His Brothers Keeper..........

He stands by the door waiting for me. He has placed the leash on his dog, as I get my keys and look around to make sure I have turned everything I need to off. I glance at him, everything about him from his boyish voice cracking into the depth's of a man's intonation to what seems like the daily changes in his height, is in transition. The cherub like quality that once defined his beautiful face has been freshly scrubbed away revealing glimpses of a maturity that is slowly reshaping his features. There are shadows were facial hair is beginning to show. A softness in his expression remains. We no longer stand shoulder to shoulder. I look up to my son. It use to be he would fit perfectly under the arc of my arm, now it is I that find myself anchored by his.
So we walk.......

In sync our steps normally take on the rhythm of our conversation, which runs the gamut from music and politics to Autism and his brothers future. It weighs heavily on his mind. The focus in the media, in our homes, in our discussions is always on symptoms, on the disorder in general, on the controversial aspects vaccines, genetics, environmental triggers, lack of funds, the devastating financial burden, the lack of help available for children as they age out of the system, on and on it goes....but what is often overlooked is the very real impact this disorder has on a family, especially on siblings that sacrifice so much more than most realize. It's Autism all the time for the siblings as well. As much as you try to focus your attention on all your kids, and celebrate each one for their achievements, the truth is that with Autism it's not just packing a bag of non allergy treats or relying on a social story to prepare, it's living with the constant stress that anything that you cannot control can happen to create a complete meltdown, and the sibling will be overlooked in the whole ordeal. You can come equipped with the Autism version of Felix the Cat bag of tricks to help everything go smoothly, but possibility is a constant presence with the family, and siblings are constantly on guard.

But Will, Will is something special himself. Will has always been extroadinarily compassionate and sensitive to his brothers needs. Will has always had a soft spot for the children in Gabe's groups. He has always been drawn to research, and he spent his own time thinking about how he could help Gabe get better. Every year, the request was the same on his Santa list, cure for his brothers Autism. When he blew out his candles on his 6th birthday, he whispered "don't worry mom, Gabe will speak soon caused I wished it. If I wish it, it has to happen." When we changed Gabe's diet, Will would read labels and help me pick out what would be ok. He and Carlos also followed the diet with Gabe until we could get Gabe adjusted. When we did Floortime and RDI, Will was there, upfront, trying to pick up hints on how to play with his brother effectively. And when we spent every other day driving all over Long Island taking Gabe to his therapies, Will and Carlos were in the backseat, instead of on a playground. My guilt was huge, and as much as I tried to compensate and give them each thier own time, I could not change the reality that when there is a chronic disorder with such a monumental ripple effect in all aspect of life no one walks out unaffected. It profoundly defines the way you interact and see the world.

On one of our previous walks a few weeks back, Gabe accompanied us on his scooter and raced far ahead of us. Will confided that he had been thinking alot about what happens when I grow too frail to deal with Gabe, or what would happen when I am no longer here. He turned to me and said," don't ever worry about Gabe mom, I will always take care of him. I'm going to be a director, and Gabe will live with me. I will make sure he has a good life. I will make sure he is safe. I love him". "Hey Gabe" he called, "when mom gets old you want to come live with me in the city?" "Sure!" Gabe yells out, "I'll bring my wife too".......Now, Will laughs and says "oh crap!" and then gets serious and says, "mom, he wants to get married....do you think he ever could?"...but I couldn't answer, I couldn't get a word out....because I couldn't get past just how spectacular my Will is. And how unbelievably blessed I am to have a kid who gets that part of being human is the responsibility to make sure that we care for those that struggle to take care of themselves. Will is kind, intellectually gifted, he is talented, he is philosophical, he is compassionate, he is sensitive, he is by no means perfect, but he tries so hard to do the right thing by others. Gabe's milestones are due in part because of his brothers, and how each one of them relates to him. Carlos challenges him, Will guides him. There is no doubt in my mind that Gabe regained his speech because Will wished it, because Gabe willed it, because we all worked so hard for it, because everything about our family is a group effort...and because we were extremely lucky.....there is no doubt in my mind that my job was made easier in many ways because Will is who he is and has happily lent his support.

But today's walk I want our conversation to remain focused on him. I have been having a hard time these past few weeks thinking about Gabe and summer, and middle school and all the uneasy changes I see coming our way, and the obscurity of it all. I know he senses this and he wants to ease my mind, but I want for this block of time to be all about him. I watch as the sun highlights the gold in his long brown layered hair, how it swoops around the slightly curved strands of hair to frame his face as it gently brushes against it. I listen as he describes his latest ideas for his cartoon series, and then skips from that to what bands were overlooked in the Rolling Stones list...he takes this personally....His face lights up when he gets a chance to share his thoughts, the smile starts in his eyes and when it finally makes it to the corners of his mouth he is transformed. We both feel for poor Reeses who still struggles to navigate his way through a
cones view of the world.....It's an hour from our front door to the end of the road and back.....it's good to be home.....

