A Small Step Toward “Normal”

It’s hard for me to think about Adriana going to school by herself, without her mom or me by her side.

The thought of her in a classroom with a dozen or more kids — without someone there to lift her up if she falls over — terrifies me.

But of course, it will happen. She will go to school.

She will succeed and make new friends. She will fail and cry.

She will be strong. She will be weak.

She will be a kid.

Her first class


Adriana’s art class starts with story time. Cushions at her side and back keep her from falling.

This week, we took what I think is a huge step in Adriana’s life.

Gaby enrolled Adri in a summer art class at one of the local libraries, and Monday was the first session.

Adri’s first “class”.

During story time, the kids gathered on mats on the floor. Gaby sat Adri at the front and placed cushions at her side and back to keep her from falling.

Isabella, who is a classmate of our son Santiago during the regular school year, is taking this same class. She sat next to Adri and was very protective of her.

It’s a wonderful feeling when other children see Adriana and want to be near her.

Kids seem to have a natural kindness about them and a desire to help when they think help is needed.

Adri was attentive during story time. She didn’t participate when the teacher asked questions, but that’s o.k.

I have a sense that soon, the teachers won’t be able to keep her quiet.

The art project


Adriana and Isabella getting ready for their art project.

Next, the kids moved to the circular tables to do some artwork.

We have a positioning seat for Adri called a Seat2Go. It’s designed for special-needs children, and has a belt that straps around her chest to keep her from losing her balance.

She sat patiently and participated without a problem.

The project involved some painting, as Adri brushed glue onto a picture and then applied glitter on the glue. With painting, she exercises her fingers, hands and arms, which improves her fine motor skills.

Slowly letting go

Gaby was present the whole time, but she tried to make herself as invisible as possible.


Adriana applying glue to her picture.

Adri would look to her occasionally, but Gaby was sure to direct her attention to the teacher if she had a question or problem.

Adri was fascinated when she asked the teacher a question, and the teacher actually answered her!

Her mind, which is in no way affected by spinal muscular atrophy (SMA), was no doubt absorbing every experience (as tiny as they may seem).

What’s most important is that she’s now part of a group of classmates working and learning together.

We’re starting her off slowly – just two days a week for a couple of hours at the most.

Adri does get tired, even though the physical work seems minimal. Her muscles can only take so much at a time.

Signs of strength

art class_octopus

Adri showing off her painting from today’s second class.

With a summer full of therapy and activities, she’s up to the challenge, and she’s showing signs of greater strength.

Just yesterday, I was holding her with her back against my chest.

I placed her feet on a short wall and told her to push with her legs.

Normally, I feel a slight push, but this time she pushed strong enough to make me take a step back.

Seems small, I know.

But I pray for the day when she knocks me over!

6 thoughts on “A Small Step Toward “Normal”

  1. Great to hear that she is showing progress. I love reading your posts cause they are inspiring to me. You all take care and may god bless you and your family.

  2. I have been fortunate enough to work with special needs children in my PE classes and you’re right about other children stepping in to help in any way they can. What a wonderful experience for Adri! Thank you so much for the gift of your blog. You will never know what it is doing for those of us who are blessed enough to be reading it. All my love 🙂

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