Wednesday, February 29, 2012

A brand new adventure...

I've learned to live one day at a time.  Not because tomorrow's something to be feared or not to be planned for, but because if you cannot enjoy TODAY, then looking for tomorrow will do no good.

In the same sense, looking out thirty or fifty years is absolutely necessary to plan for our future and for our children, however looking forward 6 months to plan for our immediate is far enough. 

In six months I will be a 30 year old mother of nine with six children with special needs.  That's a wonderful blessing in itself!  In addition I will be the 'lead teacher' for my classroom of seven children ages 3-10, six with special needs.  Yes, those are our very own kids... who we will be homeschooling!  Kristopher will continue traditional school and I have no doubt that in 6 months I will still be a happily married wife to my wonderful husband :).

Six months is enough to look out to.  Looking further than that on a regular basis will make me a bit cross eyed and may begin to hyperventilate!!  

Our homeschooling adventure began this past September with Brianna and will broaden on Monday when 3 more of our children begin their home education.  James, Micah, and Kristopher will finish out this year in public school. 

What a wonderful and FRIGHTENING time this is.  We're so very glad to be walking the path that God's led us on, even if it appears to be along the side of a cliff.  We've walked that cliff-side before and with God's guidance we never have to fear the edge.  

Jeremiah 29:11 "For I know the plans I have for you," said the Lord.  "Plans to prosper you and not to harm you.  Plans to give you hope and a future."  

Philippians 4:13  "I can do all things through Christ who gives me strength."

We've been contemplating this for quite some time.  Now's the time that God said "GO."  He's faithful to provide at the same time, and we have a complete curriculum ready to go thanks to a good friend.  We also have support for upcoming appointments such as field trips for our other children so that we can continue to be active with them while our other kids are adequately cared for.

It's a brand new, scary, and wonderful adventure that God's taking us on.  One day at a time.  Enjoying each moment, but knowing that at the end of a rough day... there's usually a brand new one waiting for us on the other side :)

Thursday, February 23, 2012

Anyone have experience with this?

We're running in to some more closed doors as far as finding out if/what is going on with our oldest and newest child, Aleksa.  There are tons of cues throughout EVERY day that suggest that she isn't hearing well.  She won't respond when in a different room, even just 10 feet away from us, unless it is said VERY LOUDLY to her... and then we're still not sure she's hearing WHAT we're saying, just is taking a cue that us yelling to her with her name attached (she does respond well to her name) means that she should do something.  She also can look at us while we tell her something that we know she understands, like "take your shoes off" and sometimes will do it (generally this is when it's inside of her realm of a routine), but just as often will sit and look at us with a confused look on her face.  We can say it over and over, but until we LOOK at her shoes, sign "shoes off" or point to her shoes, something that physically signals what we're asking, she doesn't appear to hear what we're saying.

It's strange, because some days she may do exceptionally well with minimal amounts of physical signing, pointing, and direct hands-on prompting necessary.  Other days, it seems she doesn't hear anything all day long.  It's also difficult because she has VERY GOOD adaptive behavior.  Imagine this scenario: You're 5 years old and someone drives you to a new "place to live" and drops you off with 80 other children all of whom are older than you (you used to be the oldest in your small group of kids you lived with) and many are as old as your previous caretakers.  You quickly find that someone will physically punish you for not following "the crowd" and doing what everyone else is doing.  So you figure out pretty quickly that when you see everyone going to do something that you, too, should go do it.  You learn that when someone gives you a direction, even one you don't understand at all, that you look around and try to figure out what they're referring to, and if you can do something-- anything-- you try it.  This was Aleksa's reality in the institution.  You conform, figure out the routines, and if someone directs something at you, you try to figure out what they meant.

In new situations, though Aleksa will also frequently try to get away with whatever she can... she tends to try to figure out what wo't get her in trouble.  She WANTS to understand.  She LIKES to help.  She will, when in a mood to do it, TRY to please at all cost.  However she will also look at us and be obviously searching to try to figure out what we're saying... and be unable to even when it is a very simple direction that she knows how to do and was able to do a day or two prior...

So... everything points to hearing.  Problem being, She has had an OAE that she failed.  Then she failed the Tympanogram in an "unusual pattern" and the ENT asked if we wanted to try tubes in her ears.  We said YES, if that could be the issue, let's take care of it by all means.  She got tubes.  Nothing has improved (and that was a month ago...).  She also had an ABR done while she was sedated.  The ABR showed "normal to low-normal hearing with her left being a little worse than her right".  The doctor said that's fine, shouldn't be any big deal, and come back again in 6 weeks for another OAE and exam.  We saw him this morning.

