Perfectly loved...

A little inspiration for my little people today:

"Perfect because of God's design, Righteous because of His grace, and Loved because we'll make sure of it!"

Love this... new song by Mark Schultz

Heard this for the first time on the radio the other day. Though we didn't receive a prenatal diagnosis for Brianna, I can still understand the emotions involved in this song from the perspective of a parent of a child with special needs... and even more so from the perspective of someone that has received a 'terminal' diagnosis for my daughter. Just like this song, Emma is alive and thriving despite the diagnosis that was given to her just 6 weeks after coming home in 2008! 

The connection

Remember that random money post the other day about finding a quarter?

Ok, here you go....

The quarter held value only when it was discovered, not when it was there but unknown.  It was in our home and belonged to us the entire time, yet only once we held it in our hands did it receive the true value that it innately holds.

Everyone has importance, true value!  It's just that sometimes their value is hidden and therefore given no credit until it is discovered.  It is always a part of them, but the discovery of that importance is the appearance of new value.

How's that for more randomness?

The importance of importance

Yesterday I took Micah up to Hope Haven, the Down Syndrome Clinic in Jacksonville.  He's the last of our crew to go this round (4 have already been) and it's always informational and really encouraging each time we go!  Micah was a ham, behaved well, stayed on task, did exactly as I would expect him to and more.  It's always nice to have the kids actually do well when they go to evaluations :)

This clinic is a 4 hour set of sessions with PT, OT, ST, and an educational session.  They do an evaluation then send us a report within a few weeks with all the information they got as well as suggestions to continue working on the child's strengths and to improve their weaker areas.  Yesterday I was especially focused on the educational piece, getting all the help I could to see what insight Laura Watts, the director of the center and mother of an adult son with Down syndrome, would be able to share with me about the kids' continued education and suggestions for the next season of their schooling.

After the clinic, I drove over to St. Augustine to go shopping a bit for things for the kids at the outlet center.  I ended up getting summery sandal-sneakers for several of the kids which will give them good support without making their feet super hot.  And... they're washable :)  Which makes them great for rainy spring and summer days as well.  I also picked up shirts for Easter and even a shirt for myself...

Then I had the pleasure of meeting up with my friend, R, who I've known since high school.  Though we never really hung out in school, we began having lunch regularly at our church about a year after Mike and I got married.  For the next three years we regularly had lunch once or twice a week with R when she was working in the church cafe or helping out with the school art class.  When Brianna was diagnosed with Down syndrome, R and her mom D were some of the first people that we wanted to share her diagnosis with.

R recently moved to a group home so she could have more activities and independence! She is doing great in her new surroundings and enjoyed water skiing, knee boarding, and tubing in a lake yesterday before going to a church dinner and Bible study.  They are keeping busy and she is thriving in it!

Last stop of the night (I did a lot of laps of driving!) was dinner with Kathy and Jen, two moms of little ones with Ds who I've communicated with via computer and phone for 5 years and have had the pleasure of meeting up with several times along the way as well.

Now, back to R... :)

R introduced Micah and I to the house parents and told them that Micah has Down syndrome.   He has Down syndrome "just like me, I have Down syndrome too."

That may seem like a simple statement, but to me, it was huge!  In the last 5 years I've seen a big change in R.  One of the main reasons (aside from wanting her to be able to be a part of our journey with Brianna) that we told R first is because she had, up to that time, been very resistant to any talk about Ds.  If the phrase came up, it was often met with anger or frustration from her.  To her, it was a negative thing... something not to be talked about.  A thing that made her different and that made her uncomfortable.  Something that she couldn't change or shape, but had a derogatory meaning.  The one thing holding her back from having the 'normal life' she already lived with her college age peers and her activities with the church and school.

Brianna was not "just another baby" at the church.  Though she, of course, was the world to us just like Kristopher was and each of our children after!  She also was born to two staff members...  Michael was on staff with Senior High and running that program and I was a children's minister for 5th and 6th graders.  Brianna was automatically 'known' by most of our church before she arrived and the medical difficulties she faced before we learned what her diagnosis were was something our entire church had been praying for.

