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.
Thursday, August 23, 2007
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.
Wednesday, August 15, 2007
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.
Monday, August 6, 2007
Every week or so Miles picks up a new favorite thing to do. For several weeks now, Miles has really been into the arts and craft making. He's consistently run for excitement to the blank paper and eagerly sat down at his table to do some work. He completely gets giddy excited and makes some impressive works of art. I especially like to see how the natural run off of environmental effects are infusing little Milo into some cool creative ways. I'm keeping my fingers crossed that this is not some temporal fad and that he can garner as much enjoyment from the world of the arts as his mom and I have. Click here to see some of his work ..
Friday, August 3, 2007
We have arrived at August and are finally looking back at one of the busiest months of our lives. Moving from one house to another, along with a week-long Florida vacation, took it's toll, but ultimately made things so much better. Little Milo had a hard time during the month getting settled into anything familiar with the packing, vacationing and constant moving. Now, he has his own room, own therapy space and a new place to call home. All of us now have our own space to spread out in. I really notice the change in Miles' attitude and behaviors now that he can meander, spread out and have his own defined spaces. Now that we are in Belton, we are looking forward to the new Special Ed. program and will meet with their coordinator soon. As we exhale, thanks to everyone who helped us relocate our lives into a home and environment that we were striving for since April 2006.