I asked his opinion of what he thinks her response, or lack of response more appropriately, was due to.  I will share his answer, then I'll share what he appeared to be saying :).  He said that it's probably just auditory processing and they can't test that in a nonverbal child, so there's nothing else we can do.  What he's implied in the past and appeared to be saying this time as well was this: Your child is mentally retarded and can't process words because of it.  She's not going to learn to, so why are you wasting your time?

I understand auditory processing.  One of my siblings has issues with it and has had to overcome a lot to be able to do well in some areas, but as he went through school with this "learning disability" as it's termed, he also was in the gifted student program.  Auditory processing has little to do with cognition or ability to think.  It is a real and diagnosed processing difficulty that occurs in people of ALL levels of intelligence.

I'm not trying to pretend that Aleksa isn't severely delayed.  I'll be the first to tell you that she is very delayed, and that she had no one really talk TO her or have expectations of her on any regular basis for 8 years of her life.  She has not only a lot of baggage from past hurts and neglect, etc, but she also has a true lack of exposure.  Could that be the reasoning?

Here's where we're struggling right now... we KNOW that Aleksa is very physically capable. She can dress and undress, toilet independently, eat with different utensils (maybe not super clean, but still...) and can "follow the crowd" really well when she's being properly motivated and understands that there is an authority person there.  She knows how to play appropriately with some toys and does great with routines such as putting her clothes and night time diaper away in the trash and hamper in the morning, or coming to the table and waiting to pray, helping other kids to do simple tasks like  putting toys away or going up or down a step (even though she herself isn't very stable most of the time...).  We know that there are physical limitations that are just from a lack of exposure for so long, and cognitive and "higher order thinking" that are affected both by Ds and by her past.  There shouldn't be significant language limitations at this point (14 months home) however we still use very BASIC terms with her when making requests so that we're sure that we are using words and terms that she understands, and very short sentences, etc.

We don't want to "pass this off" as just a behavior, an attention thing (sometimes it may be, but sometimes she is distraught at not getting it and really is TRYING to understand), or a lack of ability to comprehend unless we have looked at all the other possible causes that it could be.  As far as auditory processing goes, she would have to have SEVERE issues with auditory processing to be having as much difficulty as she is with all of this!  APD generally has ways to 'train' the brain to understand, and is often a first and last thing dropped, that sort of thing, not two or three words that someone simply cannot hear/understand/something...

Since it all is acting just like she can't hear... but her hearing tests appear to say that she CAN... what else could the problem be?  She's so frustrated.  As are we!  She only mimics sounds/2 syllable rhythms (mama, bah bah (for bye bye), etc) when she has SEEN our face, or knows the social appropriateness since we've taught her (say "hi", say "bye" while having her look at our mouth and try to make the words).  SOMETIMES she will mimic a 'random' sound.  Not often.

There's so much more... but that's all for now.  Would be very interested to hear what others have experienced in a similar matter... Thanks!

Monday, February 20, 2012

The after-bath lineup...

Where everyone's diapers and pjs are out and waiting for little people to fill them!  And even better... All our pull-up wearers now dress themselves completely, and our diapered crew just needs help getting their arms in!!  We've all been working hard!

Organizing Life

The last two weeks I've been slowly starting to feel better! YAY!  I'm still not quite up to par, especially in the mornings and late at night, but hey, if I can have most of the day that's a pretty good start :).

Now that I'm feeling better, I'm looking around going YIKES! LOL!  So many things I haven't done because I haven't had the energy or the time, but now need to be done!  We've got a big project starting in the next few weeks, and we need to prepare the house for that to start.  Right as that project is finishing, it will be SUMMERTIME!  With summer means summertime activities, and for us it means starting up school activities at home too!  On the tail end of summer will come the birth of our 9th child :).  And when I write it that way, instead of being 22 weeks before the baby will be here (2 weeks early... scheduled c-section by necessity...), it feels like it will be more like 8!  And of course after that is another 8 weeks of recovery that I have to think about beforehand.  I know there's plenty more time, but I've realized that I need to get life a little more organized or I'll be going nuts pretty soon :)!

