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.

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...

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.

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.

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.

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.

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!