Our reaction to Brianna's diagnosis of Down syndrome was pretty important.  Not just to us and our church family, but also-- I realize 5 years later-- to R.

Thankfully, God had used R to prepare us for that moment and to be very accepting of the diagnosis.  Though were concerned (which is a big understatement!) about Brianna's heart condition and need for open heart surgery, we were able to quickly put forward a positive foot with the rest of her diagnosis.

That doesn't mean that we didn't struggle with the "loss" of the child we "thought" we had.  Just like any major life-shift, we had to digest what this meant for Brianna and for our family.  We had to grieve the idea of a totally typical childhood and some of the expectations that we don't ever vocalize about a newborn, but innately are formed within our minds-- like the joy of one day seeing your child marry and have children.  That's not to say she wouldn't do those things, but my set of expectations needed a shift.  We needed to change from "of course" to "maybe."  We aren't people who like to set ourselves up to be disappointed, and holding an "of course" attitude in regards to a newborn with Down syndrome, well, it is setting yourself up for the possibility of disappointment whether intentionally or not.

There ARE some OF COURSE statements we did hold on to though:  OF COURSE your child will be beautiful, and you will love her, and she will learn how to talk and walk and be independent as much as possible.  OF COURSE she will make friends and be an active part of our family and community.  OF COURSE we will do any and everything possible to help her to achieve her own goals and push her to desire for those goals to be as large as she wants!

And so... to R, I believe our response-- and the response of our church-- was what she needed.  Within just a week of Brianna's diagnosis we were again having lunch with R when she went across the cafe and spoke with one of the other staff members.  "Did you know Brianna, Michael's baby, she has Down syndrome?  I have Down syndrome too."  We were shocked to hear it, but yes, she was talking about it!  Later that same day another church member came up to us and said "Um... I'm sorry to just ask this outright, but R is going around telling people that Brianna has Down syndrome.  Is that true?"  We laughed and said 'yes'.  It sure was...

There's another piece to all of this...  When D told R for us (because we didn't want to break down in tears and make it more difficult, after all, we were still adjusting to the idea and, well, you get the point), we were standing right there.  D knew R better than anyone, after all, she's her mom :).  D knew exactly the right words.  Words that I heard again yesterday when visiting with R.  "R, Brianna has Down syndrome, like you have Down syndrome.  And she needs a role model.  Will you be Brianna's role model?"

Yes, she would be!  She would be not just a role model to Brianna, but to Emma and Micah, and James, and now Aleksa (who I don't believe she's met).  Yesterday, R very proudly told her 'house parents' that she is Micah's and Brianna's role model :).

And now, getting back to where I was going with all of this (oops), here's the point:  R found importance in Brianna's diagnosis.  She found that the diagnosis or title wasn't something to be ashamed of, but something that (to her) a very special baby girl had, and a person that she wanted to be associated with.  It wasn't a title that brought distaste or one that made her different, but something that she had in common with a tiny person who held no negative stigma.

Not only that, the title of Down syndrome, and the conversation with her mom that day, gave R importance.  Regardless of any type of diagnosis or disability, there is something to be said about feeling important.  There is actually a lot of importance in FEELING important!

If you have a disability or a diagnosis which you think of and cringe, or you have days where you wish it didn't affect you... Maybe you have a child that struggles and feels distaste or blame toward their disability.  Maybe they or you feel different and wish it wasn't a part of life.

I challenge you to look one step further.  Find the importance.  What does that disability allow you to be, to do, to access... Who does it allow you to associate with or be like?  Is there someone you can mentor?  Someone that needs to hear your story?  Is there an organization that needs another set of hands or an advocate so you can share with other parents or kids that are walking the same road?

D and R have provided the life-experience to us that we didn't have yet on our own and we continue to learn from both of them as they share their walk and remember the times that we're going through with our kids. In that, R has also found importance in her diagnosis and in being a role model to our kids.  To her, it allowed her to accept that piece of herself which was locked up before.  To us, it allowed us to have someone to look up to and to have our kids look up to as well.

Where is your importance?  Have you discovered the gift in your diagnosis or your child's?

