seeing the silver lining

I listened to my son tell me about the wrestling team supporting a fellow wrestler with a learning disability. He tells me of the cheering that the team did when this boy wrestled and won.  A first win for this young man. My son is proud of his team-mate and shares with me the joy he felt watching his friend win.  

When the team went out to eat after the meet, my son said he watched as this young man struggled to make the correct change.  He watched as the coach help him. He says it hurt his heart.

This is a familiar experience within our own family, so it was not surprising that my son felt such compassion for his team-mate. 

It is times like this, that I am once again reminded of how blessed we are to have had the experience to know what disabilities are.  Day by day stuff.  Paying for food. Overcoming challenges.  Succeeding in something that may be easy for others.

This experience was catapulted us into a place of compassion and understanding.  A place of seeing the good, even in what appears to be not.

If only the world could see the silver linings within the clouds….

autism is hard

Autism is hard.

I spent time this morning with a beautiful little angel.  Three years old with gigantic blue eyes.  Those eyes stared at the posters on the walls, the lights and the numbers on the carpet.  I never once saw her look at a face.  She made no sounds.  She lived in a world of her own.  My heart ached to reach her.  I wanted to see what she saw.  I wanted her to see me. I wanted her to be excited to play with me.  I wondered how hard it must be for her family. 

Next stop, hanging with a third grader who got sent to the principals office for a “bad choice”.  Another discouraged little guy that probably didn’t even know what the choice was.

Next stop, high school.  A teacher making comments about a parent and family’s priority.  Kids eating alone.  Kids walking in circles.  Kids sitting at computers, alone and completely in their own world.

It is days like this that I question my job.  It is too close.  Too personal. 

Working on the school district autism team and supporting staff is hard. There are too many kids, not enough staff.  Too much focus on academics and behaviors and not enough on learning style and core challenges.

Going home to autism is hard.   Wondering why her case manager doesn’t see that her working in a group is valuable and that it is okay that she doesn’t like it.  The fact she doesn’t like it is an indicator that we need to work on it.  Eating the same lunch every day to avoid talking to someone is an issue.  Wearing the same shirt and not wanting to brush her teeth is hard.  Being “that difficult parent” that reads the IEP and refers to data and legal rights is hard. Asking questions about programming is hard. Working for the district that my student with a disability is enrolled is hard.

Autism is hard.

and the glue was music

I more deeply understand today that giving up my own belief and releasing the death grip on the need to do it all myself allowed something extraordinary to happen for my girl.

An amazing friend shared the gift of music with  her.  She sang, she strummed and she was absolutely at peace.

The ease and gentleness.  The centeredness.  The absolute pureness. The connection.

For me and for my girl. 

And the glue was music….

compliance….or not

Let me preface this post with a deep breath.

The positive outcome was that the meeting ended and I went home. It wasn’t until the following morning that I woke up feeling like it must have been a bad joke. 

Autism.  Social and communication difficulties.  Emotional regulation.  Anxiety disorder.  Attention issues. 

The direct service providers NOT INVITED to the staffing: mental health providers and speech pathologists.  The district Autism specialist, not there. The administrator that has been in my corner since day one, not there either.  The fill-in admin was on his computer, probably checking email or even the latest scoreboard for that matter.

Communication needs written into IEP, oh an oversight.  Emotional regulation/mental health needs, oh yea another whoops.

I mentioned that there are over 1500 kids in the building, yet every teacher reported that she has minimal, if any, interactions with peers outside her tiny little special ed circle that typically includes a para.  BUT she is really good at showing the adults in the building her book.  Great.

I mentioned that she has eaten a chicken patty every day for lunch since August, NOT because she loves chicken patties, but because it requires NO communication.  You grab the plate and you go.  And even better, the lunch ladies that take the money “know her so she doesn’t even have to talk to them”. 

The elementary library job still hasn’t transpired. I reminded them that there are 3 other elementary schools within a 3 miles of the high school.  Maybe someone can call the other librarians?

