First Full Week of Pre-School

Miles had a tremendous first week at his new school - Grace. Each day I picked him up, I heard a rather encouraging assessment of his first foray into education and amalgamation into a group dynamic. His only drawback, at this point, is that he has isolated cases of pulling another kid's hair. Other than that, he is getting engaged in activities, making new friends and blooming under the fruits of a solid program and IEP. We are beyond words 'glad' that he is transitioning so well and feeling comfortable in his big, first step towards being a soaring little kid.

The First Day of Pre-School

The enormous drum roll into our first 'educational' environment finally arrived yesterday. Carrie, Zen and I escorted our Miles boy into his first classroom-style environment and it was quite an emotional day. Essentially, it was the reason why we moved to Belton and we had just survived an enormous fast track to getting his IEP complete. We were very comfortable with his IEP and quite amazed at the efficiency and graciousness of the Belton Early Childhood Staff. So, once Miles was taken towards his first school activity and we said our good-bye's, he bellowed quite loudly. It was hard to leave that room and I have many more emotions than I thought I would. All morning I looked at the clock to see when I could pick up our little boy and find out how his day went. The report was sparkling. He was completely in control and really embraced his new envirnoment. So, the official end of our foray into First Steps is done and Miles now has a backpack full of school papers. In all it's surreal glory, we are watching our 'baby' slip on into the next phase of his life and it's quite amazing. Finally, I just want to note how proud we all are our Miles boy and how hard he works at everything.

Holiday Party Irony & Sensitivity

This last Saturday, the family loaded up into the car to partake in the annual EFFECT holiday party. This is the organization out of Lee's Summit that is a champion for youths with disabilities, including the Autism Spectrum. Carrie spends a lot of time culling through listserve e-mails to garner solid research and advice from a community of advocates. At any rate, we wanted to get welcomed into the community via flesh versus solely email communication and went on over. As we walked in, a huge array of sights and sounds assailed Miles boy. From the Disney Radio dance floor to a creepy cow mascot with bright pink foam lips, Miles was rather spooked by the overload of 'fun and lights' whirling around. He just couldn't settle into a comfort zone that would allow him and ultimately us to ease into the mix. He was rather civil in a Santa pose, he loved the water droplet mascot running around and did tackle a couple of cookies. Overall, it was way too much for an event that should technically have been enough. This also reminds me of how the double-edged sword can rise over and over with a child like Miles that has sensory issues. Case in point .. at night after being away from him and wanting to just hear him laugh, I'll get him going so hard that he will likely puke. So, even in my desire to have a minute of mad laughter, I have to pull back because it might backfire in a nasty expulsion of accidental glee. At any rate, Carrie and I were happy to go to an EFFECT even and would love to foster more of an existence with like minded couples or a play group. Anything and everything is helpful when you already feel alone in the world of the 'spectrum'.

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.

Listserve Spies

Okay so last week on the listserve I belong to…Someone posted with a bunch of questions about IEPs and Safe chairs and safe spaces and BIST and all these things that when I read about them I start to feel sick…I haven’t had to deal with any of those things yet but I know it is coming and soon. So I am reading about this poor woman and her apparent feeling of helplessness and confusions and anxiety and fear all together and I am thinking WOW, this listserve is a great place…She is going to get a lot of response and a lot of help and people who know what to do out there are going to support her…and me when I need them…What was the response? The response was from a woman who simply stated…This listerve is not confidential…there are representatives from various school districts who routinely get on this site, copy your e-mail if they contain complaints about the district and share them with the various district boards…Directly following that response was another person saying, yes, its true…It happened to me in my district., one of the board members referenced one of my e-mail during a meeting.
I just don’t even know if I can sufficiently express my shock and disgust. Spies! School District Spies on a pathetic little listserve where people go to self educate themselves about their kids special needs, about services supposed to be proved by the state to help them learn effectively…It would be funny if it weren’t so sick….These have to be the same people who voted for G. Bush not once but twice…I swore never to discuss politics in this blog or religion since it has a tendency to ostracize a portion of the population but it is the most effective metaphor I can think of and I don’t really know if anyone reads this anyway so I’ll use whatever metaphors I want from now on!!! In any case…nothing is sacred anymore I swear…To make this blog easier to swallow…the woman who initially posted with her questions replied that she didn’t give a damn who read her post and that they could feel free to quote her e-mail at any meeting any time…that she is the only advocate her child has and she won’t be bullied by LISTSERVE SPIES! Good for her…

