January 12th, 2020

Letters to my friends 1/2020

Dear friends,

Last week I shared my letter to my daughter Sarina with you about the “one wish” I had for my Birthday. Thank you for celebrating me and for cheering me on. 

If you missed the letter, read it here, so you understand what this is all about:

http://bit.ly/30dbWTM

 

Did I go dancing?

 

YES, that is a big fat yes, I did! I danced my heart out, as I shared in the letter. All my pain poured out of my eyes until I felt my smile catch fire from the big family of butterflies going wild. It was bliss!

That’s what choosing us does. It was a real get-my-hands-off-the steering-wheel-moment I gifted myself by making a wise choice: Put me first on my day. 

In my position, that’s not an easy one to do. Special Needs Moms are never free.

I’m thrilled to realize, I’m a rebel with a causeand that cause was to honor me!

Dear friends, I have learned sanity, joy, and love for ourselves is up to us. Whatever destiny delivers, we need to make it work. It’s an inside job.

My cradle did not produce self-love. I created it; think of my 🌴Tiny Islands; they are my heroes and fill me up to stay true to my message: I’ll not give up.

 

Was Sarina able to manage?

 

That’s 90% yes. And the beasty 10% missing is what brands me a special needs mom. 

These puny missing 10 % bring my family much grieve and toxic stress; they put the chains around my ankles, my husband into depression, and keep Sarina from living on her own.

While it’s never a question if she can do something because Sarina can do almost anything; it’s always a lottery as we wonder: will she remember? 

 

What happened yesterday?

 

My friends, Sarina was ready on time, called her Lyft ride, but then got stuck in her bubble reading the paper. In her bubble, she disappears into her off-world. Her dad noticed, he secretly stood by and lured her into the present moment 🙏🏼. She listened, and off she went. 

NOTE: To describe what’s off or on in Sarina’s life is part of my book. My challenge is to show both sides so the world she lives in can embrace her wholly. But for now, back to my letter.

90 %. That’s a win. Not bad, right?

Think twice. Someone needs to be 10 % for every step along the way. To hold space for all the little things in life she can forget. Or better keep an eye on her in case she does! She needs loving, invisible arms that care and understand the gift she is to the world — kind of my double 😇 without the emotions of our umbilical cord.

You know, this is what Autism Spectrum delivers: A brain that functions differently but not less.

Add six months in the incubator. Bombarded with deafening noise levels equal to an air jet flying by, and you might understand why Sarina dives into her bubble. 

To disappear is not her choice; it’s a coping mechanism she needed to survive the chaos a micro-preemie has to endure. 

I’m sharing with you one of the challenges we have because you asked me about timers. Yes, Sarina uses timers.

Brace yourself. Three with visual and auditory alarms strategically placed! A big one in the shower – we know everything about the hour-long loss under hot water 🙃 — one by her sink to not miss breakfast, one at the breakfast table to not forget to leave. Puh! Huh!

Does she remember to use them? Can you guess?

Add the timer on her phone to organize her free time, and she should be on. 

Cross out the word should. 

 

Typing this, it all sounds like too much.

It is.

 

It describes our life with on the spectrum: Above average intelligence meets poor executive functioning and not grasping the big picture.

You know that about me,  I’m turning into Einstein when I’m desperate to have my girl succeed. I top the timer scene with the most annoying one I know — the beast is part of our oven. I calculate when her timers should go off, like after breakfast and let this monster ring when I see her off. Genius, right?

I know this is mind-blowing if you don’t walk in my shoes. I know you love me, that’s why you’re still reading. Thank you! Don’t forget to breathe now; In and out. Always pause – relax – breathe – repeat!

And you know what happens when the magic is on and we taste a slice of normal? I don’t know how this happens, but one day out of five, we have a win, and Sarina is on. She shows up on time 🎊and my trust muscle leaps. 

The other days are on me. I am holding space, trying not to intrude, or lose my mind by doing something meaningful other than hope and wait and get frustrated. My 🌴Tiny Islands come handy. 

And I’m a cook. I am devoted to food that’ fresh from the earth. I cut my veggies while I hope for a miracle. There are days I own my crown, and there are days it slips. 👑

How can she not hear the timers ringing right next to her ears?

Sarina’s auditory sensitivity lets her shrink when unexpected noise hits her. A truck blowing its horn is a nightmare for her. But then the astonishing thing happens; she tunes out the most annoying timer while our brains fry. She is not bothered because she is off while she reads the paper. 

 

Withdrawing into her bubble is an incubator’s survival behavior.

 

If you are curious, we have worked with the Tomatis© method to strengthen her listening skills. Fantastic! But she’d need more, and it is bitterly expensive.

And last, remember we talked about letting her fail and feel consequences. 

I grew up and strong with them, but I was a neurotypical child. Sarina is not.

Do you know who pays the consequences? The most painful price when she misses her day? Me.

And Fridays are extra important. She attends a fantastic one of its kind social skill class. We waited six months for Sarina to get in, and the waiting list is long. No way I will let her loose this chance. Here she must come first, and I’m steering strong.

Plus, I ripe a bonus to put my crown back on after I drop her off on Fridays. 👑

I see Sarina always grow new skills; she is a treasure chest and full of surprises. But I’ve out used my strength. All I want to be is her mother and let the future double handle the rest.

Remember my big fat dream!

 

On the autism spectrum, to fail does not mean you learn. In Sarina’s case, it means to suffer.

 

I’m almost done. What am I doing with this? Will I dance next Friday?

Only if someone holds space for Sarina. For now, my hands stay on the steering wheel with the one most important lesson to learn: Steer with ease. Soften my grip.  Discern well whenever possible! 

Let us take a breath again. Breathe in – pause and out – pause – repeat!  Are your eyes soar by now? Rest them for a moment and breathe again. I appreciate you. 

I cannot take my hands off the steering wheel if it makes Sarina crash. 

But I can do this: Balance effort with surrender. 👑

Surrender. Hallelujah, Miss Surrender. I welcome you and hope you join me! After all, you’re the sister to my oldest and oh so familiar friend, Mr. Effort. I love you both!

Together we will birth my dream, with my hands soft on the steering wheel. My nest will be empty this year!

Hang with me. Cheer me on. Believe. I need you! I want to be the proudest 🎶 Hallelujah singing mom and share it with you!

Embrace what’s possible!

🌷Always with Love, Manuela

 

P.S. This letter is part of a series “When you need your friends. Letters from a mom of an adult daughter on the spectrum.”