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.

Monday, August 15, 2016

Friends for a Week

Most fifteen year old girls have a circle of friends.  I'll admit the first image I see is a girl sitting sideways in an armchair twirling a phone cord while talking for hours, but that is dating's all texting now.  Mom's dropping kids off at the movie theater with admonishments to be safe and have fun.  Going out for ice cream and checking out the teen boys.

Amelia, she does not have any friends.  At least not that call her up and say "Hey, wanna go to the movies?"  She has dance class friends, and maybe some day that will evolve into get togethers, but not yet.  She does have a respite person who takes her out twice a month, but she doesn't know its her job to be her friend.  (Don't get me wrong, she is absolutely wonderful with Amelia.)

Thankfully, Amelia is blissfully unaware of what her social scene is supposed to be like, by today's standards.  She and Sunny are great sisters, she and Leif do a lot together every day.

She does go to Sunday School, where she is accepted by the adults and tolerated by her peers.  (At least I think she's tolerated, I've yet to see any of them interact with her.)  We have tried a home school co-op but they were not accepted by their peers and so I pulled them out...maybe I should have stuck it out but it is very hard to see other Christian children staring at my kids and edging away from them while the Mom's are blissfully unaware because they are chatting up a storm and I've been told to stay with my kids as a condition of attendance.  (Long sentence, sorry.)  I have also flat out been told "no" my kids are not a good fit.

It's okay though, because Amelia is a very happy girl.  She runs 5K races and soaks up the cheering when she crosses the finish line.  She adores Miss Lu at the library, and the cashiers at Big Y happily let her help with the bagging.  We frequent Old Sturbridge Village where everyone is very welcoming. Our community is very good to Amelia.

Last week, Amelia was given the experience of a lifetime.  She had a BFF for a week.  We went on a Joni and Friends Retreat, and Amelia was given an STM (short term missionary) for our time there.  Abbey chose be Amelia's friend.  She wasn't paid, in fact she paid her own way to be there.

Amelia and Abby went to campfire and sang songs, they learned the basics of archery, they spent every day with other teens doing what teenagers do.  Amelia cried each night when we parted ways for the evening.  She absolutely loved having a friend.

Kimberly and Dante each had their own STM , too.  It was a good week all around.

If you are part of a special needs family, look for a local Joni and Friends for a retreat, or other activities.  It is an amazing, loving, caring ministry.

Amelia might not have any friends to text, but that's okay right now, because she is happy, and she was truly blessed last week, and that's enough to carry her through until next time.

God is good.

Friday, July 15, 2016

I am a Runner

A few years ago, when my son joined the Navy and had to do basic training, I decided to take up running myself.  I started on the treadmill, and just wanted to be in better shape.  I followed a Couch to 5K plan, to give me some focus.  

Dante has always loved going for long walks, and sometimes they turned into runs, and someone suggested we run a 5k with Team Hoyt.  Last September Jamie and I did run a 5k; he pushed Dante while I pushed Kimberly.  We really enjoyed it and looked forward to more running with them.

All of my running was either done in the field next to my house, or on the treadmill...but this past February I got the idea to invite Amelia to run with me, and to train together for a 5k.  I don't remember why, maybe I thought she would enjoy it, or probably I just didn't want to run alone around town, and she was an excuse to not have to push myself to a faster pace, or maybe I just knew it would give her and I some quality time together and give her a huge confidence boost.

So we ran, and Amelia absolutely loves it!  She is completely willing to push herself harder, to go the distance and keep running even when she would rather walk.

 Amelia pushed me, too.  I would often arrive home from shopping to find her sitting on the couch in her running clothes, with sneakers on. I didn't always want to run, but she kept me going.  She and I developed a pep talk for when she grew tired,  "I am strong, I am smart, I am a runner!!"

Amelia's coordination improved, and her confidence soared.   Our first 5k was April 30th, and she loved the crowd, the excitement, and the cheering as she crossed the finish line.  This sealed the commitment, Amelia was definitely a runner now.

Since April 30th, Amelia and I have run four more races together, two with Kimberly, Dante, and Dad, two without Kimberly and Dante.

Amelia was given some new running clothes, and we continued to run through town togehter.

Now and then Sunny would put on her sneakers and Amelia's clothes, so I took her for a run to see if she would like to start training with us.  Sunny clearly wanted to be a part of whatever was going on, but without the running involved.  (We've since discovered that she very much likes to paint her nails, something Amelia has no interest in.)

Amelia came in Third Place in her age category at the race we ran in June!  Every single night she insists on using her 5k glass at dinner; she is so proud!

We made her a corkboard wall to display all of her running bibs, and she intends to fill it.

 Our most recent race is my personal favorite, because we were able to run through Old Sturbridge Village, a place we love to visit often.  Parts of the run were like a time warp, with nothing modern in sight.

 (In this photo, Amelia was excited to catch sight of Dad up around the bend, in front of the brick bank.  He was a tad faster than us.)

And so we run.  And Amelia, who has no idea that her diagnosis of Down Syndrome is supposed to hold her back, continues to get faster, get stronger, and get smarter.  

Because she is fast, she is strong, and she is smart.  She's a runner.

God is good.

Wednesday, June 22, 2016

Our Escape Route

We have a house, almost half an acre of land, free education for our kids, jobs, and a huge garden growing our food.   For all of this, I am thankful.

Yet sometimes, the jobs are tiring, the housework and weeding are overwhelming, the free education involves lots of meetings, the therapies and medical appointments that accompany five special needs kids are unending...and an escape route is needed.

Ours leads us straight to Rumney Bible Conference.  It has been 17 years since we started taking our family up there for a week every Summer, and a number of years ago Jamie's parents bought a cottage on the grounds, and they are very generous with allowing family and friends to borrow it. A few weeks ago Jamie made a call to his parents to ask if their cottage was available, and we just spent the last three days escaping real life. It was wonderful.

I really think the kids believe it is their second home, they love it so much.

Fishing, walking the woods, playing, relaxing, kayaking, fishing, sleeping, playing cartpetball and foosball, rollerskating and biking, squirt gun battles and snacking....we fit it all in with barely a minute to spare.

Thankfully the family will have a full week in August to do all this again and more...the Snack Shack and pool will both be open then, as well as the Saturday night concert and maybe even tubing on the Baker River.

For now though, we are refreshed, and I might be ready to start filing the 4 inch thick stack of bills, IEP progress reports, notes from doctor appointments and their reports, insurance correspondence and more....maybe later.

First I have to pull weeds and do something that resembles housework.