Raise My Son in a Way That Honors His Uniqueness

Today I am feeling the tides of anger over two-year-past pain creep upon me.

My chirpy, life-coachy self is harping on me… you know “let it go” and “be present to what is, in this moment” and “you can’t change what happened in the past and you can change your opinion of it”... all that stuff which I know…

I would just love to sit down for a cup of tea with someone who gets it, who wouldn’t offer advice but would quietly sit there and listen, nodding occasionally and refilling my tea. Even sitting in companionable silence would be welcome.

Sam starts mainstreaming again today, with Mrs. Cortez, who knows nothing about autism. Well, she reported she had a student with autism in her class who was very low functioning and had a fulltime aid. Doesn’t sound like she got past that barrier.

Frustrated. Naturally?

Bumped into an educator at Barnes and Noble, one of the best if not the best my children have experienced (he taught Emma in third grade.) He told me the same principal who broke the law and failed Samuel made his life so uncomfortable at the school that he left there. He is now teaching fourth grade at a different school.

Said he would welcome Samuel into his classroom.

I am berating myself this morning for still feeling so angry at the original principal.

Sam was awake early this morning, nervousness and exciting moving through his ever-taller eight-year-old self. We played our old favorite games while we waited for Bus 249.

He was so happy when it arrived, he didn’t openly lament the loss of last year’s driver, the exceedingly punctually, KUZZ listening Miss Waltz. His classmate from the past two years was sitting in his usual seat up front. “Hi, Samuel!” he said.

I told him how sorry we were he wasn’t with Samuel anymore in Room 21. “I am in Room 24 now. I am 9 and am in the fourth grade.”

I remember two years ago when the then-teacher said he would be the next one mainstreamed. He is still in a Special Day Class, still in what I refer to as a “Special Ed bubble.” I know some people believe it is best to keep children in Special Day Classes. Some parents insist it is better, that they get more attention there, that the funding is there – but I know my child is going to need to function in the real world with his atypical neurology.

He won’t have a Special Day Class when he gets a job or goes to college. I want that for him, if that is what he wants. He is smart enough. He needs to learn to negotiate in the world without excessive protection.

We walk a tightrope, we parents of children with special needs.

Katherine stood with me next to the bus, waving as Sam got settled into this seat. We smiled and waved and Samuel ecstatically waved back.

What a difference from two years ago.

Samuel is starting the year part time in a Special Day Class and part time in a General Ed third grade class. We met both his teachers last Friday. I gave them a four page mini-biography of Samuel, complete with photos. Sam’s aid from last year requested a copy as well. I had thought she knew what she needed to know, but I realize now she doesn’t.

I want to buy each teacher and maybe the Speech/Language therapist, too, a copy of Ellen Notbaum’s Ten Things Your Student with Autism Wishes You Knew .

Neither teacher knows much about the Spectrum. I could complain about that or I can choose to be proactive.

Any guesses about what I am choosing?

http://is.gd/21OqC

He is so cute!

Two Samuel and Mommy Videos for your viewing pleasure!

http://www.youtube.com/watch?v=oCNIZNg_gyQ

http://www.youtube.com/watch?v=Nm962JDTOTg

to a birthday party of a little boy from church – his Mom and I have been friends for many years, we even traveled together to St. Louis for a convention when the boys were little.

Sam was so excited to be included, and though he didn’t socialize much with the other kids, I knew how pleased he was to be there and at times, how courageous it was for him to be there.

The most significant parts of the party were two:

One, the care and consciousness that went into buying the gift for his friend. We spent two days considering what to buy him, and as we stood in front of the board games at Target, Sam felt utterly convicted that he must buy “The Game of Life” primarily, I think, because Sam knows how much fun HE has had playing “The Game of Life” and he thought it was something the boy could do with his family, like we do with our family.

Two, when the children were done with all the play and sitting to eat snacks and cake, Samuel said to the boys at his table, “Would any of you like to share my Sponge Bob Cheese-its with me?”

One of the other boys accepted, graciously, and then shared his cookies with Samuel.

When the birthday boy received his gift, Sam was practically jumping out of his shoes with excitement.

He thanked Samuel, “Very Very Much!” and when we drove home and I asked Sam what his favorite part of the party was, he said, “When (The Birthday Boy) liked my gift.”

