Thursday, June 11, 2009

Growing A Pair

One thing I have noticed about being a parent of a special needs child is that I need to grow a pair. A BIG Pair.

I am a Midwest girl, born and raised. They don’t call it “Minnesota Nice” for nothing; being aggressive, assertive, pushy, or fighting for your rights is generally frowned upon. Being ‘nice’ is important. If you can’t say something NICE…you know the drill. Of course, what this inevitably leads to is a passive-aggressive style of conflict resolution, coupled with a lot of internalized resentment and bitterness. But damn it… We are NICE!

So, needless to say, I have always had issues with confrontation and conflict. I don’t want hurt feelings. I don’t want people mad at me. Luckily, grad school taught me the fine art of persuasion. If you can’t confront, manipulate! Make them think it was their idea! Act stupid, like you didn’t quite understand what they were talking about, but hey, did they mean THIS?? Blah blah… I am a genius at that. I mean, really good.

But for the J-Man… and our family… I need to learn to be a little less nice and grow a pair. My hubby (raised in California and Texas) has a huge pair. In Good Cop/Bad Cop terms, he can be a seriously BAD Cop. However, one does not set loose his pair out into the world uncontrolled.

Therefore, lest there be crying and restraint orders issued, I need to cultivate my own pair.

Therein lies my latest quest.

Three days ago our therapy clinic issued their new attendance policy. Without transcribing the whole document, here is the basic gist of it:

1. We are not allowed to cancel an appointment. Ever. If we cannot make an appointment, we must reschedule the appointment within 30 days or pay a $30 ‘fee’.

2. When we reschedule we will not be guaranteed our usual therapists or times in which we are available.

3. There are no pre-scheduled absences allowed.

4. If our therapist is gone (sick or on vacation) they can cancel the session but we must reschedule or face a $30 fee.

For some reason, this made me livid. Not just annoyed, ticked off, frustrated, and agitated. LIVID. I can’t explain the reason behind the depth of my response, just that this policy seemed so grossly unreasonable and we already have enough unreasonableness in our lives. So, here is my response (via email):

My husband and I have a few concerns over the new attendance policy that has been implemented by Family Speech as of June 15.

It seems to us that this policy has been established to guarantee revenue without any regard to the complexities of the lives of the families you are serving. As a parent of a delayed toddler, I have been involved in every element of Jonathan's therapy. I have attended every therapy session personally since we started therapy at St David's when he was 16 months old. Additionally, we have the school district EI services in our home two days a week. During the school year I also attend an ECFE class with him once a week for socialization. This has meant that for the past year we have participated in some type of therapy 5 days a week. Additionally, I work at Children's hospital as a RN in the evenings, and my husband works at Wells Fargo. We have rarely had to cancel a session, and usually those sessions involved some other appointment (for example, MRI-EEG at Gillette, meetings with the developmental pedi at Children’s, etc) or being ill. In that year we also took one week off therapy to visit the grandparents out of state. Nevertheless, our lives are pretty much consumed with therapy.

However, the policy you set forth would require that we attempt to reschedule those occasional missed appointments. It makes no allowance for advanced, pre-planned time away (vacations, hospitalizations, etc). It would require that my son... who is only 2... be able to have therapy with a complete stranger.... a session that I doubt would be very therapeutic at all! It requires that our family... with all of the constraints on both our time and energy... try and fit in yet another time, another appointment.

I don't find this policy to be very family friendly at all. I believe it unfairly puts the burden on us, the consumers, to accommodate your needs without taking into account our needs. I recognize that you must maintain some stability with your scheduling and your revenue stream. I also recognize that missing appointments interferes with the goals set forth for the child. But I very much feel that the occasional missed appointment or a family vacation should not be penalized. Indeed, sometimes a little "therapy break" can be good for all concerned.

We would like you to reconsider your new policy with respect to these issues and interject both an allowance for a set number of missed appointments a year (possibly 3-5), and/or an allowance for pre-scheduled vacation times. We would be happy to address these concerns with you personally or via phone. I attend every ST/OT session, so you would be welcome to come discuss this with me at that time as well.

Probably not very ballsy, but it is the best I could do.

Sometimes I just wish I could say “BITE ME”. And mean it.


Wednesday, June 3, 2009

The Game of Perfection

This is the Game of Perfection. You might remember it from childhood. The object of the game is to push down the blue platform (empty of all shape pieces), turn on the timer, and place all twenty-five tiny shapes in their places before the timer does off and throws all the shapes out.

Jonathan has this ability to amaze me.

During therapy today, this game was in the OT gym, a leftover from another child's therapy. The moment we walked in Jonathan saw the game on the floor and wanted to look at it. Our OT took the game out... sans tiny pieces... and let Jonathan explore it. He played with the timer, the buttons, and examined the shape-holes. But he knew something was missing... those tiny little yellow shapes! And he would not be diverted. Our OT (with my blessing) gave in and let him play with the tiny yellow pieces. We were on Defcon Five "mouth alert"!

Not one piece hit his mouth. Instead, they hit the shape-holes! Jonathan quickly examined the pieces, scanned the board, found the right place, and managed... with his tiny fingers... to get each shape into the correct place. He did it over and over... probably half the board.... before he had enough and wanted to move on to some other fun activity.

Meanwhile, the OT and I were nearly peeing ourselves. He is TWO! The fine motor skills and visual ability to do this task .... AMAZING. It is quite clear that whatever delays Jonathan has, this is NOT one of them. We had another OT in the room coming over to watch, all of our jaws on the floor.

Jonathan is teaching me to not underestimate him. Message received, J-Man!


Tuesday, June 2, 2009


We have had a big step! Finally, after months and months of working on this, Jonathan will finally sign "More". Our first SIGN!!! Of course, it is a very loose approximation of "More", but I'll take it!!! He is generalizing it to "anything I want to ask for", but it is a starting point. He has also been saying more sounds and attempting... albeit very sporatically... to imitate sounds. It seems like every day we see him do something new, which is very exciting!

Check out this video. It is very long (and I look like I have been living in a box of chocolates and I ate them all) but it is fun to see him do it over and over!!



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