Life can be tough.  Tougher with added challenges that come with disabilities.  But looking for the silver lining, so to speak, can help to keep our own attitudes in check and... quite often... can help someone else in the process...

more on school

Here's a bit more on school... now that I'm calmed down a bit and have had some time to think, talk it out, pray, and stew on it :)

First off, (I'll put this at the beginning for those that don't read to the end LOL!), I have a request.  If your child has Down syndrome and is in a fully inclusive setting, or WAS in a fully inclusive setting, would you please leave me a comment or shoot me an email about how it worked for your child.  Maybe share if they had any aide, whether therapies were "push in" (in the classroom) or "pull out" (to a resource room or other area of the school), and what the experience was like for your child and family.  That would be a great help to me.

Also, if you have any links to resources about inclusive education- research based reasons WHY our kids can and SHOULD be included in the regular classroom rather than only joining in for lunch and activity.

Thanks so much!

Ok, on to where we are at.  Expect some rambling... because my mind is not all that organized still!  (will it ever be??)

Here's what we have as far as school age kids next year:

• Aleksa, 8 yrs old, expected to be placed as a 2nd grader, not currently enrolled in public school (homeschooling), and not eligible for a state-based scholarship to change schools, likely placement is a "supported level" classroom (same as Emma).
• Emma, 8 yrs old, will go up to 2nd grade next year, currently at an "out of area" school which we will call "A" via state-based scholarship in a fully self-contained supported level classroom.
• Kristopher, 7 yrs old, will go up to 2nd grade next year, typically developing and currently out of area at the same school as Emma, "A". 
• Wesley, 6 yrs old, will enroll as a kindergartener next year, not currently enrolled in public school (homeschooling), and not eligible for state-based scholarship to change schools.
• Brianna, 5 yrs old, will go up to kindergarten next year, placement still in process and a big question mark, has 3 schools possible for next year, is eligible for state-based scholarship to change schools.
• James, 4 yrs old, will stay in K-4, already determined by staffing and IEP team (he technically should go to Kindy), attends an EELP K3/4 classroom currently at "A".  Could attend any school with openings in an EELP classroom.
• Micah, 4 yrs old, will go up to K-4, attends an EELP K3/4 classroom currently at "A".  Could attend any school with openings in an EELP classroom.

Ok, we're calling the school the kids currently attend "A".  Five of the kids are currently enrolled there.  Emma is there on a state scholarship (McKay).  Kristopher is out of area and can be renewed.  Micah and James could be re-staffed to attend there.  Brianna, as of right NOW, can NOT return there because the school is closed to new McKay scholarship students (she would be new since she's 'staffed' there as a PreK but McKay'd there for Kindy) AND new Out of Area students.

This also means that Aleksa and Wesley cannot attend "A" next year as out of area, and neither of them is eligible for the McKay scholarship since they weren't enrolled in school from October to March this year (since they weren't even in the USA in October...).  

School "B" is our neighborhood school.  They have NO ex-ed services for our children, and only if the child is in full inclusion could they possibly attend there.  Kristopher could attend "B" next year, bussed from about 1/2 mile down the road where the bus already picks up the neighborhood kids (well, those that attend public school anyway...).  MY goal for Brianna, and the best placement I can see for HER would be to be completely included in Kindergarten.  I see no reason why she couldn't be!  She would need support, YES, but she could likely be a part of a regular kindy classroom without too much difficulty with minor modifications.  So Brianna could then, if her IEP is written with support for full inclusion, attend our 'home' school, "B" (or, if it was 'open', could attend the school she is at this year in an inclusion setting, school "A").

School "C" is our school's "feeder school" for children that need the supported level classroom.  I have not yet visited this school (but plan to after Wesley's surgery) but from what I know of the school, School "C" is a lower-scoring school in FCAT (testing), in school choice approval, and in several other areas.  It is not a school that I would choose for my kids to go to.  There are more behavioral issues at this school.  It is not a school that I would send Kristopher to as an out-of-area student, or Brianna to in an inclusion setting.  Next year, I would not want James and Micah coming up to this school since they mimic so many behaviors already.  It is as far away from our home as school "A" (A and B are both similar in scores and school ratings).  School "C" does not have a Pre-K for the boys.  This is where Aleksa and Emma would "flow to" since school "B" has no services for them, and... if our staffing specialist has her say in it... Brianna would as well, to be in the supported level classroom.  Of course there's possibly Wesley too, so that would be 4 of my children in ONE class at this elementary school.

