Stuck on Sticking

In the catacombs of the Miles 'Austism Spectrum' resides a very unique ability for him to get stuck on doing certain activities. Whether it's putting a CD in and out of a sleeve over and over again, there is always something that can happen wihout notice to get him stuck. Usually, it is the act of dumping water from one cup to another. Other times, he will destroy a granola bar to the point of not being edible becuase he doesn't want the package opened. If one attempts to open a granola bar or raisin box without knowing his non-verbal desire to have them closed, it will turn into a crying fit. A HUGE crying fest. But, I have to say, he gets over things in a relatively short amount of time. I have noticed at the Autism clinic that kids with straight up autism cannot get over things. It lingers and stretches in painful blocks of time. So, overall, I'm kind of endeared by Miles and how his brain works. Sometimes I'll stop and watch him for minutes and he has no idea that I even exist in the room. Over and over he does his cup thing or CD sleeve activity and is completely oblivious to the world. Stuck in his own fold of time and not wavering for a minute lest the world will hear him roar.

Miles Video

I finally crossed a personal bridge and have decided to produce an autism video highlighting Miles. It has been something I have thought about quite a bit over the past several months, but was reluctant to do it. My hesitation is due to the fact that I don’t want this to possibly be something that Miles would not like later on down the line. You know, mass dissemination of something like Autism or Developmental Delays is a slippery slope for a little guy and the road ahead. But, I feel as though Carrie and I can produced a quality piece of video that will help others like us either cope or seek needed services for a child that is not diagnosed. We are going to interview our behavioral therapist Nancy and a host of others to deliver a quality piece. As of now, I have been working freelance for Current.tv and the plan is to see if we can get this piece aired on National Television and hopefully provide a good dose of education and awareness about a huge mental health issue facing the kids of our country. As the numbers rise and many new parents have to face the reality of Autism, anything that can be presented well with the virtues of therapy is going to be a must.

Coaxing My Sense of Things

I was telling Carrie last night that the silver lining of having a son that is deveolpmentally delay like Miles is that we get to hold onto his childhood for a bit longer. I always hear parents bemoan that their kids grow up way too fast and that their childhood is gone all too quickly. As Miles hits his proverbial milestones in a crawling pace, we get to savor the little perfunctory toddler developmental moments with awe. This is the way that I convince myself not to go down the darker path that could lead to withering for Miles and the family. I have to see that half full glass teetering there on the tabletop as our Miles takes his time through this reality. He's a late bloomer - someone that ages well with the wine bottle and I can live with that notion. Sometimes these revelations are paramount to keep the laughter rolling and the therpay sessions relevant.

Kindergarten Training

Carrie and I used to talk about how it would be to drop Miles off for his first day at Kindergarten. Well, now that he goes to the ABC Clinic for 4 hours each Tuesday and Thursday, the Kindergarten clock has accelerated. Each Tuesday and Thursday, I drop Miles off at the clinic and hope that his little kid lip and wet eyes don’t go south. I know it’s the simple longing, but I want him to meld right into his therapeutic environment and tear down the hall towards his tiny autistic pals. There are those days that he lumbers up the steps with his red lunch pail in hand and goes straight towards a red watering can to water his favorite plant out front. The plant is singed brown from neglect, but he likes to go through the ritual. Then, there are other days that he clings to my chest and simply won’t let go. These are the days that are excruciating. Once I have him pried off my chest, he begins the whimper as I leave towards the front door. I always explain to him that I will see him soon and that he is getting the good therapy he needs to be better. His level of comprehension is such that this usually soothes him and I’m off. All of this is just tidy practice for when I have to really drop him off for his first day of Kindergarten after all of these hours hopefully get our boy mainstreamed for regular kid school.

Macro Miles View of the World

I hit that wall this last Sunday with the behavior of Miles and it wasn’t pleasant. After a long day of discipline and constant motion, I had walked around the corner during a very brief spate of relaxation to see him with the cat’s tail in his hand and pulling this terrified creature with all his might. At this, I put him in time out and his tears began flowing. And, I started questioning all of my parental tactics. Earlier in the day, he had been slapping at his mom and I, along with throwing things. These are relatively recent, and terrifying Miles developments. And they make us nervous in our attempt to heal and mainstream our boy.

