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.)

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.

When Special is Typical

Anyone living in the world of disability cannot help but have heard about the "typical" siblings of a disabled child.  They miss out on things because of Mom or Dad hauling the Special Kid off to yet another therapy or appointment.  They are always more compassionate than other kids, because their sibling with special needs taught them to have more patience and understanding.    

Are we supposed to be more grateful for these typical siblings, and wish we had been able to give them more attention?  I think we did a pretty good job of making sure the  "Original Three" still led typical lives, despite being saddled with special needs siblings.  Besides, they even got trips to Hong Kong and Taiwan because of the adoptions.  They're pretty compassionate, but show me any family with nine kids and you'll see a lot of love from the older ones being showered down upon the littles.

Five of our nine children have Down Syndrome.  In the realm of disabilities, I think this is pretty minor.  There has never been a lot of pitying the poor siblings going on here.  Besides, the Original Three are all grown up and moving on...although I do admit the reality that some day they may choose to care for their adult siblings.

Leif is still here though, a 4 year old completely typical boy being raised with his 5 special brothers and sisters.

Leif does not know what Down Syndrome is, or what it means for his siblings.  He does know Dante has Autism, and that it makes him different and sometimes irritating.  That's life, though.

So I guess now it falls to the oldest three-- Amelia, ShanLin, and Micah to help take care of their little brothers and sister.

Leif asked his big sister to pour him some juice.  Dante indicated to Amelia that he wanted to go out into the water, and he trusted her to take him.  Micah knew that Kimberly needed some guidance so he took her by the hand on the sidewalk.

Does this technically make them "typical" siblings?

Even Kimberly wanted to give our special Dante a toy and a pat on the head when he fell asleep on the floor.

My kids look after each other in ways that amaze me every day.

These kids are role models for each other. It made perfect sense for Leif to have Amelia do the driving when he and Dante wanted to hang out in Poppy's truck.  And when Leif asked his big brother and sister to play with him,  Micah and ShanLin were more than willing to put on some costumes and play along.  They think it's pretty cool that he's nicknamed them Iceman and Firestar.  (Amelia is Batman.)

In our house, all the kids are learning compassion, and they each get their own time too.  Amelia, ShanLin, and Micah take part in Special Olympics Gymnastics and an amazing dance class, Leif and Kimberly are each in a gymnastics class, and Dante gets to go to school every day and have boatloads of attention from his wonderful teacher and aides.

In our house everyone is typical and special, even if none of the kids living here know-- or would care-- what those words mean.

My Holiday Soap Box

7 years ago this month my Dad died.  Jamie, the kids (only 6 of them then), and I spent 5 days in a hotel, and had Thanksgiving dinner at Denny's.  I also spent several hours Thanksgiving Day visiting my Mom in the hospital.

17 months later my Mom died during Holy Week, and we spent Easter weekend at the same hotel and Easter Sunday at at the same Denny's.

3 years ago Dante had severe cellulitis in his right arm; he and I spent December 23-26 in the Hospital.

These experiences made me very grateful for eating options on a holiday, and aware of the need for community workers to work on holidays, as well as hotel staff and other things we don't think of as necessary.

Waiting tables at a Cracker Barrel, means I have to work Thanksgiving and Easter.  It really stinks to not be with family the entire day....some guests make that feeling worse, some make me thankful to be there.

When I wait on an elderly couple whose family is too far away, it is a blessing to be the one to wish them a Happy Thanksgiving.  Going out to a restaurant might be the only thing that makes their day special.

I have waited on people going to or from their own jobs that day, when preparing a meal is the last thing on their mind after the shift just finished.  And there are those traveling home from a full day with family who need a short break from all the driving and traffic.

It really burns my biscuits though to wait on large parties who simply do not feel like cooking and so they all meet up to camp out at a few tables in a restaurant.

Seriously, toss a turkey in the oven, tell everyone to bring a dish and camp out in your own living room.

And now people are shopping on Thanksgiving and making even more people required to work for our gratification??? What are we thinking???

I'd better get off my box now and finish cleaning the kitchen...we celebrated a day early since Nik and I have to work on the real Thanksgiving Day.  It was a blessing to sit at the table with 7 of my 9 kids, although we missed the two big boys.

By the way, we celebrated without our Zachary because he is in the Navy and has to work.  We will also celebrate Christmas without him (again) because he has chosen to serve our country.  Please be sure to thank those who make this choice, because it most certainly benefits you.

I am thankful for my family, and for my job.

God is good.

PS, Apparently turkey makes Dante tired...

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.

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.

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.

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...