There is also school "D".  School D is 30 minutes away from our home and offers the only classroom (that I'm aware of) for "profoundly mentally handicapped" kids... renamed now to be more politically correct as the "Participatory level" classroom.  It has been suggested that this classroom may be more appropriate for Wesley, which I laugh at.  He is bright, he is just physically and visually impaired... not to mention that he doesn't know the language!

So, there we have it.  Seven kids, four schools.  Have I mentioned that the age-gap between James and Micah and Emma and Aleksa is only 4 years?  Yes, we have seven kids in 4 years.  All seven kids are in Prek, Kindy, and 2nd grade.  Why should they have to go to 4 different schools?  Why can only our typical son attend at our neighborhood school?  

Then there comes another problem...  If the "powers that be" determine that six of my children should be in the assisted level classroom, then that just about FILLS the classroom!  Those are done in "primary" and "intermediate" levels, and generally are K-3 and 4-6 grades.  Sometimes, due to numbers, they are split differently such as K-1 and 2-6... which I don't think is an appropriate span for teaching, but my kids aren't being faced with a classroom with that great of a span right now so that's not really my difficulty.

My difficulty lies with this:  If my children are 2/3 of the class, or more, then what time are they getting AWAY from one another?  If they learn best all together, then why not homeschool?  If they will all go into the same class at school and be taught the same things, then I could likely do that in the home environment with even greater success because the behavioral side of things would cut down GREATLY (this is based on current and past experiences with the kids' behavior at home and at school). 

Also, I *know* that Brianna is not at the same place that Emma and Micah and James are.  Yes, they all have Down syndrome.  NO, the same school placement will not work for all four of them.  Brianna REALLY LOOKS AROUND and will behave how her peers behave.  She doesn't need an aide at church, she goes with the crowd and needs just a little direction, and would need some modification on assignments as well as a little more "directive" on them.  But learning to make a line for 5 weeks at the beginning of the school year like Emma did this year?  No, that wouldn't be appropriate.  GREAT for Emma!  Right now, it is likely to be GREAT for James and Micah.  For Brianna?  She will do much better, I believe, in a classroom working on letters and numbers and writing her name and spelling and colors and shapes and academics. 

Aleksa is somewhere in between.  She is BRIGHT, and she is likely very capable, but due to her limited exposure, right now she NEEDS what Emma is getting... It's a matter of a tough start for her, and needing to back-up and start with the basics even though she's older and 'could have' done well in the track we're trying to take with Brianna.

Wesley is an enigma.  We're seeing new exploring skills and social skills and understanding from him on almost a daily basis.  He has the orphanage and social delay, but he may or may not have any cognitive delay whatsoever.  We have NO IDEA.  You can't tell that based on his diagnosis (all children with Ds have SOME cognitive delay, mild to moderate... whereas some children with CP have NO delay and some are severely affeted...).  So he is a wait and see.  Teach and find out.  Put him in the LEAST restrictive environment to START and go from there.  I think a supported level classroom would be an appropriate start until we find out what he understands.  From there he could be mainstreamed with support if we find he is cognitively able to do that.  Or, should he all the sudden digress (haha, yes, of course I'm kidding!) then another placement may be necessary...

Could Emma, Wesley, and Aleksa all excel in the same classroom?  Right now-- probably.  The next year (2012-2013) when James and Micah move up would all 5 be appropriate in the same classroom? No way... but-- by then Aleksa and Emma would be 3rd grade and likely in the Intermediate classroom leaving Wesley, James, and Micah.  Brianna?  Doesn't fit in on either equation...

Now, how in the world do we really make this WORK in a REAL environment with the ACTUAL schools and rules and regulations and staffing specialists and test scores and teachers and counselors and and and and... I have no idea. 

