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.

Sunday, March 20, 2016

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!)

Friday, March 18, 2016

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...



Monday, March 14, 2016

Dante's Annual Physical

Today Dante had his annual physical.  The one day a year I take him to the doctor for no reason other than to irritate him. If he could talk, I'm pretty sure that is what he would tell you.  With a few swears thrown in for emphasis.  Because he most certainly was irritated.

Dante has low muscle tone and has difficulty standing and walking without looking like a drunk sailor.  (No offense to my Sailor, if he ever has the poor judgement to get himself drunk)  With his hypotonia in mind, the fist thing I do is tell Dante to tell on a scale and keep his hands to his sides. This is very difficult for him, but as his Mom I make him do it.  (He's up to 52.8 pounds!)

Dante has LOTS of sensory issues, many of them around his head.  So the next thing I do is tell Dante to stand against the wall while the nice nurse lowers something onto his head to see his height. (He's a whopping 48 inches tall!)

Then we go into a small room and I make him sit on a strip of crinkly paper.  Mom isn't doing so well at accommodating his sensory input issues.

Then the nice nurse wants to take his temperature in his ear-- a surprising victory, but I've spent tons of time rubbing his ears to desensitize him a bit...Yay Mom!

She said she would be right back with the blood pressure cuff.  And my standard response:  smile and nod.  I have to let her try, so she can say she did.  (Dante has never successfully had his blood pressure taken while not sedated.)

By now Dante is starting to laugh, a lot, and swing his body and head.  "He's so happy, how adorable!" Says the very nice nurse.  What I want to reply is, "He's not happy, he's anxious and stressed and has no idea why we are here doing these things and he wants to understand but his body won't work the way he wants it to and he wants to let you touch him but his body is saying no and he just wants to be home, so he laughs because that is what his brain is using to escape."  Or something like that.

But I know I have to just smile and nod.  Because he is a happy boy.  But this laughter was not his happy place, it was his overstimulated torn with anxiety place.

The worst part came when I have to be the one to help hold him for a vaccine, and even worse when I sit him on  my lap, wrap my legs around his, hold his left arm to his chest with my right hand, use my left hand to hold his head back against me, and let the two nurses draw his blood.  Because if I didn't do that he would kick the nurses, grab the needle, and slam his head back into my face.

I have to be the one to allow them to hurt my son, and he can't understand that.

Autism is hard on me, but it is Hell on my kid.

When we left he was crying, no longer yelling, but he refused his coat and stripped his shirt off in the van so he could take off the band-aid...one more nail in the sensory overload coffin.

Thankfully, the drive home made it all better.  Rather, Brad Paisley made it all better while I drove home, since I put "Copycat" on repeat and turned up the volume.

That's when he was happy.  With a gentle giggle and attempts to sing along with Mr. Paisley to his favorite song.  My sweet, happy boy.

God is good.   (Autism is not.)


Wednesday, November 11, 2015

Feeling Blue

Days have been passing so quickly, and it has been three months since I took the time to post here.

Summer has come and gone, and we are well into our home school year.  Amelia has taken off with her reading skills, and I have switched to using Alpha-Phonics with her.  She has a solid basis of hundreds of sight words, and is taking well to phonics now.  Micah is also using Alpha-Phonics (the exact same book I used with Alexander and Zachary, only slightly falling apart), but he is going slower than Amelia.  It will be some time before ShanLin is able to read, and she may never get past a first grade level.

Dante is still doing amazingly well in his special school.  Unfortunately over the Summer he began displaying some more assertive tendencies (I refuse to use the word aggressive just yet), and we are working to see what is going on.  It seems to be a combination of unmet sensory needs and the excessive energy of puberty coming on.

Leif is still his amazing little self.  The other day he took something from Kimberly that she should not have, and when I thanked him he simply said, "Just doing what I have to do".

And Kimberly.  She might be the baby of the family but she makes sure she is busy and doing what everyone else does!
 The other day she helped herself to some paint.


When she could not reach the paper, she simply painted herself.


And then she cleaned it all off.


She does sit still for a few minutes here and there, with one of our pets.


Back in August while we were on vacation, I noticed her night time sleep was fitful and interrupted by gasping for breath.  After nearly three months of appointments and waiting, she had a sleep study done last night at Boston Children's Hospital.

She studied for the Study.




And Daddy reports that she was an excellent patient.  

In a week or so we will have some results and see her ENT.  In the meantime, we will be keeping just as busy and active as we always are....

God is good.