Conversations

When you are talking to me on the phone this is what is happening to me:
Miles hears the phone ring. Runs with utter delight to the trashcan and dumps it over…If I actually answer the phone he heads up the stairs to the game room where he proceeds to dump all the Uno cards, checkers and dice that he can find over the balcony into the ceiling fan. At this point I am still trying to focus on the question you are asking me or the description you are wanting a comment on….These are serious conversations…Friends needing advice on relationships, jobs or just wanting to vent. Parents with serious health problems or needing help with rides to the hospital or grocery shopping. These are things I need to think about… focus on… and I am running, literally around the house trying to prevent my child from flushing his baby doll down the toilet or running out an accidentally left open front or back or garage door. People know not to call me unless it is serious. They know I will call them for idle chatter when I am on the road or the baby is away with Daddy…. I gauge the seriousness of the phone call…pretzels, marshmallows, red hots or pepperoni? Perhaps a bowl of pickles or a lemon to chew on? I give him a bit of each watch his face alight from hotter than crap to sugarcity…AND I HEAR WHAT YOU ARE SAYING FOR LIKE 5 SECONDS…and it is wonderful….Then the food is scattered and the table overturned and before I even blink he is up the stairs to the bathroom to wash his hands…Which always involves lots of water on the floor and a burned finger or two…Mind you this entire conversation and all activities have been accompanied by either whimpering, whining, wailing or some unbelieving annoying chanting…That is usually DADADADADADADADADADADADADAD and of course he is at work…and when I, Oh, so, silently utter the words “Daddy” and “Work” together it is like his world has ended…the utter despair and, I am not kidding, the anguish, on his face is so heartbreaking that I just have to get off the phone and snuggle him up in my arms and tell him Daddy will be home soon and I am all his for the rest of the day. Please… always…all of my eternal utter remors for the failed phone conversations of late…Remember how much I love e-mail and also please don’t stop calling me it makes me feel human and loved…

Imitation Stage

A new and intriguing string of behavior has recently appeared in Miles. He is starting to imitate ailments that have hit Carrie and I. His first foray into sympathy pain was several weeks ago when Carrie sprained her ankle. After her ankle had been wrapped and the healing was starting to really begin, we had a night away at a hotel while Miles and Zen were being watched by the grandmas. The next day, we noticed that Miles was limping around. It wasn't a slight limp, it was rather profound. We didn't know where to start. Since he can't speak and has a hard time letting us know what has happened, we were at a loss. After his nap, the limp went away and his cover was blown. Yesterday, the same kind of thing happened. I cut my finger pretty badly on a steel lid and had to run off for a band-aid. After coming back, Miles was frantically waving the same finger on his hand. He wouldn't stop until we got a band-aid to seal up his imaginary wound. It's quite intriguing to see your little one imitating your injury to be a part of what you are going through. This is just another unique mix known as Miles as he continues to fascinate me daily with his intrigue.

