A progress report

At Charlie’s physical therapy appointment on Monday they did an official “assessment” of his progress and where he compared to “normal” kiddos his age.

To be honest, I had completely forgotten about the assessment.  In the past this would be notable.  However, Monday’s appointment was just another therapy session our calendar.  There was no worry leading up to the appointment.  No performance anxiety.  The results wouldn’t change how we would proceed with therapy services.  It was simply a progress report to see where we are, how far we’ve come, and what our future goals are.  Simple as that.

Now before you start thinking I’m too relaxed let me shed a bit of light on the subject.

Motherhood has changed me.  Mothering Charlie in particular has changed me.  And only for the better.

You would think that with the countless therapy sessions we have on a weekly and monthly basis I would be wound tighter than a drum, stressed by our schedule and fixated on our many “goals.”  Quite the opposite is true.  I believe there are a couple of reasons for this.  1.  You only know what you know – and thus make accommodations accordingly.  2.  My primary goal as Charlie’s mom is to ensure that Charlie the best Charlie that he can be.

Yes, it may sound cliche and over simplified, but it’s true.  I don’t obsess over milestones, goals, or what other kids his age are doing.  And no, this isn’t limited to Charlie – I’m the same with Henry.  This doesn’t mean that I have low standards for my children – that is far from the truth – our expectations are high.  Really, what parent doesn’t long for her child to reach their full potential – whatever that may be?  But our expectations for each child are as unique as the individual.

Back to the assessment.  I knew that Charlie would be “behind” and would score quite low in the gross motor section.  The assessment is in comparison to “normal” kiddos, and when you aren’t walking at almost two years old, the scoring clearly reflects that.  But really, the kid is a crawling/cruising maniac and I can only imagine that walking is in the not-so-distant future.  Even so, his score reflected a significant delay in gross motor skills.

The other portion of the assessment was focused on fine motor skills.  In this area Charlie excelled.  Stacking blocks, coloring, placing small items into a container.  In fact he scored within the “normal” range.  If they were to use this assessment to determine what services he needed, his scores would have actually worked against him – as in he wouldn’t qualify for services because of his high score.  But for our purposes that wasn’t and won’t ever be the case – Charlie’s diagnosis of Down syndrome will always “qualify” him for services regardless of his assessment scores.

Overall, we were pleased with the assessment and Charlie’s “performance.”  Yet I walked away with mixed feelings.  How could I not be bothered about the significant delay in gross motor (and it will happens – when Charlie determines its time to walk), but at the same time be so proud and pleased with his high score and achievements in the fine motor area?  Wasn’t I contradicting myself?

I’m still not sure.  I realize that I may have a fairly relaxed attitude about many of the Down syndrome related issues that we may face.  Because really, it is what it is.  My love for Charlie isn’t dependent on the results of an assessment test.  It won’t change how hard we work together to reach each milestone.  Yet, part of me wonders if its OK to want to quietly cheer when the words “within normal” in relation to Charlie are used.  What parent doesn’t want to shout it from the rooftops when their kid does something great, let alone “normal?”  Yet can you do that without losing focus on what is important?  And does it really matter?

With that final question I decided that I had done enough deep thinking for the day.  It was time to whip up some bran muffins with the boys and play a few rounds of Animal Scramble while they were baking in the oven.  Because when it boils down to it, my role as mom is to love, support, and encourage my kids.  To celebrate their successes, while helping them reach their individual goals.  And to toss any doubt, worry and comparison out the window.  To let go of the things that I can’t control and rest in the knowledge that my children are healthy, happy, well-adjusted and thriving.  And that yes, its OK to shout from the roof-tops that I’m proud of their every achievement.  Even the normal ones.


10 thoughts on “A progress report

  1. Wise, wise words for all mothers. You are an amazing mama and role model to those who know you. Thank you, dear friend. oxoxo

  2. “But our expectations for each child are as unique as the individual.” Thank you for that reminder! And… I just had to order the Animal Scramble game. I am always looking for fun games that require physical exertion ;-) Thanks Libby!

  3. Keep on being a great Mom. I too have a son with DS (he’s 3 1/2) and I celebrate every acheivement he comes to. I love your outlook and always strive to be as positive.

  4. I don’t sweat those progress reports either. It is what it is. I am happy for whatever my daughter can do and I don’t get nuts over what she can’t. I am grateful for all the intervention she receives. I try to follow through on their recommendations as best I can. However, I don’t beat myself up if I can’t get to EVERYTHING. Donna Marie seems to be progressing nicely at her own pace, as I am sure Charlie is as well.

  5. What is so amazing is that the attitude you exude about not sweating assessments, goals and day-to-day therapy things is exactly what will help your son progress, not the other way around! After half a career doing PT with many kids like Charlie, the parents with perspectives like yours almost always enjoy greater success in motor and everything else. Thanks for sharing the progress report.

  6. It’s interesting to see how things play out in different areas. We don’t have that same kind of assessment–only family service plan meetings twice a year. We are preparing to have our very last one in a few days, because six months from now my Julianna will be three, and graduating into the public schools…starting a whole new series of adventures, and of parental education. :/

    Your attitude is good. For myself, I find that I don’t have time to obsess about where she is vs. where she should be; we can only focus on individual milestones. But walking gave us a big headache–she took her first steps in December, and didn’t walk until ten days ago. We still get all warm and fuzzy, watching her walk, but we’re itching to get on to other things–speech, and self-care, toileting. You know. Toddler stuff. :)

  7. i completely agree with everything you said! i don’t think you are too relaxed. you take care of charlie and help him to reach milestones but you don’t put so much pressure on yourself and him that you snap or lose sigh of what’s really important. charlie is doing awesome! and don’t forget that every kid is different…while charlie excels in fine motor there might be a kid his exact age that excels in gross or speech. he’ll get there in time!!!

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