Sunday, August 17, 2014

Growing Up

 I think we have photographs of each of the kids washing the dishes for the first time.
 She thinks she is just having fun, splashing in the water and "washing" some spoons.
But I know what she is doing.
Kimberly is not just playing.
She is learning to help.

My little girl is growing up.
I am so thankful for this little girl.

Monday, August 4, 2014

All I Want...

Jamie and I are blessed.  We have a home, 3 vehicles, secure jobs, and food in the cupboards.

And 9 AMAZING kids.

Gustavo, I am happy.

We are allowed to choose to home school.  We have graduated 3, and once Nikita leaves for the Navy tomorrow (sniff) we will have launched all three on career paths.  The remaining 6 will be home again this year, and I look forward to our time together each day.

Jamie teaches, which means he makes a difference in a lot of teenagers lives each day, and gets to be home with us every night, weekend, holiday, summer, and snow days too!!

I have a good job waiting tables, with as many or as little hours as I need.  (Cutting back after Nikita leaves!)

Just one thing is out of my grasp.

All I want is to sit next to my husband in church on Sundays.

Instead, autism has separated us.  The problem:  there are not enough adults willing to take a turn being with my Dante so that he can attend Children's Church.  It became too inconsistent for my family, wondering if there was someone this week or do we stay home.  So I said thanks for the time spent, but this is falling apart.  I even tried sitting in the glassed front Family Room where we can see and hear but not be heard...at least I could see Jamie and the other kids sitting out there in the congregation...but the other parents find it too difficult to not use the room as fellowship time instead of a place to let your kids be fidgety.  When a parent turned off the volume of the service so it would not interrupt his conversation, I was done.

Done trying to get my son into a church that does not understand Special Needs.

I really think it is not that complicated, but then I do spend every day with 5 kids who have down syndrome with one of them also significantly impacted by Autism.  

Huge churches with amazing Special Needs Ministries are out there. There is an entire ministry devoted to helping church create their own Special Needs Ministry.  The Inclusive Church has an amazing website with resources.  There are churches that host special events or have respite night for families.

While special buddies or some respite and a night out would be great, all I want is to sit next to my husband during the service.  

*Not enough volunteers?  Lower the cut off age for children attending, then the volunteers are not spread so thin.  Typical 4th, 5th, and 6th grades can learn to sit through the service.

*Kids with Autism, ADD, ADHD cannot sit through the Bible story?  Stop having one.  They just sat through the songs and Scripture reading...isn't the point of Children's Church to accommodate every kid's inability to sit through and comprehend an entire sermon?  Adjust the room so that the entire setting is a Bible learning time, without having to sit and listen to a story then sit and color a picture, then go in the gym and throw balls at each other to burn off energy. This link has some great ideas, again from the Inclusive Church  http://theinclusivechurch.wordpress.com/2014/05/01/orange-conference-breakout-notes-strategies-to-include-every-child/ .  Kids with special needs are not the only ones that benefit from a hands on or sensory learning environment, especially when most of them have just sat through Sunday School.

We are not going to start church hopping until we find one that loves our kids, because the church we attend does love our kids.  It is just that Dante is hard to understand.  It is so easy to smile and greet us every Sunday morning, but when I am not holding Dante's hand and keeping him next to me, it is just harder for the smiling and nodding people to know what to do.

So Dante and I will stay home on Sunday mornings, because I know that God is good, even when I cannot sit next to my husband in church.








Tuesday, July 8, 2014

How Autism Saves Us Money

Last week Jamie and I took our 6 youngest children for a short vacation at his parent's cottage in Rumney, NH.  We have been going there for 15 years now, and this was our first time without any of the Original 3.

I am not a fan of highways, and we were making our way up on some smaller roads.  Driving across Route 2 I saw a sign for a Fiber and Knit Shoppe.  If it has the words "fiber" AND "shoppe" in its name, then it must be the real deal, not your typical big store skeins of synthetic yarn.  Jamie saw me read the sign and said,

"Not with our crew."

I do not think he was referring to our six kids traipsing in and doing a little exploring of the shelves.

No, I think what he really meant was Not with our child who has autism and will walk in, look around, and start scream-singing "Happy Birthday to You" at the top of his lungs until we get out.  At least his stress level indicator song has harmless lyrics.

Our vacation options are pretty limited.  On the plus side, there is a lot of money not spent on entertainment for the kids.  No Storyland theme park, no Gondola rides or the Hobo Train.  No eating out at Plain Jane's Diner.   No visit to the Nature Center or hiking up Rattlesnake Mountain.  No bear show or bumper boats at Clark's Trading Post.





