Favorites & Forgotten

I always get fascinated with the things that Miles will clutch and love over brief spates of time. These are objects pulsing tightly in his grip that if taken away, the walls will quiver with loud defying cries. This morning, he had the DVD remote from our bedroom in one hand and a tiny green new testament Bible in the other. As he clutched those while I was readying him for a new day at clinic, I knew I wasn't going to safely get these items from his grasp. So, as usually is the case of having to give in to possible tantrums, I let him clutch these unique little items in his content hands. While I watched his tiny fingers roll over these items, I was imagining him hitting the rewind button towards the open face of the bible so that I can find deep theological answers to the mystery of his condition and this life. So, instead of sweating the small stuff, I wrapped my imagination around a hugely cool notion of how our special son falls in love each day with something new. And in turn, we all fall in love with little Miles boy each new day in return. There really are times when it all makes sense in a perfect box of sanity .. if you let it be that way.

The Pain of Speaking

It always fascinates me to watch the process of Miles trying to speak and to really inspect how the process affects his mind. When I see him struggle, drool and attempt to pull a therapist's hair, I have to escape into his world to feel what he is acting out. The mere brain process for him to attempt sounds is extraordinarily difficult. He gets to the point at times where he frantically pulls at his arms in the 'stop' or 'i'm done' mode so that we stop asking him to hurt his brain. Usually I cave in and let the poor little guy pant for a minute, but once we get back at it I see that it's beyond a mere nuisance for Miles. As a person that likes to communicate and one fascinated with the entire human communication spectrum, I am both astonished and saddened to see how a small human that happens to be my son is getting it. As we near the end of speech therapy in the home, Carrie and I want to thank Emily and all the other therapists for their unflinching dedication to our small Miles boy. I admire them and respect the hell out of my little boy for trying so hard all the time and making such leaps. We are hoping that one day he will speak to us, speak to you and speak to this world of ours. For now, the sounds of 'da-da' blasting across some retail store as I try to find him and Carrie gives me goose bumps. I love his voice and some day the world will as well. Good boy, Miles.

The CO-OP and Expectations

The first is that I have been wondering a lot about a home-schooling Co-Op. I am not at all adverse to the public school system but I am sure that I will be in just a few years…I am optimistic about it but really honesty do I even expect the public school system ie the government to teach my “gifted” child?. Hardly...Most days I feel like the less the gov does for me the better…So yeah, I’m going to give it a try…but I am not holding my breath. And being a long term thinker I figured that to home school say 5 kids it would require a half day commitment from each parent (mother and father, or an aunt or uncle or cousin…just two figures from each family) which is not that bad at all. I could figure the pedagogy and laws out fairly easily (ha) and we could be on our way to getting our kids taught exactly the way we want…Anyone out there interested or with any useful info PLEASE send it to me cause I think I might be pretty serious. BTW I am getting ready to add a section called…what to expect when everything turns out to not be what you were expecting…I am going to start writing about every single thing that has gone differently than we expected since Miles was born…From the difficulty of feeding as an infant, through the diagnosis process to starting Early Childhood ED…I’m going to discuss how to negotiate FirstSteps or whatever early intervention program is in your area and basically how to become an advocate for your child….I feel like if I had read about all these things before they happened I would have handled them better or at least I would have know what to expect!!!

The Reality of a Special Needs Child

I finally caved in and wrapped my mind around the notion of getting a dog for the family. On Friday, Carrie had forwarded me a message of the EFFECT Listserve (Lee's Summit Organization of Parents that have Children with Disabilities) from a woman in Independence that had two Jack Russell Terriers they needed to get rid of. After calling the number, a woman explained that she had a 3-year old son with Autism and that these were great dogs. They were crate trained and used to going outside. They were born in August and completely loved kids. So, Carrie and I decided to make the big leap on Sunday and get a new pup. After we came home and let the new dog roam, we started realizing how much attention it needed. From constanting messing up the carpet with poo/pee, and chewing much up, we started feeling like we had a new child in the autism spectrum. And both of us were secretly exhausted and scared by the end of the night. Thankfully, we put out a disclaimer before picking up the dog (we called her 'bella') that we might need to return her. As Monday went forward, we both realized how much work this Jack Russell was going to require and how much time we didin't have to do it. So, to save the sanity of our household and new pooch, we decided to return the dog. The owner was quite gracious and completely understood our situation. Miles and I returned the dog in that cold grocery store parking lot and silently went on with our lives. As I looked into the rear view mirror, I told Miles how much I loved him and that we would try it again later on in life. As he nodded his head in rapid succession, I was happy to have my one delightful autism spectrum child to nurture as we headed home to our quietly hectic reality.

Jo the Amazing Cleaning Lady

I know I have mentioned this to several people but I feel like writing about it because it is so amazing. My Mom, for my birthday, gave me her cleaning lady once a month for 8 hours…This sounds so…I don’t even know what this sounds like to you the reader… fill in the blank…For me it is like a miracle because you are about to understand CLEANING WITH MILES.

It happens either on Friday morning or Wed morning. The only two mornings we don’t have therapy. I allow my self an extra cup of coffee just to make it bearable. I give him a sponge and a paper towel and a squirt bottle filled with water. I run the water into the sink so I can mop the floor. Miles is vacuuming…He won’t allow me this task which means that the floor always looks like it needs to be vacummed…but he gets so much joy, ya know? I’m mopping away and of course he runs into the kitchen to show me his baby dolls cap which is NOT on her head…Slips on the floor slides into the porch door and has a boo-boo for the rest of the day (boo-boos are another story altogether). We get the “pig” out, a gel filled cold pack that looks, you guessed it, like a pig. And put it on his head for like 12 seconds and he is all better. I fold laundry and he plucks it off the bed and puts it into the dirty laundry basket. What A Good Helper!!! When I am not looking he plucks it into the toilet because the toilet contains water and that is where you clean things…He uses his spray bottle to “clean the windows” and then decides the water dripping down the window needs some substance so he smashes a pretzel into it and it is so much better…Basically, he runs around undoing everything I have done and thinks it is the best thing in the world…Since I am quite attached to a clean house I can’t tell you how much I love Mom and cleaning Lady Jo, who comes when Miles is at the autism clinic once a month…And such a nice woman she is that when she gets here and sees the filth of my house and all the little contributions Miles makes she just humms and clucks to herself, cleaning in peace and quite…Not something I thought I’d ever miss…but there it is…If you ever have the opportunity or means…give the gift of CLEAN.

The Halloween Surprise

In preparation for Halloween this year, we decided to let our 9-year old, Zen, go on with another friend to do his trick or treating. It was our preventative maintenance against having a difficult time with Miles. Leading up to the big kid candy day, Miles didn’t want to wear his lion outfit and got crazy at Zen’s school during their mock version of Halloween. So, to save Zen’s holiday, we decided to corral Miles with minimal house hopping and hanging at the homestead. This Halloween, we were pleasantly surprised by the obedience and fervor that Miles had for his costume and house visits. At many houses, there were plenty of ‘ooooh’s / aaaah’s’ and camera’s snapping a photo of Miles. He was completely cool about his costume. It remained on without any fits or meltdowns. When we would go to houses and enter some, he would be attentive and listen to our directives. Back at home, he was calmly handing out candy to all the kids that came by the house. Overall, our fears were not misplaced, but it was one of those rare occasions that we were wrong on all fronts in anticipation of Miles and his behavior. As a way of thanking little Milo, we let him fill his small body full of candy that night. Both Carrie and I were blown away by how well Miles had done and were equally filled with that kids spirit of a holiday celebrating the coolness of kids.