the most joyful and peaceful households a child could have, especially in the last 2 years.

Our days are filled with music and impromptu dance parties and tie-dye crafts.

We spend a lot of kitchen time together learning to bake and cook and we have gymnastics and book reading at night and singing.

So, no.  I have learned not to blame autism or our past emotional rollercoasters or anything else for June’s anxiety.

June is June because June is June. She is smart and learning too fast to keep up with this crazy world. 

She worries and stresses because she, unlike Isla, understands now that there is bad in the world. 

That is normal. That is part of growing up.

For me to help June grow through her anxiety is not to blame autism.

It is not helpful or even correct to blame myself.

This is not about me.

It is about June as a human being that is her own person with her own ideas and fears and opinions about life. 

That is something to celebrate not blame me for.

In regards to being equal and fair, how do we balance time and attention with each child when one requires so much more?

How do we make sure discipline and reward are fair when one child is so obviously different?

June has taught me that equal and fair does not necessarily mean “the same”.

Approaching June as an individual with unique needs and with specific requirements for her to feel loved and valued is so crucial to our relationship.

I don’t concentrate on making our life FAIR for all of my kids. 

I focus on making them each feel valued and important and worthy of my love no matter what. 

That will look different for each kiddo and that is OK too.

It took 7 years, but the conversation that I knew would come, came.

I was laying with June one night after reading “She Persisted” by Chelsea Clinton which led us to a chat about college.

I was on my momma dream-train and looking in this little girl’s eyes telling her whatever she wanted to do or be or become, whatever she wanted to study, however, she wanted to live and spend her life, I would help her make that happen.

She asked me if I would be sad when she left for college.

I lied.

I said, “Girl! No way! College is so fun and I am so excited for you to experience the world in the only way your eyes can see it.”

You see, Greg and I have already decided to park an airstream at the nearest trailer park to whatever college she chooses so technically…I was not lying. 

I won’t be sad because I will be there, secretly. I digress.

Then I told her that her daddy, Isla, and I would never be too far away and would visit her and her little brother in college whenever they wanted.

June caught on too quick and asked, “Wait. So Isla is not going to go to college?”

“Um, I don’t think so babe.” I said with a smile.

“Why?” June asked.

I explained that Isla was going to Jr. High next year and still cannot read or write and does not know her numbers or colors or shapes or letters and all of that is really important for college.

“So she is going to just stay with you forever?” she asked.

“Yup! Oh and man we are going to have fun traveling to see you and Major and bother you all the time!” I laughed.

“Wait. Mom. So what happens to Isla when you die?”

Soul. Crushed.

I scrambled to pick up my heart and with all the guts I had, I told June, “You know babe, I don’t know.  I do know that God is getting someone ready to take care of Isla when I am gone and I pray for that person every single day.”

“Mom, is that person me?”

“I don’t know June.  It can be. It doesn’t have to be.” 

As Isla’s sister, you don’t have to take care of Isla for her whole life unless that is in your heart to do when you get older.  But if it isn’t, that is totally fine too and really I just want you and Major to always make the best choices and decisions for her together.  You will be the only ones left that love Isla the most in this world so, I trust you.”

June was already teary eyed as she said, “OK. I can do that.”

She yawned and closed her eyes.  I walked to the door and she quietly said, “Mom, maybe Major and I can share her.”

Yeah.  Maybe.

Written by, Dr. Lisa Peña

Dr. Lisa Peña is a Today Show Parenting Team contributor and the founder and president of the non profit The M.o.C.h.A.(TM) Tribe which stands for (M)oms (o)f (C)hildren that (h)ave (A)utism.  She is the author behind The M.o.C.h.A. Tribe Diaries which is a website/blog devoted to squashing the idea that autism has a single story and author of a newly published book, “Waiting for the Light Bulb” available on Amazon. Dr. Peña is also the director of an annual wellness retreat for mother’s with special needs children called The Ultimate M.o.C.h.A. Session. She is a rookie author but a professional mother of a child with an incredibly unique subset of autism called, pathological demand avoidance (PDA). Dr. Peña is a proud coach’s wife, a clinical pharmacist, passionate public speaker and a busy mom of three who happily resides in South Padre Island, TX. You can follow her story on her website and on Facebook.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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