We certainly are not going to Six Flags this Summer for the rides or the water park, but Newfound Lake was only $27, and Monday the beaches were almost empty.  Dante loved it.  And the 10 minute wait to watch this water slide blow up was SO much better than the wait we would have had for a two minute slide at a theme park. The only wait in line was behind siblings!


We were able to walk to the Snack Shack and have three meals for less than one would have cost our family at Plain Jane's Diner.


There were plenty of ants in the cracks at the tennis court.  There were lots of frogs and salamanders in the pond.  Thankfully there were no bears (trained or otherwise) on the small hike the triplets, Leif and I took...and I don't think Jamie minded staying back at the cottage with Dante with Kimberly-- when we returned they were napping and he was reading Robinson Crusoe uninterrupted.
The only bumping was the kids pushing Kimberly everywhere.  (She can be kind of pushy about that.)



We have been going to Rumney Bible Conference for our vacation for 15 years now, and while the onset of Dante's autism changed how much we do while there, it has not changed the relaxing peaceful atmosphere that we experience there every year.

Even if Dante did not have autism, and even if we had money....we would still be at Rumney each Summer.

I would just have a little bit more yarn (fiber) sitting around.




Monday, June 23, 2014

Kimmie's Good Will Tour

It all began with a carrot poked into the bunny cage.

Except it was not a carrot, it was Kimberly's finger. Sweet, smart Amelia saw that Kimberly's finger was bleeding and immediately put a cloth on it, but one look at the wound and it was clear that a trip to the Emergency Room was suddenly on the agenda.

I was supposed to be at work in an hour, so my call out went like this, "Bart, bear with me even though this will sound weird, but the rabbit bit off the top of my 2 year olds finger and we are going to the ER, so I will not be at work".  Later he admitted to me that visions of a certain rabbit from Monty Python immediately popped into his head.

Thankfully our wee bunny does not have a vicious streak a mile wide nor does he have a cave to guard, but he might be far sighted, seeing fingers as carrots.

Kimberly did not cry from the bite.  She clearly felt some discomfort though, as she walked around the waiting room at Harrington Hospital holding it aloft ET phone home style, greeting every person also there waiting.

The cutest little candy striper ever.

No one could resist smiling when she walked up, gave a long drawn out "hi", and patted each person on the knee or arm.  She left no person ungreeted.

The visit was long, the nurses were upset that she did not have all her immunizations (more on that later), but in the end her finger tip was glued back together and we were sent on our way with a prescription for antibiotics.

Unfortunately, it broke open the next morning, and after much discussion Jamie and I decided that I would take her to the Children's Emergency Room at a different hospital.

Once again she greeted everyone, finger in the air and sweet smile on her face.

I was asked FOUR times if her immunizations are up to date.  And apparently saying "no" means that I have given her no vaccinations and condemned her to every disease known.  I explained to one particular nurse that we only do one vaccine at a time.  "Does a doctor oversee this?"

Jamie was horrified when I told him that I replied, "No, I buy them on the black market and administer them myself".   He is so gullible.  "Of course a doctor oversees it!" is what I actually said.

But Kimberly was completely unaware of this controversy, and went about her business of greeting everyone.  This is a teaching hospital, so every time I am there with one of my special kids, the doctors take advantage of the opportunity to learn about Down syndrome and the related medical issues.

I am pretty sure Kimberly's heart defects have nothing to do with the skin hanging off the top of her finger.  But this nice young man actually knows her cardiologist so we had a nice discussion.

When he squatted down to get eye level with Kimberly, she squatted down too. He caught on quickly, stood up and put his hands in the air.  She did too.  Then she puckered up and clearly wanted to kiss him.

Somehow it did not come out right when I said, "Kimberly, we don't kiss strange doctors".  "Um, I mean strangers who happen to be doctors..."

So it turns out the animal bites are not supposed to be stitched or glued, because that just traps in the animal bacteria.  She is fine, the huge flap of skin will eventually fall off but she will not lose the tip of her finger.

Kimber hugged the child life specialist who promptly declared Kimber the best person ever, she charmed both doctors... one offered her a popsicle and the other a lollipop... and as she strutted out to leave she waved and said "bye bye" to everyone we passed.

My little two year old daughter who has Down syndrome ministered to more people in one weekend than most people do in a life time.



Monday, May 26, 2014

The School Year That Wasn't

I have barely found time to write here this year, and some times I have avoided it. The avoidance is a result of not wanting to sound like I am unhappy with the privilege of homeschooling my children.  However, this year has been anything but what it should have been.

Like most home school moms, I spent August preparing for the perfect school year.  Curricula purchased, routines outlined, objectives in place.  This year will go according to plan.  I know what each of the triplets needs, and Jamie is taking care of Nikita's senior year.  Leif just gets to have fun, and Kimberly has her slew of Early Intervention therapists to help me keep her on track.

