Wednesday, May 24, 2017

When Naughty is Finally Something Typical

Kimberly will be going to Kindergarten in 3 months and 6 days.  Since she has Down Syndrome, this has meant lots of evaluations now, and her IEP meeting in less than 2 weeks.

It took the school psychologist less than 15 minutes to conclude that she would need significant academic assistance.  When his standardized test had him ask her to point to a child cleaning herself (a kid in a tub, one of six options), she instead pointed to the baby crying in a crib and said, "Baby sad, he need a nap."  When he told her to point to something that flies (a plane, again one of six), she instead pointed to the one thing she didn't recognize and said, "What's this?".  15 minutes, 4 "wrong" answers in a row, and she was done.  

I find it ironic that we all know she has a disability and the point of all these assessments is to determine what accommodations she will need, yet the test itself is so set in stone that he has to read word for word what to ask and not deviate or note her creativity and inquisitiveness.

We had two independent assessments done so I could have something for comparison, and two assessments by the school, in addition to the one by the school psychologist.  So I've heard where she is placed developmentally, I've read the reports that show where she is lacking, and I have a meeting coming up where I will again have it all laid out for me.

And yet I still intend to insist upon full inclusion in the general ed kindergarten classroom.

Tonight though, little Miss Kimberly was very typical, in that she was quite deceptive and naughty.

Unfortunately it was not a praiseworthy moment, much as I wanted to cheer her ingenuity and "typical" behavior.

Kimberly didn't want chili for dinner.  Period.  She knew it would take a bit of trickery to get out of eating it.  So Kimberly drank her water, spooned her chili into her cup, showed me her empty bowl and said, "All done!"
 She was clearly a wee bit unrepentant.  While I did take a photo, I didn't crack a smile.  I poured her chili back into her bowl and told her to eat.
She tried a second time for Daddy, even hopping down and grabbing a small Bible to read, hoping to really add to the cuteness.  It didn't work, and the chili was eaten.  Mostly.

While Kimberly does have a problem with articulation and core muscle strength, as evidenced by the phrases "cluster reduction", "devoicing", "replace fricative and affricate sounds", as well as being "avoidant of the prone position"...while she has these and more deficiencies,  I know, without a doubt, that she is one smart little girl.

She will do just fine in school, and I'm sure will teach her peers a thing or two about acceptance and unconditional friendship.  I just hope she doesn't teach anyone her tactics for not eating an undesirable meal.

Saturday, April 22, 2017

Road Trip with My Wallflowers

We have nine children, and four of them seem to get the spotlight the most, especially on my Facebook page.  Amelia is naturally outgoing, she always jumps in to help, she loves having conversations, and we run together.  Leif is our awesome little man who has no idea that his siblings are defined as "different" or "special"...he just loves them and loves life...and has so many innocent yet wise moments.  Kimberly is the baby of the family and naturally gets a lot of attention.  Dante takes a lot of time because he has the double diagnosis of Down Syndrome and Autism, so he would come in 4th for attention received.

And then there are Micah and Sunny.  They just go with the flow, fly under the radar,, and I think they actually try to stay in the background.  Sunny wants to be included, but she also insists on being coerced into participating.  She will ignore all verbal attempts to include her, and if we give up and start without her she will start to cry.  She wants to be taken by the hand and led to the activity and needs to be helped every step of the way.  She is so hard to figure out! She's nonverbal, although she will very occasionally spout something, and I hear her talking to herself in her room. If we insist she will repeat us word for word, to make a request for something.  And Micah, honestly he's just plain lazy and completely content to be so.  He would watch TV all day if we let him, although now and then he will randomly sweep the floor or put away the dishes. The only thing that really gets them going on their own volition is Sunday School and dance class.  Honestly, Micah and Sunny don't get less attention because I love them any less, they just seem to prefer less attention.

Recently my Sailor asked me to help him move some of his stuff from Georgia to Massachusetts, and since I love road trips I did not hesitate to say yes.  I also decided that Micah and Sunny would be the ones to go with me.  They needed a chance to shine.  So this past week, during Spring Break, we packed up and headed south.

 Micah and Sunny each ordered their own meals as we ate our way south.  I did have to repeat Sunny's choices because she spoke so quietly, but she did speak!  Micah also got mad at me halfway through the week because I stopped letting him get fried tenders and french fries with soda for every meal.  He even refused lunch (grilled chicken tenders and green beans) during our ride home on Friday.  
 They were thrilled to see Zachary, even so, Sunny placed herself in the background of the group photo.  She really enjoyed watching the birds on the water.
 Micah does not enjoy being cold and wet, which is what he considers swimming pools and beaches to be.  We did get him to put his feet in the pool.
 Sunny absolutely loved the pool!  She got right in and spent an hour playing.  I went in with her for a few minutes and helped her do some actual swimming, but she preferred to bob up and down on her own, smiling the whole time.  This was a win!

 We played tourist for a bit and went on a boat tour of Cumberland Island, off the coast of St. Mary's, Georgia and Amelia Island, Florida.  Sunny enjoyed seeing some dolphins, but all she said was "Oooooh" multiple times.  

 Another win for Sunny, she loved Fernandina Beach!  Micah sat down and would NOT budge.  It took at least 15 minutes to convince him to get his feet wet, by having him pretend to be a penguin and walk to the water.  (Kimberly and Leif would have been up to their necks in the water in the blink of an eye, Micah and Sunny were a welcome relief to not be recklessly running into the water.)

Micah and Sunny did have a good time on this trip, but there were no "it's my turn to shine" moments like I hoped.  I guess my kids all have their different personalities, and these two are content to hang back and do more viewing than participating in life.

I'll admit I missed having my active ones along.  When going up a mountain in Virginia on 77 the van was slowing a bit-- yelling "everyone start pedaling" would have been a lot more fun with Amelia, Leif, and Kimberly along.  Micah and Sunny couldn't even muster up a "mom's crazy" look.  I never thought I'd miss Leif peppering me with questions from the backseat where I can barely hear him. (He's currently peeved that not all the letters of the alphabet follow the rules for reading, and wants "C" and "X" to be tossed.)

All in all, it was a good trip and I'm happy Sunny and Micah went with me.

Next Fall Leif and Kimberly with both be in school (sigh, a whole other blog post for that), and I will be focusing on academics, life skills, and social skills with just Amelia, Micah, and Sunny.  I'll have a whole school year, instead of just five days, to pull Micah and Sunny away from the wall they prefer, and get them participating in life.