My Fear Exposed Nationally on CNN

I saw one of the saddest headlines on CNN this week. Apparently, some 10-year old kid with Autism was beat up by a group of kids while getting off the bus and another kid video taped the whole thing. When I watched this boy's Aunt, his legal guardian, talking to reporters, she wouldn't even show her face. There was nothing but her shuffling feet and quivering voice over the video roll of the location where this incident happened. I didn't want to watch the segment, but thought I would peek into how badly segments of our society has devolved. This is my biggest fear about my Miles boy. The cruelty of kids, misunderstanding of adults and the general nadir of pockets of our society make me want to keep Miles at home all the time. All kids need to be protected and this poor kid, along with all kids with any mental/physical limitations, need to be protected by us all. And the parents of these kids that committed this horrible act of brutality need to go to an Autism clinic for one full day to absorb the imagery of what their kids cannot comprehend. Then, they could pass it on to their young ones that feel they are mightier than someone else with a mental impairment that is already enough to deal with each and everyday. I'm scared of America sometimes and when I see stories like this I'm afraid of many people and their collective inability to show civility no matter what is deemed normal or abnormal.

Coping with Grown Men & Autism

I know I've talked about this before, but I have to delve into the way that I view men dealing with the Autism Spectrum and children in general. It was all tipped off last week when I read the Jenny McCarthy article about her son that has autism. It was a rather insightful article. As it wound to an end, Jenny said towards the end that 'there needs to be a special place in heaven for mother's with autistic kids.' Again, it was with this comment that I feel marginalized by the male race around me. I have consistently made a strong committment not only to therapy, treatment, but to raising my son by spending plenty of quality time with him. I have done this since day one and will continue to do this until the end of my life. But, it's usually viewed as the woman's burden in particular to take care of a child with a disability. Case in point, when I drop Miles off at the ABC Clinic or the times I have spent hours with him during therapy, I never see men. It's always a collection of women that come through the doors to drop off or pick up their kids. And this article about Jenny talked about how the father of her son couldn't hack it and was asked to move out. Furthermore, it went on about how he couldn't get over the fact that she was preoccupied with sex. It's this kind of stuff that is going to consistently view men as father figures in a very weak light. Until there is a more unified waking up of men across all fronts of the parenting horizon, it's going to be viewed as a woman's job to parent. That's rubbish and it chaps my hide that men put so little into the entirety of raising children, especially those with disabilities. Having a child in the autism spectrum should never be something shouldered by one parent .. that's just not cool or right. It's a shared responsibility that requires love to tackle the ills of a mental disorder that takes brain power to heal. More than anything else, I'm delighted that I'm such a huge part of my son's life and see myself as a 'parent' versus being a 'male'. I don't like what the majority of men do these days. The stereotype of a man as a sports addled beer drinker reverted back to Leave it to Beaver days is exactly what happens all too often. At any rate, that's my thought on the matter and Jenny might want to consider that there's a place for everyone that has to heal a child with autism.

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.

Painting Ways

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 ..

Surviving July

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.

Moving Looks

It has been slow going on the blog front due to an inordinately busy July, but I do have something I wanted to note in here about Miles. Lately, he has been acting out quite a bit due to all the changes with our new move. He's been prone to dumping things and throwing things around more. But, I have also been noticing the wheels of comprehension taking hold. Whenever give him a small talk about what he is or isn't doing, his eyes dart intently towards the northwest of his brain and he ponders carefully. Usually it sinks in and things get better for a while, but it has really been recently that I have seen that northwest glance and a real attention to communication detail. Another triumph of the therapy process as the wheels of understanding spin wildly in Miles' brain.

Constant Miles Reflection

We are constantly reminded of where Miles is, how far he has come and how much work he has to do to catch up to the ‘proverbial’ curve. The other day, Carrie and I met with the Hickman School District to discuss early childhood possibilities for Miles. As the case has been lately, once we get our names out of the way, we delve into a huge list of questions. As we answer, both of us are churning hard to remember what he is doing and how he is progressing. On the one hand, I walk away from these meetings completely regenerated that Miles is making progress and that there are solid programs in the world to aid a little guy like him that needs the help. On the other hand, it’s an exhausting activity to recant his entire existence as though we are reading a doc’s chart while we prepare for the next procedure. Sometimes I blankly dart around the room and wonder what it would be like to just watch a child develop without the battery of therapists, diagnoses and recommendations for acquiring services. It doesn’t last long, and I don’t buy the ‘regular’ route with children anymore. More than anything, I’m completely enamoured with the coolness of our Miles boy. Finally, I walk away marveling at how much love Miles gets from those within and on the boundaries of his life and how much that will benefit him later in life. Perspective .. it’s truly all about perspective ..