Dante has been our only child in public school, and I always felt guilt about that, but with his complex needs I knew I could not home school both him and the triplets.    However he started the school year without an IEP because we had rejected it back in June as inadequate, and come September we still had not been given a new meeting date.  And he was still gluten/dairy free attending a nut free school.  And then he came home with marks on his neck from his car seat being too tight and  I was told to transport him myself until I fixed the seat to fit him.  And still we had no meeting.

So we pulled Dante out to home school, and they could not say good bye and good luck fast enough.

And so ended the year I could do it all and began the year I could not.

I once jokingly told a friend that I don't home school my kids, but rather I create an educational environment and hope something sticks.  I never knew that is what this year would be.




Bringing Dante home did not change my social life, because I do not have one. I had already stopped doing any co-ops or group activities with the kids...it is hard to be excited to go watch your kids get ostracized and be told one more time "we'd love to have your kids participate, as long as you are right there with them". They still had Special Olympics and Sunday School, plus story hour for Leif and Kimberly, and since Zachary and Nikita were still here to help watch Dante, we did get out for little field trips.

Bringing Dante home from public school did change how my time is spent each day, and despite the various routines  I have tried, the revolving door of therapist in and us going out for therapies...plus specialist appointments and family field trips...makes everything quickly fall apart.


So we have learned to do school work here and there, and often when the kids are unaware they are being taught...well unaware they are learning, since I was often with just one while the others were learning together.


Oddly enough, one of Dante's independent therapists- whom he has been seeing for several years- told me that she knows this year has been very stressful for me, but being pulled has been the best thing that ever happened to Dante (based on the progress he has made with her).

So how can I put him back in school next year?

Yet how can I not?

Alexander is in college, but Zachary and Nikita were still home to help.  Then Zachary entered the Navy in December, but Nikita is still home.

She leaves for the Navy in August.

And I will have 3 year old (in September) Kimberly, a very rambunctious 4 year old (in June) Leif, 8 year old Dante significantly impacted by autism and Down Syndrome, and "the triplets", who also have Down Syndrome.

Sure, God is with us and we can certainly do this...but is it really the way we want to go? Dante simply does not do field trips...at least not with Leif running ahead and Micah lagging behind and Kimberly in a stroller and....

I am already tired all the time...home schooling plus working 5 nights a week waitressing , plus housework, gardening, baking/cooking for the family...

So I am waiting on God's brilliant plan for us.  Perhaps Dante will be in school.  Or he can go once a week to get therapies there and that will be our field trip/doctor appointment day.  Or I can hire a teen to go on field trips with us or to stay here with Dante.  Maybe he will be home,  and walking to the playground or library will have to be enough for us next year.

I do know that the falling apart of this year's plans did not mean my kids did not learn, and spending time at the table is not a mandatory part of education.  Flash cards have worked well for teaching reading, and math is incorporated into snack time and play time.  Spending time outside is always good, and the use of iPads is a perfectly acceptable way to learn.

Whether Dante is here or at public school, next year will be the year of fun learning experiences led by Leif, he really gets the kids trying new things and using their imagination...having fun with him being 4 will be one learning experience after another for the triplets and Kimberly.  And just maybe, Dante too.


God is good, even when I am tired.

Tuesday, March 25, 2014

Cabin Fever

It is officially time for Winter to end when Dante brings me the outside parachute and puts my hand on it, indicating he wants to play.  If Dante is going to initiate something you can be darn sure I am going to go with it!!  (Clarify, something not related to his endless attempts to get food!)

It was a tight fit, but they had fun.

God is good, even in the Winter that would not end...

Friday, March 21, 2014

World Down Syndrome Day

March 21st is World Down Syndrome Day, because it is 3-21 and so is Down Syndrome! (Third copy of chromosome 21)

In order to honor the five children Jamie and I have adopted, who each have Down Syndrome, I have decided to post 21 random photos of them. 

Enjoy!

Micah getting outfitted for going on a ropes course in Virginia.

Amelia comforting her little brother when he needs her.

Three bakers making a pie.

ShanLin doing her chores.

Having afternoon tea

"Helping" on a friend's farm

This time really helping, feeding the calf

The climbing tree at the apple orchard

ShanLin feeding her baby

Amelia had an opportunity to meet an Olympic gymnast

Kimberly thinking she gets to try some coffee.  (it was empty)

Sorting and folding their own laundry

Doing their part to get the garden growing

Micah showing baby sister his medals

Micah earning his medals

Dante learning to experience new things (calmly)

Amelia walking to the Library by herself for the first time

Kimberly the Horse Whisperer

And Goat Whisperer too!

Micah learning how to use a fire extinguisher

Amelia reading to Kimberly.



And a bonus photo!  Kimberly and Leif want you to know,
God is good, ALL the time!