I remember before I knew about autism very much, I read how children with autism were isolative, unable to relate to other people.

My little guy wants nothing more than to relate to other kids, to have them like him – all aspects of him – and include him just like they include everyone else.

a place Sam adores.

He faced one fear after another and then, when he was tired, he almost melted down yet used self prevention techniques! to stop the meltdown from getting any larger than it had to be.

He set a personal goal to go on the water slides this year. He was tall enough, he knew how to swim, he was unstoppable.

The second time he came down in the blue slide, a twisting tunnel of unseeing scariness. I stood outside the area where the children come down from the tunnels and I could hear Sam’s voice, “I can’t see, I can’t see, I can’t see ANYTHING!” before he tunneled into the sunlight, laughing, relieved.

He approached the lifeguard, who was waiting at the bottom of the slides in separate area of the pool. “That was super duper scary because I couldn’t see ANYthing!”

He kept talking to himself as we walked out of the pool and ran right back up the stairs to go on the Super Duper Scary slides again.

This went on for about an hour and a half. We started the process of warning him we would be leaving the pool soon, so he went on to a different part of the aquatics center, as is his habit, to experience certain things before he leaves.

Somehow, at some point, he got frustrated and upset. I happened to be close by at the time, with my camera in hand. I could see Sam’s face collapse into near tears of frustration. He was standing, chewing on his fingers, scanning the area for help. I was near, his sisters were near, but he went to the pool authority figure, the lifeguard, who with zero training in assisting a child on the autistic spectrum, did for Samuel exactly what Samuel needed.

He listened to Samuel’s upset.

He gave Samuel complete, one-on-one attention.

He gave Samuel a simple suggestion. “Go try it, now. Ask them to give you a turn.”

Samuel nodded, moved to his pool plaything and asked for a turn.

They gave him his turn.

Crisis averted, smiles returned to Samuel’s face.

I managed to catch it all on my camera.

I am repeatedly surprised by how well the life guards at our local parks deal with Samuel, who they don’t know has been labeled with “Special Needs” yet they calmly, intuitively, give him exactly what he needs over and over and over again.

Job, well done.

It seemed every day on our trip we were engaging Samuel’s fears and anxieties. I read over the guidelines for taking children with Autism on vacation and I think, “Wow, I guess none of these parents ever take road trips where they stay with a variety of people nor do they engage their child to work through and with their anxiety. I must be a warped parent of a child with autism.”

No, I don’t think the “warped parent” is it, I think it is just I have a less conventional approach.

On our trip we rode buses, ferries, trains, tow-trucks and planes.

Sometimes we were able to prep Samuel for the newest scary-to-him adventure, such as on the plane.

Sometimes they just happened, like the tow-truck.

Sometimes, like the airplane, we took several days of talking about it in his presence with excitement and positive attitudes. By the time we took off, Samuel was crowing, “This is the best thing ever!” Sure, he was nervous and afraid, but he was completely engaged in all of it, not playing a video game or with ear plugs in his ears or goggles on or anything separating him from the natural sounds and experiences of riding a plane.

He was also bathed in prayer. We all were – for the entire trip.

I will always remember the smiling faces of the other passengers who were reminded that flying is indeed a miracle, and the process is fascinating as well as frightening.

With Sam, we focused on the fascinating, which took care of the frightening.

It occurs to me, this is true in much of life.

I remember home-schooling Sam, again, taking an unconventional approach. “I am following his fascinations” I would say, rather than an every-day curriculum.

In this photo, you can see the fear in Sam’s chewing on his hand.

You can also see his presence by being there, fully, on the ferry. He had never been on a boat like that before – out in the middle of the water, disconnected from land.

He stayed present, and afraid, and building his boldness one scary event at a time.

I woke Sam this morning, reluctance clinging to my shoulders as I patted his back. I looked at his profile, still enough baby in him to satisfy me yet more little boy on the cusp of big boy now.

His eighth birthday looms.

His eighth birthday?

How did this happen so quickly?

These early morning moments are among my favorite. Early morning, before anxiety can pierce either of our hearts. Early morning, before he gets caught up in his ritual-of-the-moment.

In this time when the outside air is still cool, I can stand beside him remembering especially my love for him – forgetting the struggles and hardships.

In the early morning the love is easiest to see.

Collaboration between Coryn, Samuel and Me