No Talking Communication

The oddest thing about this autism spectrum is that Miles is nearly 2 1/2 Years old and he cannot look at me and say 'dad' or look at Carrie and say 'mom'. Overall, we are struggling to get him to mouth sounds to aid him in talking at some point. There are several things that collide through my brain when I think about this. First, I used to muse in the beginning of Miles' life that the first thing he would likely do is talk because that's all we do in this house. Secondly, I am putting my college degree major, communication studies, to the test in understanding the path we take as humans to communicate with each other. I have often said that 70 percent of our communication behaviors are non-verbal. Thus, I usually know what Miles is saying or feeling without him saying a word. Again, this is one of those scenarios that is hard to fully absorb when I hear friends and read articles that have kids at 1 or 1 1/2 speaking proficiently with a varied vocabulary. Many times a day I watch Miles frentically sign and wonder what his small kid voice will sound like when he begins talking. Furthermore, I can't wait for him to banter, dawdle and annoy me with his plentitude of words that I dream about like a far distant retirement that I hope I see sooner than later.

Part of a Newly Emerging Group

During our last transition meeting in December of 2006, all of our therapists and case managers were at our house on a very cold and snowy day. As we discussed Miles' IEP and progress, I noticed a cop out front beginning to give all 5 cars on the side of the road tickets. I quickly ran out to the cop car and explained that Miles' therapists were discussing his future. At this, he stoped and said that his daughter had sensory integration issues and he would wave the tickets. From there, we had a spirited talk about therapy. About 3 weeks ago, a couple came by to get a toy we were throwing away. They were on our curb asking us about this toy and mentioned that they were getting it for a neice that was in the autism spectrum. From there, a spirited discussion ensued about the conditions surrounding autism. In between these two random encounters, there have been others that indicate a growing bubble of new children in this country that have autism or exist in that bubble. There is something about this that comforts me in that fact that there will likely be more research, clinics, funding and support groups to help all of us trying to cope with something as big as the autism spectrum. More than that, I'm starting to feel like I'm a part of an ever expanding global villiage that is fighting to tame an unknown disease. I like the strength in numbers and it keeps growing and giving me more confidence that we will find cures and better therapeutic means to deal with the autism epidemic in this country.

Special Needs

So, we had the flu this weekend. It went like this: Miles signs for food. Miles pukes. Smiles. Signs for food. Cries because we won’t give him any. Fifteen more signs for food. Give in. Puke. Cries. Smiles. Pukes. Signs for food. Signs Tired. Pukes once more for good measure. Sleeps. Wakes. Signs “food” and kisses my elbow. Puke. Miles tickled pink laughing so hard because now I am puking and he thinks it’s the funniest thing in the world that I am making that sound over the toilet.

Joe comes home from a TV interview and asks, “How did I do?” I reply, “You looked” …puke … “beautiful” … puke. Me yelling at Miles to STOP crying for just a minute because I feel sick! Joe yelling at me to stop yelling at the poor sick baby .. Joe yelling at the baby to STOP crying so he can yell at me to stop yelling…What kind of mother am I??? Puke…Yell at Joe for not being sick…sleep. It was just your basic flu.