This whole cat tail pulling maneuver has happened quite a bit over the several years that Miles has been around him. And it just doesn’t stop. So, after this stunt, I was really in a bad way. Just questioning my parenting, therapy and the entirety of a process that feels unbelievably overwhelming. And as my emotions overtook my rationality, I had to ease back and go on a walk with Miles and Zen to just ease my brain and realize how good it really is.

On a very macro level, I understand that our creator/god gave us Miles according to how we live our lives, raise our existence and forage forward. Thus, we were given an enormous challenge with Miles because of the way we are and our overall disposition. As a result, we have a hard road ahead of us, but the incremental joys are blinding. I love seeing our Miles doing things that he has learned and watching the joy he infuses into the passing world when we are out in public. When he squirms at the delighted applause of us and therapists at a new task acquired, it gets me revved up in ways that few things in life can. And, when folks, particularly the older folks, smile and stop to marvel at this little box of energy puncturing their reality, I smile more at the coolness of a kid I call my son.

In the end, I dig what we are doing and have no doubt that it’s the most efficient use of our time and energy to get our boy adapted to this very complex reality we are in. And as time marches forward, the progress of autism funding and awareness is only going to bode Miles and us that much more. In this moment of calm, I merely wanted to point out something every parent has to deal with that tries as hard as they can to strive in this life in every possible way – and as each day ends, I know that my family and our collective energies will lead me to understanding that macro meaning of this life and that’s quite cool.

Institutionalize Me

Recently, at a Wal-Mart checkout stand four-people long, all brimming baskets with foodstuffs, and Miles doing this lovely new sound which I can only describe as a cross between a siren, a tyrannosaurs rex screech, and an ape grunt, I had the opportunity to thumb through an issue of People magazine. I was interested in reading about “Brittany and her Boys” but, unfortunately or as fate might have it, I fortunately came across an article about autistic children being killed in group homes. I made a very poor joke several week ago to my mother that if “The Baby” didn’t stop pulling the hair of every coiffed, ribbonded, curly haired toddler he saw at the park, pool and school I was going to institutionalize him. Several of the parents in this article had had to put their kids into homes for a variety of reasons and they had ended up dead. The bulk of the article was focused on getting quality people, with some training and education, to work with these children…always a good idea. But the thing that struck me the most was a couple who had their autistic son institutionalized because after several attempts at potty training with no success they didn’t know what else to do. On so many levels I was enraged, saddened, and apathetic. I felt so sorry for them…I felt like I could have helped them somehow put them in touch with the right people or told them about ABA or even just said…So what -diapers forever…you’ll always know he’ll fall asleep fed, dry and loved…OR SOMETHING. Such needless suffering for everyone involved…The child, the parents and even., I would imagine, although I don’t’ know, the aide who ultimately was responsible for this child’s death…The aid who had no training in dealing with autism it seems. I am not a blaming kind of person…but somewhere along this road I am traveling I might become one…I could care less about No child left behind, or low test scores because of high special needs population in certain districts…I probably should, but I don’t even care about this shit for my 9 year old…It’s a test…they are everywhere, ya know? It’s all about money now and the whole thing sickens me. I guess my point in writing this as it always has been since I started this blog is to get ideas out there to let people know that there are so many alternative so many choices…So next time you are at Wal-Mart thinking about having your yodling scrambling perfect baby boy institutionalized pick up a couple of People Magazines and think about how sweet they are when they sleep.

Miles Leaps

As summer winds down, we are amazed at how much Miles has learned and developed over the summer. During our annual meeting with First Steps this morning, Carrie and I went over all the developmental areas that Miles is getting therapeutic help on via the program and talked a lot about progress. From eating on his own more indepentently, to painting/drawing well on his own to quickly picking up sign language, there is a whole lot to be hopeful about as Miles heads towards his 3rd Birthday and the end of services with First Steps. His interest in toys, concentration level and overall excellence in thereapy and living lately has been very cool to witness. The only thing we are waiting for is his language to begin. In small, precise steps, Miles is mouthing sounds and matching them with other sounds. Again, it's a very slow, methodical process that is leading to amazing results. I pause frequently and realize that all of these little monumental leaps are just 'growth' for a majority of the kids in the world, but this is something that is amazing for us. Toys and things from 6 months to a year ago are finally being recognized by Miles. It's quite cool and reassures me that we grow up too fast in this life. So, my silver lining is that he will have more time to soak in the simplicity and goodness in this life. Without a choice, we can make other choices.