I don't want to be split between two or three elementary schools.  But we may have no choice about two.  If we have to do two, will we send only some kids to school and homeschool the others?  Or will we do 2 schools and hope for the best?  If there are 3 or 4 schools in the mix we will have no choice but to pull some kids.  After all, a profound class is not appropriate for Wesley and that would be the only reason for school #4.  

More things stewing in my brain:

Is there any way to "go against" having to have children attend a school with 'worse ratings' than their home school based on the fact that their home school doesn't offer services for them?  

Is there any way to get an 'override' into a closed (full) school if it is the only one that can effectively serve your entire family's needs? 

What do we need to bring to the plate in order to 'convince' the school that full inclusion is the appropriate placement for Brianna for Kindergarten?  

And to justify placing a child that 'tests' profound into a supported classroom based on the knowledge that he has ZERO life-experiences at 6 years old but CAN learn? 

How do we meet the individual needs of all of our children if we don't have the ability to even have a small presence at any of their schools due to them being spread between multiple schools?  

How do we even get our kids TO school if we don't put them on the bus until they are 40 lbs (MY CHOICE, yes, I know they could be bussed)?  And home?  And holiday parties?  And class field trips?  And dealing with behaviors?

The list goes on... Any input?  Post-up... I'll answer questions/respond to suggestions in a later post.

We DO already have an advocate involved who is GREAT and attended this last meeting with Michael and I.  She also has a 5 yr old daughter w/ Ds so she knows right where we're at! :)

money

I found a quarter on the floor of my house and thought "gee, now I'm 25 cents richer" but in reality nothing changed, because it was there the whole time...

Wesley

In the last few days Wesley has:

• Learned to give high 5's, even up high where he has to move his hand up over his head.  He even somewhat spreads his fingers out (unfists) to give them!
• Figured out he can open the drawers of the island/cart we have in the kitchen if we park his wheelchair next to it.
• Learned how to unroll the entire roll of paper towels when parked too close to it on the end of the island!
• Saw James get in trouble for playing with the window vertical blinds from his bed and the next trip in to keep the boys from playing with them it was Wes! (his bed only overlaps the window by about 3" and it is fairly high, so he had to really try to get to them!)
• Learned how to play GENTLY with the girls' hair and continuously explored Brianna's while they were both on my lap.  She surprisingly LET him, though she occasionally turned around with an exasperated look and said WES-ley...
• Decided that he won't chew or spit on his hands NEARLY as much as he was before!!  This was pretty annoying simply because he was always soaking wet from spit... but really not a big deal.  We were constantly saying "Hands down, Wes!" though, and I haven't found myself saying it even half as often as before.
• Now LAUGHS when I say "hands down, Wes!" and puts his hands back up just to see if I'm paying attention, but doesn't put them in his mouth (well, most of the time...)
• Is BABBLING with sounds like "da--da" and opening his mouth to make sounds that are NOT whines or cries!  His whines and cries were communicating, and we understood certain sounds were certain things (like, his specific sound when he wanted another bite to eat...), but it's great to hear his VOICE coming out where he may communicate verbally with us some!
• Is using a head nod and 'no' when he's asked a question or offered food.  Mostly with food... but it's a start!  
• Is spitting out food he doesn't like!  Though this could be looked at as a nasty habit, it's actually really nice to know I'm not force feeding him something he doesn't like and him not being able to tell me that! 
• Is turning down food and drink if he's full!! WOO HOO!!  HE DOES HAVE A LIMIT!  We have allowed him to eat for just about as long as he wants to (within reason) and he still generally only finishes the same amount of food as the other kids received, though it takes him a LOT longer to eat it all.  So now he is starting to turn food or drink down when he's finished, to me that means he's full and knows there's going to be more food when he wants it.