First off... our first project!  We are very excited to be able to add a bedroom and a handicap bathroom on to our home!  In actuality, we will be renovating an existing bedroom and changing it in to the handicap bathroom as well as a hallway, and the new construction will consist of a bedroom and a 'study' (no closet).  We currently have 3 bedrooms that the kids share, and this will give us a 4th.  It will also give both Wesley (and us!!) and Emma much more usability of the bathroom with a little more independence.  Right now, Emma cannot get on or off of a toilet on her own.  The new bathroom will have rails and our existing step to use for getting on and off the toilet.  Showering Wesley can sometimes be a sport, and as he grows it will be even more of a blessing to have a roll-in shower with a very open design.  We will be looking for a toileting system that can hold Wesley up on the toilet as well, since he can neither sit nor support himself on the toilet with his hands.  We hope he may be able to have some degree of toilet training once that's even an option.

The thing I'm thinking Wesley will appreciate the most is a SINK that we can roll his wheelchair up to!  Wesley has never been able to wash his hands in a sink unless he's being 'dangled' over it!  We hope he will be able to access the sink from his wheelchair and actually WASH them for himself!  I realize that sounds minor and petty, but in his world of dependence, every little bit of 'normalcy' and independence is a HUGE step forward!  Construction begins early March and should be completed by mid-late May.  We've been working through this concept for months now, and are so thankful it's all coming together now!

To prepare for the construction, we'll be losing a bedroom until it's complete, and we'll be losing a bathroom for some of the time (they will tie in to the plumbing in our existing bathroom so will have to tear it up, all the walls and flooring).  Some of the kids will have a 'temporary' bedroom in our play room.  Should be simple, right?  Not exactly... We don't have any blinds in our playroom, and it's got HUGE floor to ceiling windows!  In addition, we will have to disassemble two bunk beds (one is going to a different bedroom, the other relocating to the playroom), and a crib (toddler bed) to move them to the new locations.  Not exactly a quick endeavor... but one that will be well worth it in the end!!

As the construction winds down, our summer planning will all be coming to a head!  We've always "homeschooled" the kids during the summer after determining that the summer program at school (we did it once...) wasn't exactly going to help the kids since it was often new teachers, new classrooms, and possibly even a new school...  This year we'll be doing more formal homeschooling (as formal as you can get in the summer and with 8 kids!) during June and July.  More like what I do with Brianna on a regular basis... but x7 or 8!  Kristopher doesn't need it nearly as much as the other kids, but inevitably we'll be doing activities for him as well :).

Throughout the summer months we'll also be prepping for our new little one to join us, and therefore prepping for the 8 weeks of recovery time after the c-section.  It will be a little more interesting this time around since we now are blessed with a little man that happens to be completely immobile and total-care.  It will mean more planning and more resourcefulness required on my part.  I'm up for the challenge... :)

As August dawns, there are, of course, more things already in the works during my recovery time and for the months after as well... but for now I'm focusing on the construction and the summer!  And the whole "spring cleaning" idea that really is necessary right now :).

Tuesday, February 14, 2012

A "Special Needs" Valentine's Day...

I don't mean to be a downer on the day of celebration, but I'm afraid this is one of those posts.  It's been a great day, a day not so out of the ordinary except that the kids are wearing clothes that might lean more toward reds and pinks than 'normal' and there was a party at school.  Our younger two girls and our older son all enjoyed the parties, and the little girls came home and looked at the little cards, separated out the candies, and had a fun time at "Daddy Love Lunch" with their dad today!

But we have 5 more kids... Five kids whose needs are more significant than some and who have a totally different kind of day on Valentine's Day.  It happens with other celebration days as well, but those generally have more educational or spiritual value than Valentine's Day, so there's some net worth in the difficulties they have to overcome.

For my 5 little ones with special needs that go to school today was an ordinary start to the day.  As painstaking as it was for ME to have to write out 58 valentine's cards that said "To My friend From (Aleksa, Emma, Welsey, James, or Micah-- and I did Lynae and Brianna's as well),"  The idea of having the kids participate in this activity would need to have been started weeks ago since none of the 5 can write a letter independently, much less entire names or words.  So I filled out the cards to friends and I put them all in their backpacks, ready for the day.

The kids were dressed a little more in the lines of pinks and reds than any ordinary day, and of course we woke with "Happy Valentine's Day!"... but otherwise the day was much like any other before school.

