November 28, 2009

black and white

Just when I am appreciating what my buddy can do and all that he has accomplished, the Birth to 3 Annual Evaluation comes in the mail.  I was there for the evaluation and it was fun to see which goals he reached.  He performed like a trooper and monkey bear managed to play happily.  My buddy is making strides every day and it feels like a time of explosive growth.

But then I see it in black and white.  There are many areas where his development is “age-appropriate” and I silently cheer and dream of his college graduation and subsequent honors and achievements.  Then there are those areas where his skills are “of concern” or “delayed”.  The dream changes to - maybe he’ll be able to live independently some day.

Oh, and there is the dreaded chart.  He gets a percentile rank - social skills at 42% (the highest of them all) with most below10%.  His age range equivalent (at 12 months old) range from 7 - 10 months.  I know that the gap now is the closest it will ever be.  He will continue to broaden the gap between himself and his peers until it is so large they no longer feel the need to measure it.

Every day it gets easier not to compare and measure my buddy.  Every day he does something he couldn’t do the day before.  Unfortunately, evaluations will be with him for a few years more.  And I will just have to face the reality every once in a while and then put my rose colored glasses on and enjoy the snuggles.

November 23, 2009

wrestling hour

My buddy is an easy going guy, but it takes a lot to make him really laugh.  I spend hours every day pulling out all the stops and doing things I never would in public.  But, alas, no laughter.  His usual expression says, “I wonder what that crazy lady is doing…”.

Every night after dinner, I lie on the floor and he comes crawling over with a determined look in his eyes.  Let wrestling hour begin.  For someone who only commando crawls, he somehow can leap through the air and land on my stomach.  My buddy lets out the biggest laugh as we roll around on the ground.

He just loves rough, physical play.  When monkey bear tickles him,  which is not gentle at all, he laughs and laughs.  My buddy’s other love is anything that lights up and plays music.  He will find 3 or 4 toys and have them all going at the same time.  I guess this means I am in for many years of loudness.

My buddy and monkey bear are so different, yet they compliment each other perfectly.

November 13, 2009

the system

A few weeks ago I attended a Down syndrome convention.  I met some really great people and received some fantastic information.  Perhaps too much information.  It seems like every time I learn something new, it makes my job as a mom harder.

My buddy is in the Birth to 3 system that offers early intervention for children with special needs.  We do physical therapy, occupational therapy, speech therapy, and have a teacher.  I’m sure monkey bear thinks that every baby gets people traipsing in and out of the house doing “exercises” with them.  It’s a lot of different therapies and I learned that it may not be enough.

Right now in between appointments, I become the physical therapist etc.  I have to work with him every day so that he can progress through his milestones at a faster pace.  If he was left to his own devices, my buddy would hit each milestone, just at a much, much slower rate.

I learned that in other states he would be receiving over 20 hours a month  of services while we were receiving 5 hours.  I had a meeting and bumped the hours up to7.  I really want to do what is best for him, but do I really want to fight and buck the system just to have someone in my house interrupting my schedule for 20 hours a month?  And is that really what is best?

How am I supposed to advocate for him and fight for what he needs when I don’t really know what his needs are?  I am not ready for a lifetime of dealing with the “system” and pretending I know what will prepare him for life better than everyone else.  I just wanted a family, not a cause.