After I felt better, I started thinking about how a lot of this crazy life it obviously just being a Mom. I was thinking that I have a toddler (I’m going to stop calling him THE BABY) who has special needs, but I also have a 9-year-old with special needs because ALL kids have special needs? Zen, the one we call, THE OLDER BOY, is intensely smart. He needs constant challenges otherwise he spends all of his time playing video games or helping other people. He told me last week that he couldn’t decide if he wanted to go to the clinic with Miles or go take care of his ill grandfather? Which should he do? Could he do both? I asked him if he wouldn’t rather go to a summer camp for baseball or swim or something and he said he was too busy helping Miles learn new signs and that his gramps needed him. At first it just broke my heart that our lives seem to revolve around Miles and that I wish I had more time to learn with him about the math he loves or read him books…I think often how Miles’ needs will effect Zen and I worry and worry about it all.

My mother, the amazing Judy, covers therapy on Monday afternoons now so Zen and I can have three hours to go explore the world. So far all we have done is go see movies, which might sound like a horrid waste of precious time…But since we haven’t been to a movie together in over a year, it is simply delightful to hang for a few hours in a cool movie theater and not think about anything but pirates and penguins for a few hours with the other kid I have who has “special needs.”

48 Hour Blog

DAY ONE

So, I had a mini breakdown last week. More of a crying jag than anything else. I just couldn’t understand why I wasn’t handling all the therapy, all the tantrums, the lack of sleep or the inability to get anything done ever … better.

Why is it so hard, so tiring, so draining? I kept thinking about all these pretty, glowing and happy mom’s I see everywhere and I just couldn’t figure out why I felt so weak. Why it is all so hard for me, why I feel so bitter and so angry. Thankfully, finally I realized it IS hard, it IS exhausting, it IS depressing and I have every right to be overwhelmed. It made me feel a lot better to realize that I am only human in so many ways. This got me thinking, as I have often, that having a child with special needs is in so many ways like loss, or waking up and realizing you are paralyzed or blind. I know, it sounds horrible, but it’s like the death of expectation or the death of life as you knew it before. It alters every dream you ever had…it changes the relationships you have with every person you know from your husband to your parents to your other children. It changes how you do your job, your faith and everything.

The key to all of it is to not get stuck right there. It feels like a powerful whirlpool and it can be devastating. The key is to make new dreams, set new goals, get a new job, let everyone around you know how much you love them, but that you just might not be there for them as much. It is actually kind of cool when you really think about. All this thought led me to thinking about paraplegics, that guy who cut his arm off to save his life, people who live with cancer. There are so many heroic stories about people who thrive after trauma and people who choose to live better than they did before. I know that everything will get easier (ha! It better) and I know that I am unbelievably lucky to have such an amazing husband and supportive family and friends. I just worry about people who don’t and I wonder how they get through those difficult days. I am continually jealous of people who look at it all as a gift or a blessing and never question the path God has chosen for them. I am jealous of people who smile better than I and laugh more and find time to give back to the community. I guess when it all comes together at the end of the day, each of us handle this gift different.

So, my missive this week is to go ahead and cry. Some days just really suck and as silly as it sounds…do everything you can to make yourself better than you were before. It’s a lot better than sitting around being pissed off all the time.

DAY TWO

Did I mention that part of this whole emotional roller coaster is schizophrenia? One day you feel like everything is crap and the next day you feel guilty for feeling that way. You wonder what the big deal is. Therapy is not so bad and you feel enormously lucky to have such amazing therapists. They touch your life and the life of your family in amazing ways … every single day. Your child is beautiful and his laugh makes people giggle. Even people that frown all the time light up when Miles is near them. They reach out for him, they coo at him to see his smile and it is all amazing and so utterly beautiful that you feel inconsequential, like nothing in the face of the beauty that is your child.