Our kids have great teachers that truly DO start weeks in advance at times in preparing things like crafts for the kids to do, and I'm sure that the kids enjoyed school both today and in the days leading up.  I'm sure they found it fun to pass out the little cards that I'd prepped for their day (presuming that the teachers had the students hand them out...).  And they were truly excited when they saw that they had that same bag/box in their backpack when we got home today.

Then we sit down at the table and the day goes on... And this is where the scrooge of Valentine's Day in me comes out, I suppose.  It's a time when I look at the things dumped out in front of each child.  I quickly pull the candy out of Micah and James' bags since it is either hard or gummy, neither of which they can eat.  Then I look on to Emma, Micah, and Aleksa's piles and notice the squished mini cupcakes with icing mushed in to a ziplock baggie.  No name for who it's from, not idea what's in it.  Those are the next to go.  I believe most parents in their class would cook a great sweet treat for the kids.  Others would likely try to poison them :).  We just won't go there.  Then we remove the pencils that have already become sticks to hit one another with, and the erasers that are quickly about to be mistaken for candy.

What Micah and James are left with is a pile of little folded papers with pictures on them and names scribbled on by hurried parents.  Aleksa and Emma still have a mountain of candy along with their papers.  Wesley's whole bounty is sitting there because he doesn't really care one way or another and I haven't needed to confiscate from him yet because of that.  If they had their way, I'm sure the girls would have eaten every piece of food in front of them (and the erasers, and the packaging) if I'd let them, but we really don't let the kids have much sugar.  Especially those that have attention and/or behavior issues...

So, I open one package of candy and spread it out among the kids that can have some.  The rest goes to the refrigerator drawer to be eaten by hungry visitors and otherwise to wait to be purged again around Easter.  The kids take one glance at the pile of cards and decide they're done.  They left the table and I realized that not only are the little cards pretty useless, but all of the candy and food that they brought home from school will most likely go to waste.  The idea of the holiday is wrapped around children that can eat without restrictions, that can read and recognize common characters and pictures, and who understand the idea of giving the cards to friends.  My 5 children with Down syndrome have no ability to do any of those things.

It's almost like giving a 2 year old an adult bicycle without training wheels for Christmas.  OOOOHHHH!! SO FUN!  Then they realize all they can do is look at it, and the perspective changes to uuuuuuhhhhh..... not that!!!!!!!!!

My more involved special needs kids aren't disappointed.  They don't realize that other kids can eat the candies, or can play with tiny toys, or that the little papers are supposed to be neat things from friends at school.  They enjoyed the momentary time of getting and giving, then they came home and saw it... and are done.  Their teachers made it fun

Yes, those that have the ability to eat the candy will eat a small amount over the next few days as appropriate.  But otherwise, the idea of a "School Valentine's Day" is lost on them... and it's back to being just another day...

Now the kids are having a blast with the windows open in the playroom, swinging and playing with music on and dancing around... this is what a Special Needs Valentine's Day should be :).  Regardless of whether it centers around hearts and candies and a naked baby armed with a bow and arrow... :)

Wednesday, February 01, 2012

A new way to follow...

If you're interested in following along on our blog, but don't check in online all that often, you can put your email address in the "follow by email" box on the right side column and you'll receive posts by email.  It sends them out several hours later, but hey... you don't have to come by the blog :)

New Month, New Beginnings...

It's February 1st, a new month, and several new beginnings :).

On January 30th, my brother became a daddy for the first time!  David and Erin had beautiful Sophia Harmony Pocock just before 11 after a quick labor and delivery.  Michael and I are also an aunt and uncle for the first time!

This month is a month of birthdays in our house!  Wesley will be 7, Kristopher will be 8, and Emma will be 9!  Our new line-up will last from February until late July when the new baby is born...  The kids will be 9, 9, 8, 7, 6, 5, 5, and 2!

The weather here has been BEAUTIFUL.  It's been in the mid-70's for a few weeks.  Great time for playing outside, leaving the windows open, and cleaning house.

And on that note, though I'm still nauseous pretty much all day every day... I am starting to get more energy as I get in to the second trimester!  Time to make up for some of the stuff I've been really slacking on the last few months.  In between being sick, I'm not falling over tired the last couple days.  Things are looking up in that regard!

Several other things in the air that we've been working on as well, and I'm looking forward to a good month, a new and more productive month, and hopefully one filled with more energy... and maybe even waning off on the sickness :)