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 myself...it'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.

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.

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.

Dante and The Birthday Party

A few weeks ago Dante came home from school with an envelope tucked into his communication binder.

It was an invitation to the birthday party of a boy in fourth grade.

To say I was stunned is an understatement.  I honestly did not know what to do.  The mom had written a note in the invite, asking me to please bring Dante to the party, or just to their house for a bit, because her son really wanted Dante to be a part of his birthday.  She included her phone number so we could talk about it.

Several days later I did call her (because I am a world class procrastinator), and while she did not know Dante has Autism she had "gathered he had something going on").  I also mentioned that since he has Down Syndrome too he is not some kid with high functioning Autism.  She insisted that her son really likes Dante and is a sweet boy, so I agree to bring Dante to this (indoor) pool party.

To backtrack, Dante is in a completely separate special needs classroom, but kids visit them, and Dante has been visiting the 4th grade.   Recently he even began eating with other kids in the cafeteria, and goes outside for recess.  This is how he became known to the birthday boy, and is considered a friend by him.

I am not really sure how much Dante understands friendship, but I've been telling him for over a week that he will be soon going to his friends birthday party, and that we will be swimming.  I was a bit anxious, but was going to go through with it.  (Especially since Dante loves swimming.)

Yesterday when I told Dante it is time to go, he went out the door and into the van quickly, so I think he understood.  He didn't greet anyone there, but did walk around checking out the party room.  Everyone was very nice and despite knowing no one it was looking good. After he and I changed everyone was heading to the pool, where he promptly tried to jump in, despite the directive by the lifeguards for everyone to sit on the bleachers for rules.

I thought it would be awkward, but I honestly had no problem being the only mom NOT on the bleachers chatting, but instead being the only Mom IN the pool with her kid.  Dante and I had so much fun "swimming" for almost an hour, and every few minutes his friend swam over to ask Dante if he was having fun and to give him a splash.  I assured him Dante was enjoying himself and helped Dante splash back.

Then the lifeguard rang the "pool time's over" whistle, Dante did NOT want to get out.

Have you ever tried to wrestle an octopus out of the ocean, dry it off with a towel, and get it dressed?  While it is yelling at you?  And all the beachgoers are trying not to watch or let their kids stare?  (This process lasted from the getting out, getting the towel, through the hallway, into the bathroom, and back into the party room.)

Poor Dante had a very difficult time accepting that his pool time was done.  The mom and I had already discussed that Dante would not stay for the remainder, because of being overstimulated...and his diet concerns on my part.  So we finally got it all together and headed home.

Despite the dramatic ending, I am very glad I took Dante to the birthday party.  He and I had a lot of fun in the water, and he made so much eye contact it was amazing.

This was the first time in more than 10 years that one of the kids has been invited to a birthday party.

This morning I put Dante's communication device in front of him and asked, "Did you have a good time at the pool birthday party yesterday?"

Dante reached over and tapped, "Yes".  

God is good.

(And that was Dante's first time using the device to answer a query instead of making a request!)

Home School Day at Old Sturbridge Village

We live near an amazing "living" museum, Old Sturbridge Village.  A few times a year they have "Home School Days", with special session in the education building.

I registered the kids-- Amelia, ShanLin, and Leif-- online.  Oddly, there was no box to check for special needs or disabilities.  There was no spot to put a description of what extra help my children might need.  No opportunity for them to think differently about my kids.

 When we filed in with everyone else to join the appropriate group (Stenciling, for my kids), no one looked at them, then looked at me and said, "You'll be staying with them, right?"  Not one question or quizzical look.   No one asked for any special instructions. They didn't even have to call it inclusion.  They were simply kids in the class.

When they were done, the teacher pulled me aside and said Amelia had been an incredible help to her during the class.

Kimberly did a wonderful job of playing with the doll house, blocks, and puppets while her siblings were making note cards.

Afterwards, we had lunch and walked around a bit.  We are members at "The Village", so they have been there a lot and walk around with confidence.

After lunch we went back to the education building for another class; making and cooking pancakes over a fire.  They enjoyed their session, and Kimberly discovered a wooden cow and had even more independent fun...she has quite an imagination!

I have been trying this year to get the kids out to a lot of learning opportunities in the community...story hour, shopping, gym class at Springfield College, and other special (and affordable) home school events.  It is so nice when places, like Old Sturbridge Village, don't bat an eyelash at the quite obvious fact that 4 of the my kids have Down Syndrome and lower their expectations.

Although, it was a little embarrassing when we had breakfast at Cracker Barrel, and Kimberly finished her food, got down and tried to walk into the kitchen with her empty plate.  After all, they clear their own plates at home...