Joe and I talk about how TV, movies and life, generally prepare you for pain. You are pretty sure you’ll live to see your parents die. The Lifetime network prepares women to be beaten by their husbands, schools them on criminal terminology, prepares them to be cheated on by their husbands and vise versa. In the back of our minds, we are all prepared to have a child who battles and overcomes cancer, or succumbs with untold bravery. But, it seems that nowhere are we prepared to deal with a child with special needs. I, more than most, am lucky in this regard, as my mother has worked with adults with different abilities in all ranges. So, at least I have a little bit of background. The point here is that I would imagine, with or without lifetime television, none of us are working from a script. So, we don’t even know how we are supposed to feel. Today, I feel like I have the most beautiful child in the universe and that is enough for me for today.

In conclusion, I firmly believe that Miles laughs much more than he cries and his inspired romp through this life is miraculous. Thus, I feel alive and vigorous by the strength and happiness that Miles carries on throughout his life. So, when he reaches over to give me a kiss at the end of the night with a huge, patent smile, I know that everything is worth it. Miles is amazing and his happiness erases all of those times of depression, trouble and doubt. That’s where I’m at.

A Man's Role in Parenting/Therapy

I recently got a comment on a therapy video via youtube.com that was congratulating me on being with Miles so much, especially because I’m a man. To compound this notion, I always notice people out in public, particularly women, that give me that look as though I’m some sort of an anomaly for being so available for my son. As appreciative as I am for the feedback, I’m more concerned about our society. How is it that men are lauded with such positions of authority in our culture, yet it’s a weird sight to see them with their children. Sure, I know about the variables that lead women to have more time in childrearing, but I have made a very clear and conscious decision to be available for Miles. I made him a top priority way before therapy and a diagnosis was on the horizon. It’s in my blood and I feel wholly dedicated to his life and therapy in ways the make me mourn a bit for the fact that many men in our society see it as a ‘woman’s’ job or simply something that is not a priority.

Brother Zen's First Podcast on Miles

we are very excited to post the first audio podcast interview with mile's brother, zen, and listen to what zen thinks about therapy .. this is a very candid interview and proves how good of a big brother zen is to little miles .. click here to listen and enjoy ..

Defining Therapy & Our Schedule

After reading a great article on ABA therapy on the EFFECT listserve, I decided to do some research into this type of therapy for Miles. I started by asking his ST, OT, and PT’s what they thought and from there I hit the books.

Everyone told me basically the same thing: It depends on the therapist you get. I hate the word behavior and it is one of my goals to come up with a better way to describe this therapy, since it basically addresses his ability to learn. Maybe it should be called learning behavior analysis instead of behavior therapy. In any case, we decided to give it a whirl and we love our new therapists. For all of those who want to know Miles’ new schedule, I am including it below. Also, I am also going to put in the list section all the new signs and skills that he is learning each week! Click here to access the list's page.

ST = Speech Therapy - OT = Occupational Therapy - ABA = Applied Behavior Analysis

Monday = OT: 9:45 - 10:45 / ABA In-Home: 3:00 - 5:00
Tuesday = ABA @ Autism Clinic: 9:00 - 11:00 / OT: 4:15 - 5:15
Wednesday = ST: 9:00 - 11:00 / ABA In-Home: 3:00 - 5:00
Thursday = ABA @ Autism Clinic: 9:00 - 11:00 / ST: 3:00 - 4:00
Friday = ALL DAY FUN

Sweet Miles Music Crossroad

I noticed during the clinical visit last week that Miles did not respond at all to the baby music they were playing with him. The idea was to make Miles dance, point and move about while listening to the music. I think I know why this is happening and it’s likely my fault. I have played Miles quality music from the time he was born. From the Beatles to the Dandy Warhols to John Coltrane to Royksopp. I have drenched this kid’s ears with so many quality tunes that the watered down tempo and melodies of kid’s music just don’t bring a reaction that he’s capable of when he does listen to good music. At the house, I have the iPod on shuffle and he dances, does arm waves and generally gets into the musical groove. On a final note, it has always been difficult for me to play children’s music with Miles. I own a whole lot of kid’s CD’s and have even tried them out, but it doesn’t work for me. If my kid is going to listen to music, it’s going to be top shelf. I may have to make a mixed CD for his future therapy visits. - Joe

