Sunday, March 20, 2011

Intake Assessment (and a General Update)

I met with a psychologist from the Autism Center at Children's Hospital for an "intake assessment," which apparently was just me talking with her, going over all the information about his current treatments and evaluations while he played with their toys and made a mess (and towards the end of the meeting, escaped out the door and down the hall).

The gist of this meeting is, the next step in Joseph's treatment is to get an Early Intensive Behavior Intervention (EIBI) program started (which for the sake of simplicity, I will henceforth refer to inaccurately as ABA). This will probably involve about 20 hours of one-on-one work with trained ABA aides after school. My niece is going to be one of the aides, but the doctor said we need to have at least one more aide from outside the home, so that Joseph doesn't think that Celia is the only person he needs to "work" for.

Once we find a second aide, they, Celia, and Kristy will attend a three part aide training program in May (offered every 2 months) and a doctor from the Autism Center will come out to observe Joseph and put together his treatment plan and train us and the aides on how to implement it.

We apparently can use a program called HealthChek to have Medicaid pay for the aides even, so we should be able to do all this with little or no out-of-pocket expense.

The iPad continues to be an invaluable tool. Joseph is playing games that help develop fine motor and language skills. Until we get the ABA program going, I think we will probably have Celia sit in on some of Joseph's speech therapy sessions so she can work with him at our home on his speech. I expect that the iPad will also be very helpful as a formal part of Joseph's ABA program, since it can be both a learning tool and a reward at the same time.

We're also preparing to shuffle bedrooms so that Maria and the new baby (coming in August) will have a bedroom and Joseph will have his own room. When we do that, we should be able to get a small table and chairs that can be stored in his closet and brought out then it's time to do work at home. There are too many distractions everywhere else in our home to expect him to be able to focus. Plus, Maria will be able to have STUFF in her room, which will be nice for her.

Spring break is this week. Celia is going to spend the week here to help out, but pray for my sanity anyway. :) We're going to COSI and do all kinds of cool stuff, hopefully. As well as do spring cleaning and move the bedrooms.

Oh, and Joseph is taking a break for Occupational Therapy, which will resume in 6 weeks or so. I talked to his OT and in the next session we're going to try Therapeutic Listening, which I've heard great things about from a couple other parents.

Gary at A4CWSN who gave Joseph his iPad wants to give iPads to other kids with Autism Spectrum Disorders. Please consider making a donation to this project to help other kids the way Joseph has been helped. Also, he's still taking applications for other families to receive iPads, so it wouldn't hurt to add your name to the list!

Thursday, March 10, 2011

An Incredible and Unexpected Gift

Yesterday, the UPS man brought a special gift for Joseph.

Since we got Joseph his iPod Touch, one of my new favorite websites has become A4CWSN (Apps for Children With Special Needs). I mentioned the site previously in my most recent post about Joseph and his iPod. Gary James records comprehensive video reviews of all the apps listed on his site, which is wonderful because it can be hard to determine if an app will suit your needs from the description alone and there are so many apps to choose from in the iTunes app store that it can be hard to find the good ones. Gary himself is the father of five children, two of whom are autistic.

Gary read about how much we appreciated his website, and that Joseph had only an iPod Touch and not an iPad yet. He offered to help us get an iPad for Joseph, and a week later UPS was delivering one.

I cannot express how grateful we all are to Gary for this generous and unexpected gift. Joseph loves it, and wouldn't put it down for hours after I loaded his apps on it. I couldn't even get him to let me touch it.  :) Joseph's speech therapist is already researching how she can integrate the iPad into Joseph's therapy and I expect it will be a great help to Joseph.

Please subscribe to Gary's blog, Apps 4 Children With Special Needs, follow him on Twitter and 'like' him on Facebook. He wants to help more kids like Joseph get access to this technology.

Wednesday, March 2, 2011

What Defines Me (A Discussion About Labels)

In sociology, people are defined by 'statuses'. Statuses can be achieved or ascribed. Achieved statuses are a result of the person's own choices while ascribed statuses are involuntary.

My achieved statuses would include:

  • Photographer
  • Father
  • Husband
  • Guy who likes Reggae music
My ascribed statuses include:

  • Man
  • Caucasian
  • Son
  • Brother
  • Guy with a red beard
  • Father of a Child with Autism
Everyone has a 'Master Status' which they choose, either consciously or not. Their master status can be either ascribed or achieved, it's simply the single status that they feel defines them the most for whatever reason and it defines how they present themselves to others.

Whether we like it or not, my son holds the ascribed status of Autistic. I'm sure that we can agree, that status should not be his master status, defining him and consequently limiting what he can expect to achieve in his life. Since we all agree, that's why this post isn't about that. This post is about MY master status.

I spent about eight months last year, leading up to Joseph's diagnosis, mostly quietly, reading articles, watching videos and learning about autism. Once we got his diagnosis in August, it grew to consume a large part of my life. "Father of a child with Autism" became my master status, an ascribed one, probably because it's the one that I felt (and still often feel) least suited to handle, it's certainly the one that challenges me the most. Maybe because it lets me know that I'm not just a dad who has a hard time "handling" his kid.

So I don't want my son's master status to be "Autistic" and I don't want my daughter's master status to be "Sister of Autistic Guy," so can "Father of a child with Autism" be my own master status? Does that, by extension, make his master status in my eyes "Autistic"? Is there something wrong with that? For my sake, for my son's?