Friday, October 8, 2010


I'm starting to get better at comparing Alanna to other kids her own age.  Many times, I'm able to accept where the kids are developmentally, and accept where Alanna is developmentally and how she does many things a normal kid does, albeit sometimes in a very different way.  However, I've got to confess, I did lapse into my self-pity again this week.  A very sweet little girl I know who is a little younger than Alanna saw her Dad after about a 45 minute separation, saw him, and came running shouting "Daddy, Daddy!" only to be picked up in his arms and swung around... naturally she had a big grin on her face.  After I got over coveting that simple interaction I realized that Alanna does that with me in her own way.  She might try to climb over me, smile, or press her body against mine.  If I'm really lucky I might even get a nice hug!  It is her way of telling me she missed me.

While I'm confessing, I have another thing to share.  My wife sometimes reminds me not to try to plan too far in the future (I am very much long term, forward looking person).  With Alanna, it is so hard to tell where she is going to be.  Some days, I feel happy knowing she will be herself (and develop as far as she can) and that's good enough for everyone, including me.  Other days, I worry myself thinking if I don't keep pushing for the best interventions, she won't make all the gains she could make... and have the best life she could have.

Case in point:  transition to school.  Alanna probably has a few years before this becomes an issue since she is not yet even three.  But when the time comes, do we spend $58,000 a year (how we would even get this money is beside the point) on a designated ABA school like New Haven, where Alanna will certainly learn more skills designed to get to be as independent as possible?  Or, would I use that money to save for her future (RDSP) or another a savings vehicle to provide her with lifetime care?  Yes, she will probably make some gains in the public school system, but she would make probably greater gains in a special school.  However, spending $750,000 until she turns 18 (assuming I had this money) to fund this education vs. saving it for a lifetime care fund is going to be a tough decision.  Some argue once the critical intervention time has passed, intensive intervention is not needed.  This is the refrain of the Ontario government, which stresses constantly that IBI is "time limited."  I am not sure I agree.  However when it is your money and you are responsible for the life of a child, it's not such an easy decision.  I wrack my brain on this stuff.

So perhaps I should "cross that bridge when we get to it", as my wife likes to remind me.  I'll really try.  Let's see how long I can put it out of my mind!


  1. You don't have to put it completely out of your mind, sweetie...we just need to realize it is next to impossible for us to even attempt to make those decisions now. <3

  2. As is evident from my blog, I lapse into self pity quite a bit. But I don't think it is always bad. In many ways we are grieving the child we thought we had. It doesn't mean we love the child we have any less but life is going in a very diffferent direction than any of us planned. I don't think denying that it is hard is helpful.

    That is a tough call with the school situation. How on earth do you make such a decision. I am lucky to live near good public school (ABA) programs. How about a move to New Jersey? The cost of living is insane and the people can be kind of dense but we have great special needs programs :)

  3. Please whatever you do, don't send your kid to New Haven. I can get you some parent references to tell you what goes on in there. (these parents sent their kids there for 10+ years!)

    I agree with your wife, but empathise with you about the planning - because it is so hard not to. I do it all the time and have to force my mind into staying in the now and short term future. It just all comes from fear of the unknown. Your wife is a strong girl :)

  4. ya i can relate to not thinking too far ahead, and just enjoying the now and not worrying too much.. i am with ya brother,