Wednesday, July 13, 2011


Well, friends, today is assessment day, the day when our service coordinator and our early intervention specialist sit down with all the reports from the therapists and we talk about all of the things that typical kids can do but Roo can't.

Can you tell I'm in a little bit of a funk here?

This is my 3rd assessment day with Roo.  They have them twice a year, so we had his initial evaluation right after he was diagnosed, his first follow-up in January of this year, and now today.  We review what his goals were for the preceding 6 months, look at the current evaluations from his therapists, and make new goals.  I'll be honest, out of every hurdle we have faced since Roo's Down syndrome diagnosis, the assessment days are the hardest for me.

Words like "at risk" and "below normal range" flood the reports.  Some of the goals from the last assessment just got copied right into the new one.  Age ranges for his development don't go above 12 months, and most of them are below that.

This is hard.

In my life I've become very familiar with the things people say to be supportive that probably shouldn't be said.  Since Roo's diagnosis, I have heard over and over again, "Oh, I just know he's going to be high-functioning!"  This is usually given along with some rock solid evidence, such as "he's just so cute" or "he's so sweet" or my personal favorite "just look at him--you can't even tell anything is wrong with him!"  (I'm going to leave that one alone because if I start, my head just might explode.)  But guess what... there's just no way to know.  And every single time I look at these assessments and I see that he's behind, I feel like I'm letting someone down.  Like one of those people who just know how high-functioning he could be will wonder what he might be able to do if he had a mom who was doing more for him.  And worst of all, I feel like I'm letting him down.

Don't get me wrong.  I am well aware that he is not going to develop like a typical child.  But that doesn't make it easy.  And harder still are all of the people I "know" (some in real life, some through blogging) who have kids Roo's age with DS... and they are so much farther along.  They are saying words and cruising and picking out the right picture in a group and doing all of these great things... And we're just not there.  And we're not even close.

And mom guilt is a killer.

Am I not working with him enough?  Should I be pushing harder?  Is it because of his weight gain issues--is that slowing down his overall development?  Is there something more I should be doing?  Or worse yet, does this disappointment make it seem  like I am disappointed in my child?

I'm not, by the way.  I am head over heels in love with my child.  But sometimes I wish we could just raise him in a bubble, where there's no one else to compare him to, no expectations.

There's actually a popular phrase in the DS world right now: Expect, don't accept.  It's true--for a long time, a diagnosis of Down syndrome came with the idea that you just had to accept that your child wouldn't be able to do or learn or contribute much of anything.  Thank God that isn't the case now.  I have great expectations for Roo.  But where is the line?  He's a 15-month-old baby boy.  All of my high expectations don't mean a thing if he's just not ready to do something.

So for today, I'm expecting my sweet baby boy to take a good nap while I shed a few tears.  And I expect that he will wake up on his own timetable, not on mine, and that he will continue to melt my heart with his smiles and laughter and his little frog-hop crawl.  I expect that he'll be happy most of the day, that he'll cry when he bumps his head, that he'll throw every toy that he picks up, just like he usually does.  And I expect tomorrow will worry about itself.


Lynn said...

Sometimes I wish you were closer. Being a mom puts the weight of the world on our shoulders and we always want more. Roo will shine in his own time. God gives us challenges built just for us. While I've never been in your shoes, I will say that you are strong and mighty. Shed some tears and know that there is no weakness in that. I'm thinking of you. Love you.

Kim Kush said...

As a mom of a child with down syndrome I totally understand what you are feeling. I find myself comparing her to other kids typically developing and with ds. The unknown is so hard. I just try to tell myself that she will do it in her own time but trust me it's hard. I keep hoping that for one day I won't think about ds. Maybe someday. I also have shed many tears. Just yesterday! I always think its good to talk to someone who has gone or is going through the same things. Hope your day goes better!

That corgi :) said...

hugs to you; I have no words of advice, but did want you to know I read your post and I understand your thoughts; my now 25 y/o daughter has cerebral palsy so I'm well aware of assessments, goals, etc. Don't beat yourself up and try to second guess things, should I do this, should I do that? Do what you can and hope for the best and just trust in God.