Wednesday, January 28, 2015

All I'm saying is it kinda sucks...

I know why parents of kids with special needs tend to dread IEP meetings.  Today wasn't our first one.  We sat down with a similar group of people last year around this time to write her IEP goals and before that she had yearly evaluations in Early Intervention those went pretty much the same.

Here’s why IEP meetings tend to suck.  As a parent, one of the hardest things to hear, besides bad news about their physical health, is that they aren’t performing at the same level as their peers; typical or otherwise.  

This morning was Tera’s first annual IEP review meeting.  She has almost completed one year (minus the summer) of Early Childhood.  On the plus side, Tera has an amazing team of people that work with her and that we are in pretty regular contact with.  In this past year, we feel that Tera has made some pretty great strides in her vocabulary and also with her fine motor skills and gross motor skills.  She really only has one PT goal at this point and that is to be able to navigate stairs, curbs, and other steps without assistance.  She can do it, but as her PT pointed out, much of her struggle is due to her short stature and her inability to get her legs up as high as she might need to.  But anyone who has seen Tera move knows there isn’t much that slows her down.  

She met her OT goal of being able to draw horizontal and vertical lines and also circles.  She holds a writing utensil the correct way most of the time, and can write the “T” and “E” in her name.  Next up will be diagonal lines, letters with curves in them, and being able to complete three step skills (cut, glue, stick) with minimal cues and also while keeping her hands to herself.  They will also work on getting her to write the first letter of her last name after her first name, which works out well since she is a master of the letter “T”.

Then there are the other goals.  We received a copy of her goals for this past year in her backpack yesterday.  As a result of our every evening activity and also with Zoey being sick, I didn’t look it over until this morning before our meeting.  I’m glad I didn’t.  At the bottom of more pages than I expected, were the words, “goal not met”.  I won’t lie, that stung a little.  I didn’t think she was necessarily going to blow through all of her goals with no setbacks (although it would have been a pleasant surprise), but I didn’t expect that painful phrase to appear as many times as it did.  She is still struggling with consistently counting from 1-5 and higher than 5.  She’s also inconsistent in her ability to name colors and shapes.  

There are several other goals; some she met some she didn’t.  But the part that I really wasn’t expecting, and that was the hardest to hear, is that she showed regression in some areas and therefore qualifies for their summer school program.  We don’t have to do it, but at this point I’m not sure why we wouldn’t if she needs it.  So that means, to the best of my understanding right now, that it would be for five weeks, four hours a day and it would be either in Vernon Hills or Gages Lake.  Which also means she would probably be bussed.  Okay, so there’s something else I have to come to grips with.

They did do a great job explaining all of her strengths and I can tell that even with her behavior struggles, everyone that works with her is able to see what a true joy she can be.

Now mind you, we also decided to keep Zoey home today after yet another episode of throwing up at daycare due to her congestion.  So not only am I dealing with what I think is a fairly typically emotional time of having to hear what your child still can’t do, we’re also getting over three of us having the flu and strep and wondering what the next few days, and nights, will bring with Zoey.  

And so as my day progressed after the meeting this morning, I found myself more and more despondent over the situation.  And I don’t think I have to be sorry for that.  It sucks big time to hear that your kid isn’t doing what they hoped she’d be able to do a year ago.  It sucks to know that we may face many more of these types of meetings over the years.  And I could be optimistic and say maybe from here on out she’ll start meeting more of her goals and maybe she’ll even start to catch up a little to her peers.  But right now, I’m too tired to be optimistic.  Yes she’ll do the things she isn’t doing right now eventually, but for today, it makes me sad and I think I have the right to feel that way.  

Compounding the emotions is knowing that Zoey is also demonstrating some delays in her gross motor skills and so we’ve enlisted the help of Tera’s former PT.  While it’s great that we have the connections and knowledge that we do about developmental delays in babies, I really wish I could say I was more ignorant on the topic.  I could do without worrying about the fact that Zoey is actually further behind than Tera was at this point in her ability to hold her head up while on her tummy.  Or that, while Zoey did in fact roll over in her sleep at daycare on Monday, Tera was already doing it by now.  Am I losing sleep over it? Well, I’m losing sleep over Zoey’s current health dilemmas but not really her inability to tolerate tummy time.  But it is on my mind and conscious concern.  

It was stressful and exhausting enough to constantly be thinking about and working on both Tera’s health and development.  But now with two kids? It’s why I can never stop coloring my hair; I’m too afraid of what might be underneath.  So in the midst of the worry and the stress, I still have to be a mom and deal with it.  We nebulize both kids and watch for the symptoms we know to be problematic.  We work on the strategies we can with them to help them get through the current concerns.  We talk to the professionals that work with them and let them do their job to help our kids.  I think about them day and night constantly wondering if what we’re doing is enough even though I know we do our best.  And we muddle through the chaos, the worry, the stress, and the illness until calm times come again.  However short lived they may be.  Oh yeah, and I drink wine and vodka; not usually together though...

I'm not looking for pity. I truly am not. These are the risks you take when you decide to have children. Some people get lucky and some people not so much. I still consider us very lucky; challenged but lucky. But lucky as we are, there are days when the challenges are a bit harder to handle, especially when they come all at one time. So we'll continue playing doctor, teacher, and therapist at home and see where the hell we all go from here.

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