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 ..