Tuesday, February 28, 2012

Saying Goodbye...

I haven't written in, well, forever.  Actually almost a year.  It has been a strange year and for some reason I could never motivate myself to write.  I thought about writing a lot.  In fact I started a few posts and then ended up deleting them.  I would tell myself that I didn't "need" to write any more.  There were no major changes.  Life has been plugging along and it didn't seem like anything that someone would care to read about.  I then realized what I had done.  I had made this about other people and not about my need to get things out of my brain.  I went back to my "perfect" thought process...if my life wasn't going to encourage readership then it wasn't important enough.  Boo.

So I have decided it is time to return to writing with my original intent.  To be open and honest...with myself first and with anyone who is reading second.  I have been motivated today for a very specific reason.

Today was our last day of tiny-k Early Intervention.  The program we have been with since T was 4 months old.  The provide services for kids with special needs or developmental delays.  We have had physical, occupational and speech therapies with them for almost 3 years.  The program is only for birth to age 3 and Truman's third birthday is Friday.  We will no transition from tiny-k to the school district.  Which is completely overwhelming.

Our time with tiny-k has been incredible.  Truman and I (and very frequently my mom) have had weekly visits with our therapists since he was an infant.  I say "our" because they truly were "our" therapists.  They cared as much about me as they did Truman.  They held my hand, listened to my fears and helped get me through the tears.  Some days were full of excitement with giant strides but most days were simply continuing to work on all areas of my little man's development.  They were able to push him in ways that I never could.  They were able to encourage me to let go of some of my fears and let him fail.  We are so blessed to have had this time with them. 
Saying good bye today meant more than just the therapy visits.  It was also saying good bye to a lot of my beliefs on where we would be at this point in T's life.  When we started at 4 months old I believed we would have a few visits and he would catch up and everything would be just fine.  After the first few months went by I still believed that he would be able to eventually get there and we would move past our time with tiny-k.  I don't remember the exact moment when I realized that he wasn't going to graduate from tiny-k services before he aged out of them...but I do remember that at some point I came to terms with it. 

I set a new thought process in place...that he would be "fine" by the time he would need to move on to the school district.  Again, we would figure out what was "wrong" and "fix" it and all would be good in the world.  I never wanted to believe that he would enter the school system at age 3 with an IEP.  But here we are.

Today when the therapists left I didn't get to celebrate.  I didn't get to laugh at where we had been and find comfort in where we are today.  Truman didn't graduate. 

Tomorrow we will set down with the school district to review his evaluation and go over his IEP (Individual Education Program).  My son, at 3 years old, will already be labeled before we would even be thinking about kindergarten.  We will start his "permanent file." 

Growing up I was always terrified of my permanent file at school.  My grade, my behavior, my activities were all part of that dang file that somehow would make or break my future.  I remember hearing about standardized test being put in my permanent file as a first grader and freaking out that I hadn't done well enough. 

Now T will have his permanent file started for him with statistics and age appropriate development graphs, charts of his progress (or lack of) and an IEP of goals. 

My family has never had a child who struggled with school.  Not really.  Not like this.  Grade card time has always been a time of bragging and paying for straight A's.  I never got below a B...ever.  My nieces are geniuses.  Like really geniuses on the official IQ scale.  My daughter is an amazing student who is constantly excelling past her grade level. 

I don't know how to do this.  I don't know how to work the system of special education.  I don't know how to make sure he is getting everything he needs even with budget cuts and lack of resources.  I don't know how to fight for him.  And to be honest I don't think it is right that I have to start figuring it all out at 3 years old. 

So, we said good bye to a lot of things today.  To amazing women who have changed our lives.  To being a baby.  To pretending that everything is going to be "fixed" at some point.  To not having a permanent file.  To not having to fight for services.  To knowing what to expect.  To not admitting that T truly has special needs.

I don't think I am ready but I guess there is no looking back.


  1. You are a fantastic mom, thank you for sharing your story.

  2. *hugs* Once again, I could have written this post one year ago about this time. I hear ya... With 3 brilliant kids, I don't know how to do this either for Jeffrey. But we learn, we lean on loved ones, we talk with other families that deal with similar challenges, and we grow as a mom, as a person, as a child of God. These precious boys were placed in our arms for a reason, and we are so blessed. *hugs* Always here for you.

  3. Becca, I don't know how you do it; the fear, the constant uncertainty. You're living my nightmare, a child with an unidentified health issue, and you're doing it with such grace and bravery. While Truman may always face challenges, there will be so many other things that he excels at. I am so glad you updated your blog, I've been so curious about what's going on with Truman, and I never want to ask, because maybe you don't want to talk about it that day....

  4. This is a wonderful post and thank you for sharing your thoughts. You always have such a positive attitude when you're out and about, but I know you always have T and his challenges in the back of your mind. I have a quote in my office, and your thoughts remind me of its message:

    "For a long time it seemed to me that life was about to begin-- real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. At last, it dawned on me that the obstacles were my life. This perspective has helped me to see there is no way to happiness. Happiness IS the way. So treasure every moment you have and remember that time waits for no one. Happiness is a journey, not a destination..." (Souza)

    Lots of hugs on your journey-- and I know T brings you TONS of happiness!

  5. What a sweet, wonderful boy you have! I'm so glad you've had such great support from the very beginning and that you have so much love around you, as you walk on into your future as a family, unknowns and all. I'm sending you tons of love from Oregon.

  6. I am glad you are writing again! I love your blog and perspective. I delayed and delayed months but I am glad I bit the bullet last year and we have had nothing but positive experiences with our school district and IEP process (so far...). We are trucking ahead, 3 years until kindergarten and I am already nervous about what it will bring. All we know is it won't be "traditional" and we are always thinking outside the box. I made sure our IEP stated we might be absent for weeks at a time, learning out in the world instead of school. Hugs to you all!