Saturday, February 24, 2007


Since we missed our feeding clinic evaluation last Monday, the nurse decided to send me a packet of paperwork to save time during our rescheduled visit. I am finding it incredibly difficult to complete! I need a paragraph to explain the simplest of questions, such as, "At what age did your child sit up without help?" Let me see, we were able to place her in sitting position for a few minutes (with pillows behind her for when she inevitably decided to flop backwards) at the age of 11 months. She was unable to get herself into a sitting position until the age of 18 months. The space provided for that answer is about 3/4 of an inch. I suppose most people can say " 6 months!" and be done with it...but not us. There are many loaded questions, questions that I'm not sure how much detail to give or how to explain things in a concise manner. Questions like, "Does your child have seizures? When was the last one?" or "Has your child been to the neurologist? What were the results?" or "When did your child speak her first word?" Do they want to know the first time she spoke, even though she went on to lose three separate sets of words? Or do they want to know the first time she gained words and they didn't disappear? When they ask at what age did she begin putting two words together, do her signs count? She has been combining signs for a month or two now, but she is not speaking any word combinations yet. There are variables in almost every question.

Yesterday I was so overwhelmed by filling out routine paperwork that I had to put it down and walk away. I just couldn't find the right answers for their simple questions. I suppose it is because we have no clear cut answers with KayTar. Her baby book is entirely misleading. I have dates for her first words, but those quickly vanished. I have a date for when she crawled for the first time, but it was really more of a belly slither...the true crawling came much, much later. Somehow, we didn't see the gaps for a long while, and we kept plugging along like things were normal. We filled in her baby book as we went along, oblivious to the signs before us. We thought, "Well, we can put her in a sitting position and she can stay for a bit, she just doesn't like it and that's why she doesn't stay for long." or "KayTar just likes crawling on her belly, kids do things in their own ways." The excuses might have been valid, but they were the reason we didn't see the larger picture until so much later. We assumed BubTar was advanced and KayTar was just taking her time. This is partially true, BubTar is advanced, and KayTar is just taking her time, but that isn't the end of the story.

When I want the truth about things, I go through my photographs. I can see plainly that up until July 2005 she wasn't raising her head off the floor. I can see that she learned to climb onto the Lego table in June 2006...but it appears she wasn't sitting on her own much until August 2006. I know she pulled to a stand for the first time in March 2006. She was not crawling, tummy off the floor, until August 2006. After looking through the photos, I was able to sit down and attempt to give the proper answers. Sure I have photos of her sitting much earlier than August 2006, but I know that was because I sat her down and snapped photos like a mad woman before she toppled over. In August, I have series of photos in which she is crawling, sitting, crawling, pulling to a stand. I can see her ability. I remember that at 17 months, we saw the new pediatrician and KayTar laid on the exam table the entire time, playing with a rattle and her toes. At 17 months, she was still an infant. I went back and looked a videos from that time, and I couldn't believe it. It has been a little more than six months and she has grown by leaps and bounds. I want to remember things exactly how they have come to pass.

I'm working on a new page for her book, with clarification on all the traditional milestones and spaces for non-traditional milestones. Her first sign. The first time she walkered. The first time she spoke a word that didn't vanish. Her first MRI. I want to look back in twenty years and remember exactly how it all unfolded, for things to be detailed and accurate. I want to see what I couldn't see then, and I want to compare it to the person KayTar is becoming and feel the amazement rush in...because it will, it already does. Each time I look at her, I am overwhelmingly amazed.


Anonymous said...

I read this earlier today and thought you should attach some of your blog posts to help them understand.

You write so well.

Andrea said...

>>I want to look back in twenty years and remember exactly how it all unfolded, for things to be detailed and accurate. I want to see what I couldn't see then,

I like this part. It pretty much sums it up (for me as a reader, anyway).

It sounds like the people writing those questionnaires don't know what they're doing. Aren't they meant specifically for parents of kids with developmental disabilities? What're they thinking?

Sonia Wetzel Photography said...

GOOD for YOU! Re-write that baby book lady!!! Those forms are so difficult to fill out because of the variables. You aren't alone in that frustration. I was cleaning out Bugga's room today and turning it into his big boy den, and found a bunch of reports etc., from the hospital. I had that same recollection of Bugga not having met milestones and when the realizations were hitting me. I guess he was about 9 months when I stood on the back deck and threw my copy of 'What To Expect The First Year' helicopter style off the back deck into the burn pit in a fit of rage. We need to publish a baby book for special needs kids Kyla!

Em said...

Change the names and fiddle with the dates and you are describing my experience with G. Nothing happened in a normal way or at a normal rate. We did the same rationalising (she's taking her own time, she'll do it when she's ready approach) until it began to dawn on us (around 12 months) that it went a bit deeper than that. But she totally blows me away now. I can't believe how far she's come.

Beck said...

It's hard to figure out the difference between a child who is taking their time and a child who is taking far too long to reach a development goal. It sounds like you're exquisitely aware of Kaytar's development, even if it IS overwhelming to figure everything out - she's a lucky girl to have you in her corner.

Ben and Bennie said...

God, I hate those forms! You nailed it. How in the heck do you give a concise answer about milestones for an exceptional child? and then half the time the doctor never even looks at the paperwork.

WarriorMom said...

I hate filling out forms like that, too. The most frustrating part is when you turn in the forms that you've spent hours trying to answer just right, and they just glance over it in two seconds!

For the questions that I can't answer quickly, I tend to either put a question mark or write, "It depends!" That way, if the question is actually relevant to the current visit, they will ask for more details. If it isn't, then I've saved myself some time and frustration.

JSmith5780 said...

I second everyone...I HATE those forms....and I have to do them for 2 kids. I think I will take warriormom's advice and just put it depends and wait until they ask for further clarification.