I love your brain

Independence has become a challenging proposition for our family.  The boy is nearing eleven years and is starting to crave the opportunity to have some independence, and we want nothing more for him to have this.  The question is, how does someone who is dependent on others for nearly everything, gain independence?  What does independence look like to him?  For him? 

His first taste of a form of independence came when he started pre-school.  He didn’t have the anxiety about mom leaving him somewhere.  He welcomed it.  After three years of nothing but mom, he was ready to test his skills with out me.  He quickly learned that most of his basic needs could be met with the assistance of other trusted people.  Other people could, and would, take care of his personal needs.  Could learn to feed him.  And could take him around the pre-school classroom and play yard and facilitate his play and learning.  In the early years, the four hours of pre-school were enough time to be away from me.  He was happy to be back with me for the afternoon.  

Once he started elementary school, where the hours were slightly longer, he again was satisfied with the amount of time, and experiences, away from me.  I started working part time when he was in 1st grade and hesitantly tried the aftercare program the school offered.  Turns out he loved that nearly as much as he loved school, and the growing hours on his own (i.e. without support of his parents) was exactly what he craved. 

I understand and appreciate that he needs to have independent experiences and life outside of our family.  I want him to have that.  I wish that he could share it with me though, through telling me about his day or his thoughts about particular things.  That’s where it becomes difficult for me.  There are so many things, even simple exchanges with friends, that I know nothing about, that I’ll never know about.  Things that other children can share with their parents if they choose to.  Things that perhaps I should know about. 

The new independence that faces us is how to allow him to have experiences with friends that don’t require a parent to be the only parent in the swimmig pool, or in the playroom, or at the birthday party.  He needs someone, an adult, to be with him to support his needs, but he absolutely does not want one to be there.  We’re experimenting tonight at swimming/bbq event.  We’re bringing one of his paras (para-professionals are the twenty somethings who provide support at school), to the party with us to swim and do kids stuff with him and the other children.  We’re hopeful that it will feel less invasive to all if it’s not a parent.  If it works, perhaps that will be the new wave of independence.  Someone cooler, hipper, younger, than parents can take him to parties, and fun…but still be able to handle the needs aspect of his day. 

I can’t begin to imagine how it must feel to want something so badly and to know that it’s something you can never really have.  It breaks my heart…

The boy surfed on Saturday for the first time since he had his surgery last year.  His last surfing outing, around Father’s Day 2011, didn’t go so well.  It was a cold day, and the water was still really icy.  Sitting out waiting for waves lost a lot appeal, and only catching two waves left my shivery, blue lipped boy not all that keen to surf again, despite his years long passion for it!  He approached this past outing with apprehension and nerves.  We tried not to get too excited or invested in the day because we’re slowly learning that hype translates to either overexcitement or whining.  Neither works.  So we went to the beach, and voila…there were the TheraSurf crew and friends waiting to sweep him into the ocean!  Wrangling the boy into a wet suit is an accomplishment in itself…He’s not able to help, and his spasticity kicks in so his limbs are bending and straining to go one way and we’re trying to stick them into tight neoprene sleeves and legs in a completely different direction…But he got suited up and tucked into a life vest, plopped on a surf board with a great surfer behing him, and off they go…paddling out, and then paddling in to catch their first wave…

He’s still looking a little nervous…We’re feeling a little mean for making him do it…but we feel like if just tries it again and remembers how much he’s loved it in the past, he’ll get over the apprehension from last summer and from the surgery.  And they catch a wave…and another and another…and the boy remembers…

Even more so after we got home and the next day.  Sometimes it takes him time to process experiences a bit before he connects the emotions to the experience.  Now when  asked about it, it’s all smiles and laughter, and when asked if he wants to go again, it’s a giant YES!!!  My beach boy is back!

Our school has an annual event to raise money to sustain our music program. As an LAUSD Charter school, our already depleted funds were cut even more significantly and our music program was on the ledge. The Walk-N-Roll-A-Thon was born out of desperation and that first year raised nearly $60,000, keeping music in our school, and providing a slush fund for the following year. The 4th annual was this past Friday. The whole event was terrific. I actually chair the event and with the help of lots of wonderful volunteers, we pull off three separate walks throughout the school day. Middle school, kindergarten, and grades 1-5. The kids collect sponsors and then walk around our track to fun soundtracks and get stamped on their lap bibs for each lap. It’s pretty simple, not a lot of overhead, and it’s highly profitable and fun. There are prizes for the highest lap earners in each grade and prizes for any class who has 100% participation. And everyone, parents, teachers, children alike, will agree that the biggest prize is keeping music in our school.