So he makes his way to his room. It's dark, it smells like a gym locker, there are guitars, cd's and clothes scattered throughout, a stereo system and a computer is set up to the right and left of his chair. He is a teenager, these are the signs. He is slumped in that chair, feet on his bed, Pink Floyd serenades him while he searches the internet.....Next year he becomes a high school student, and before I care to accept it, he will be moving on.....But at least for a few more years, I'll still have him with me, anchored by his presence........

and his love.......

His brothers keepers......his mothers pride......

April Fool

Often the emphasis is on what the child cannot do. Often the emphasis is on evaluations, on questionnaires that take you from 1 to 5, always to never...Often the emphasis is on what would be the best early intervention program, best protocol, best diet, best therapies....Often the emphasis is on parents who would move mountains to make sure their child has a fighting chance...Often the talk is inspirational, motivational.......

But more often than not, I find myself strapped by love to a pendulum swaying between guilt, desperation, fear, anger, determination, education, advocacy and hope, I spend so much time in the guilt and hope the rest blurs into one stroke. I see him growing faster than I am able to process, chronologically 11, developmentally no where near...He wanting to connect with others, and they so much further ahead of him. He had a meltdown today, and after he left I had one of my own. It's April Fools day and for the first time ever, he wanted to pull a prank on his classmates. The prank he wanted to pull off in his mind took the shape of a circus, and everyone was to participate. What tipped me off to this was the big white plastic hefty bag he put all his stuffed animals, instruments and costumes in, and was pulling towards the door. "Gabe you can't take this to school" I say..."But this is my prank" he anxiously cries. I poke and pry and he tells me his plan and I try to tell him that is not a prank, I give him an example, I tell him we can come up with a good one together....but he melts. He wants to invite his whole class over for the circus in his room...round 2...I try to handle it delicately. I tell him you can invite a friend tomorrow to come and play with you. The meltdown went to the next level, on the floor, banging his head with his hands, incoherent. He was so confused about what a prank meant, he tries so hard with the jokes, he tries so hard to figure out what our expressions mean, and we forget the sensory issues, we forget the processing issues, we have no patience and expect him to have all the patience in the world with us. But he was so lost inbetween worlds. He was so lost inbetween meaning. He was so lost for words. So he cried, and tried to gather himself up, tried to pick up the pieces, while I swayed between frustration, anger, tremendous guilt, trying desperately to get to hope. His bus came when he was just about calm. He gingerly put his coat on, slung his arm through the loop of his backpack and hoisted it perfectly in the center of his back. With his head hanging low I watched him methodically place one foot in front of the other. Today the bounce was gone. Later in the day I know he would have a science test, the universal irony is that the test is about the environment, mutations, inheritance, structural adaptations, behavioral adaptations, pesticides, and how they affect us. He has no idea how long I have studied these very things, though not for a class....for him...I watch him take the 2 steps up and disappear into the back of his little yellow ochre school bus. The doors close, and my heart misses a beat.

More often than not it is a struggle for every mom who loves her ""Gabriel to balance the unfair weight of trying to give everyone equal time in the spotlight while running a household, running errands, tending to everyone's needs, building experiences and memories while creating a warm comfortable life. Throw in special needs and the guilt of feelings associated with not being able to fix it all, the frustrations, the mystery, the injustices, the not being able to be superwoman when you really need super powers....When doing the best you can sometimes, or most times isn't enough.....when all you want is for your kid to have a chance at living a good, happy, healthy life....suddenly you are instantly strapped onto that pendulum.....

It is not lost on me that Gabe was able to tell me what it was that he wanted to do. That took alot of hard work, alot of research, therapies, and lots of luck...I stand on alot of shoulders...I feel unbelievably grateful to have that. Seven years ago I was in tears holding onto his multicolored battery operated oinking pig begging him to please tell me who gave it to him, and I got nothing...no eye contact, no connection to my tears, no recognition of my presence, he turned around, gave me the back of his head and hurried off to line something up and then to climb onto something else. So I do know hope. But there are those days, when you are at a loss between 2 worlds, between all meaning, when you have trouble with expressions and making sense of it all....and what feels like a circus somehow has to be a colossal prank, and it's April Fools, but it's no joke, because it is life lived on a Spectrum strapped onto a pendulum by love......and the swings it takes, from one instance to the next.....is as unpredictable as life is.....

Often the emphasis has to be on everything....................................
and everyone....................
and pendulums.................
and swings............................

and love.