Numbness. Bewilderment.  Exhaustion. 

All of that turned to outrage by morning. 

I guess the term ’compliance’ needs to be revisited, or rather ‘out of compliance’?

reality, acceptance and giving up

Is it acceptance or giving up to look at the reality of my child? 

Reality: She isn’t college bound.  She may not ever be able to work enough to support herself.  She may never be able to understand money or navigate a bus system to get from A to B.  She may not ever have the safety skills to navigate the community independently.

Acceptance is realizing these facts. Giving up would be to allow the next 4 years to be wasted worrying about obtaining high school credits and jumping through the meaningless  hoops of missing assignments and tests. 

Acceptance would be to advocate for IEP goals that address the core challenges of autism.  Giving up would be working on math concepts that are not functional.

Acceptance would be to recognize the extreme difficulty she has asking familiar people in her environment for help.  Or commenting on someone else’s topic of choice.  Or simply saying goodbye when she leaves.  Giving up would be to not see these as important.

I choose acceptance.  I choose to address the challenges.  I choose to fight the fight.  I choose to not give up  helping those in her school environment see the reality.

The reality is that she has autism.  The reality is she has limited intellectual functioning.  The reality is she has low adaptive skills.  The reality is she is amazing.  The reality is she has potential.  Potential to have success, defined by her learning style, her strengths and her being-ness.

 

 

quote of the week

After a successful trick or treating……

The girl says, “DAMN, I got some good stuff!”

finally….

Finally.  Finally a meeting that was productive.  Finally decisions were made in the best interest of my girl.  Finally her needs came before convenience.

Starting as soon as next week, one period every other day, my girl will be working at an elementary school library.  At semester, she will be alternating between working at the front desk of the YMCA and the elementary school in the afternoon. 

Her days at the high school level will soon be productive, meaningful and functional. Nothing against World History, but for her a job is far more meaningful than that class.

I see her experience in the elementary library to be filled with opportunity for growth and success.  Functional skills related to the tasks as well as many opportunities to interact with students and staff.  She will have to think, problem solve, interact, advocate, communicate—-the very challenges of this crazy thing called autism. 

Finally.  Now, we wait for the solution to become the action…….

 

 

life is telling me

life is telling me I am worthy

life is telling me to release

life is telling me to feel the pain

life is telling me to accept

life is telling me to allow

life is telling me to listen

life is telling me to wonder

life is telling me to cry

life is telling me to wish

life is telling me to let go

life is telling me to speak in truth

life is telling me to be

life is telling me to love

life is telling me to live

the blessings

I was gently reminded today that no matter what the challenges one faces, there is always room for gratitude and growth.  In order to find that place of gratitude and thus growth, one must allow the heart to open and the ”I can’ts” to quiet.

Three women in wheelchairs.  Three women that “cant’”……Today they realized that they CAN and they DO.  They are active in the  blessed practice of Yoga.  They are aware of the breath, the body and the mind.  They found the place of being centered.  They realize that while they face physical challenges, they can still experience yoga, breath and awareness. 

Tears of joy.  Tears of accomplishment.  Tears of gratitude.  These women are my heroes.

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The presence.  The lack of judgment.  The purity. The sense of complete acceptance of who they are.

Developmental challenges combined with the presence of Yoga.  The breath.  The body’s response to the breath.  Meditation in motion.

I faced each person in the class as we created the Star pose.  I asked each of them if they realized that they are each beautiful stars in the universe.  I got smiles, I got giggles and I got joy.

As we said together Namaste and held each others smiles as one, a wonderful spirit by the name of Dominic spoke, ” I love you, Stacie”….

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Heroes.  Inspiration.  Overcoming challenges. Love. Finding your life purpose……

Blessings.

the shirt

At the door this morning I saw THE shirt, the SAME SHIRT I have seen on my girl’s body for days. 

The bus was waiting.  Let it wait.

 CHANGE THE SHIRT. 

Done.  The shirt is in the trash.  Not the best intervention, but I am done with the shirt.