This year, my biggest prize was watching the boy walk four laps around the track with the aid of his para-professional Chelsea. He’s never walked during the event before. He’s usually a roller. This year he wanted to walk and walk he did. I even saw him running a little bit! It was amazing and there were joyful tears from quite a lot of people who saw him moving himself around the track. This just five months after he had hip replacement and reconstructive surgery. This just five months after he had his tendons lengthened. This just five months after hell. I don’t think anyone expected him to be doing so well even five months after the procedures. He was in casts until mid-September and only starting to bear weight in October. I don’t think anyone expected him to be so strong and sure footed. And yet he walked, ran and danced his way around the track – Four Times!! I couldn’t be more proud or inspired by the boy and his wonderful walk…

Time is one commodity completely eludes me.  Despite my efforts to stretch the given twenty four hours each day, I find that they’re eaten up by little bites of five minutes. My husband is traveling so I’m solo for the next coming days and the bites have become very defined:  It takes five minutes to wake and unwrap  the boy (he sleeps in bracing), five minutes to get him settled and find a TV show for him to watch, five minutes to get his breakfast ready and coffee brewing, five minutes to run through the sixty emails that have arrived since bedtime, five minutes to collect and start a load of laundry, five minutes to toss the ball to the dogs so they feel the love, five minutes to take a quick pass at cleaning up the kitchen, five minutes to get the dogs fed and to ply me with coffee, five minutes to shower, five minutes to dress, five minutes to dry my hair, five minutes to attempt pretty, five minutes to collect the dynavox, homework, lunch and pack it all up in the car, five minutes to make up the beds and wipe down the bathroom counter, to get the boy changed and dressed, five minutes to do braces and shoes and get him set in wheelchair, five minutes to get him tethered into the van and get the music set up and us ready to leave for school…and we’re off…

Don’t get me started with the bites taken commuting in traffic.  Yesterday I drove the boy twenty minutes north to school, returned south for an hour and forty five minutes to work, and then in the afternoon an hour from work to pick him up at school and twenty minutes to home…Over three hours of my days wasted driving.  Oh how I wish the commute was just five minutes!

One of the more difficult challenges of having a non-verbal child is determining what they are capable of in terms of learning, comprehension, and communication, and how to best provide the boy with the tools he needs to express himself.  It’s no small feat and it’s never going to be just one single answer.  We verbal people take it for granted that we just open up our mouths and words tumble out without much effort and sometimes without thought.

The boy can vocalize, but the hundreds of muscles in his mouth and throat don’t all coordinate themselves so the words don’t all come out clearly.  I know he has a lot to say because of the enormity of the things he’s able to communicate without the use of words.  For him, a look, small gesture, or single sound can say more than a thousand words from any one of us.  It’s remarkable actually.  His friends honestly believe he talks to them, and they understand him.

For several years we’ve been trying to find the best communication device for him to use.  He uses a voice output device that allows him to form sentences or choose words or actions and to “speak” them.  We’ve tried several different devices some with limited success, and currently one with moderate success.  Finding the best way for him to access it seems to be the bigger problem that needs solving.  He’s tried head switches with some success, and hand switches or buttons that work, but his hand coordination is slower than his brain works so frustration creeps in.  Eye gaze is contemplated, which is very Stephen Hawking…The device would be linked to his pupils so when he rested his eyes on the word or sentence, the device would read the gaze…perhaps a simplistic description but very cool nevertheless.   These years are the building block years.  Once the right combination is found, the sky’s the limit.

I spend countless hours wondering what goes on inside that beautiful brain of his.  I know there are scads of brilliant things running through his mind that just need an outlet.  It frustrates me, though I can only imagine how much more frustrating it is to the boy.

I thought I’d explain the title of the blog…My former blog was called Mindless Musings but it wasn’t available on word press leaving me to come up with something else.  I love your brain is a line a song by Frank Black & The Catholics, as well as something I often tell the boy.  I love your brain, you gotta beautiful brain…And he does.  Without giving it much thought, this blog was named.  Perhaps it will change one day, but for now…it works.  In some ways my life is what it is now because of the boy’s beautiful brain.  12 minutes without oxygen at birth left his brain a little different.  His brain has trouble transmitting signals to the rest of him making movement and speech difficult for him.  Fortunately, his congnitive function is strong and he’s bright and capable.  His determination carries him through the rest.  There’s very little that he wants to do that he doesn’t figure out a way to do it, sometimes on his own, and sometimes with help.

Because of his beautiful brain I spent the first seven years of his life with him.  I had not intended to be a stay  home mom when I contemplated pregnancy.  I had a career I worked hard to climb.  Staying home with him was necessity but ultimately not a sacrifice.  Having had the time with him, I understood that I would have wanted that time with him no matter what the circumstance.  I would never have been able to tear myself away after just a few short months of maternity leave.  I wouldn’t trade those years for anything.  I work full time now, and he’s immersed in elementary school and afterschool activities which make him want to live at school most of the time so we both survived the transition to independence without anxiety or angst.

So here’s to beautiful brains…whether they belong to the boy, my husband, strangers, or even me sometimes…they inspire, insight and ignite!