Miles and the Mysterious, Marvelous Band-Aid

Last weeek Miles tripped and fell down the front porch. This is nothing new as he falls several times a day. He scraped his left hand hard enough to need a band-aid. I noticed that every time his hand hurt, because he picked up sand or got cold water on it, he held up his right hand for me to kiss. He did this even though it was really his left hand that was scraped. I tried to imagine how his brain sends a signal to the hand that it hurts and how he could interpret that it was his right hand and not his left hand. But, of course this boggled my mind as I am not an expert on brains. I remembered how one of his therapists stressed the importance of massaging both feet instead of just one and again I am at a loss and will need to do more research on this matter. In any case, at the end of the day we realized we’d have to put band-aids on both hands because his brain was telling him they both hurt. That is no fun at all! But maybe when he feels pleasure he feels it twice as much…Always a silver lining! - Carrie ..

Sensory Integration and Mother Advice

Sensory Integration Disorder, a.k.a. Sensory Integration Dysfunction (Sensory Processing Disorder), is defined as the inability of the brain to correctly process information brought in by the senses. Miles also deals with receptive aphasia (a language disorder), and ataxia (means he has reduced balance), an odd gait and poor motor skills. Our Miles still does not have a specific diagnosis other than SID, but believe it or not, there is a diagnosis for a non-diagnosis. This is called non-specific development delay or PPD, which is Pervasive Developmental Disorder.

We have been told that he may have Anglemen’s Syndrom or Isodicentric Chromosome 15 Syndrome. This is due to some extra DNA he carries on the long arm of the 15th chromosome! Whew, 2 years of doctor’s appointments, hours and hours of reading and research and it all comes down to this little paragraph. The purpose of this blog is not to look back, but to look forward and track the progress of Miles as he learns and grows. Also, this blog helps to keep things real for myself.

Coming very soon to this blog will be my list of lists. They will include the following: “Things to always have in your purse,” “Best restaurants to take your screaming kid who throws food at any table in a five foot radius,” “Best unlikely takeout,” “Necessary books,” “Horrible choices you have to make when realizing you have a child with special needs,” and “The wonderful list of things that are out of your control”. Please feel free to send us lists or add your own comments to our blog.

Winding Down Week One of New Therapy

we are getting to the end of our first full week with behavioral therapy .. it has been going quite well .. miles is much more tired than before, but he is making great strides .. today he is grasping the notion of signing 'water', 'cracker' and is mastering the sign for 'candy' .. his attention span and desire to play with other kids is quite intense and we hear this is a good sign .. today was my first visit to the ABC clinic and i fully absorbed the experience .. if i was ever confused as to how autism works in little people, i am well on my way to figuring out how this mysterious diagnosis rages through the human brain .. overall, miles was delightful today and i feel the slow ease of therapy weighing huge dividends for our miles boy .. one more note .. i completely applaud all the therapists that have dedicated their lives to making babies and kids ease into this reality much smoother than having nothing at all .. it's very cool to see them work .. finally, i have posted several videos on a new page - click here to access - these are video compilations of miles' therapy sessions .. i will take these on a regular basis .. also, i am going to post these on youtube.com to make them more accessible from this blog .. cheers, joe

Welcome to the Miles Therapy Blog

this blog has been created to chart the progress of our little 2-year old miles .. he is going through intense therapy over these summer months to get ready for special education pre-school .. he has been going through three types of therapy since August 2006 and has made incredible progress .. his initial load of therapy included physical, occupational and speech .. now, he has behavioral, speech and occupational .. we have therapy 5 days a week and will go to an Autism Center in Lenexa two times a week for behavioral therapy .. to that end, we will be posting pictures, videos and stories .. please feel free to provide feedback on this very crucial and important part of our lives .. 'we' are - joe, carrie, zen and miles dimino in south kansas city, missouri .. welcome ..