It's been great seeing Wesley come out of his shell this week and make so many gains!  I believe he is learning the language more and more and is desiring to join in with the other kids (and make trouble! LOL).  That and just plain getting comfortable with his people, surroundings, and routines are helpful in adapting!  We still have our moments where he fusses and whines for no reason (that we know of) or that he just won't listen or keeps doing something he's not supposed to... but more so than any of that, we are seeing these little windows into his personality, his understanding, and the fact that he is, indeed, a 6 yr old little boy inside that tiny body of his :).  I can't wait to continue to get to know him!

(Yep, an update on Aleksa in the next few days too, but I'm exhausted!)

Laziness...

Today felt like just a lazy day.  We generally go to church on Sundays but today with 4 kids coughing, 2 more that don't attend the children's programs yet and I woke up not feeling great either... Michael very nicely stayed home as well rather than leave me home with 6 kids and take the 2 that can go to children's church with him.

We had cinnamon roll bites for breakfast and got a slow start getting dressed and around.  Then we got a few little things accomplished around the house and went through our hurricane list since we'd just made a fire evacuation list and... hurricane season is the next biggie.  This year we have 3 more children than last year (though James was living with us, he wasn't quite ours yet...).  And for the last 2 years we've had no threats of tropical weather even, so it's been a while (and 4 kids later...) since we've had to even think about it.  This year there are too many kids with "critical" items that we can't just run out of and make due without-- like Pediasure (James' entire diet and a supplement for Wesley and Lynae) and thickener (for James, Wesley, and Micah).

Anyway, just lazying around in the morning until lunch time, when I made a combination of leftovers from the food I made at the beginning of last week.  Then 6 kids went down for naps and the other two hung out and played with the iPad for the most part.  Michael went out to the pool to check chemicals and see what needed help out there.  I attempted to lay down for a minute but of course as soon as I did Lynae woke up.  Eventually I got all the kids up...  But the boys' room was a bit of a surprise when I went in there.  James had (very quietly) taken all the sheets off of his bed.  Micah was sound asleep on his tummy with his legs tucked under him, curled up to his pillow... with his naked hiney sticking up in the air.  Yep, no diaper.  Wesley was still sleeping as well when I went in, so James was 'freed', Micah was re-diapered (and left to go back to sleep) and Wes slept a little longer too.

I scrubbed the tile at the top of the pool all the way around today and found several areas that the grout is just about gone.  Not sure how to fix that?  Mike gets the pool department...  We also have a screen enclosure around the pool and need to replace most, if not all, of the panels in the screen... a big job.  Otherwise though we haven't been in the pool much in the last few months, it's not too bad.  No gross stuff and the chemicals have done pretty good as well.  The pool is still too cold to swim, but it's 86 most of the day, so we are hoping it will start warming up soon!  (Of course I prefer BATH WATER warm...!).

I also got a chance to scrub the kitchen floors and Mike ran to Lowe's to pick up a tub of liquid chlorine, since the pool did need some of that.  He forgot to pick up conduit, which is the one thing we've been trying to pick up for about a month!  We have three areas that we need to run electric cables that we don't want the kids to be able to pull down...

Then, of course, I had washed James, Micah, and Wesley's sheets... along with Aleksa's (Brianna climbed up there, couldn't climb down, and called to me but I didn't quite get there fast enough because apparently she had to use the restroom.... oops... yep, she wet Aleksa's bed...).  So I worked on laundry all day as well and pushed the mattress pads through quickly so I could put new sheets on before bed.  We had the last of this week's leftovers- meatloaf- for dinner, and I made some brownies today for dessert (which is just what Brianna needed to convince her to finish her meal!).  After dinner I put sheets back on beds and Mike got the kids into pajamas.  Then I did meds and teeth, and the kids went off to sleep... except two.  Brianna was doing her breathing treatment (she's one with a nasty cough with... I'm guessing... this cold we're passing along) and Kristopher gets a little later bed time than everyone else.  I, however, fell asleep in the chair and was out COLD before 8pm.

Now it's time to go back to sleep in my own bed and get a full night's sleep to try to kick this bug.  It's Spring Break, after all!  We're supposed to do fun stuff this week, not lay around feeling sick!

Outside time and spring break!

Yesterday we took the kids to a walking park that as we walked along it has different jungle gyms along the path. It runs along a river/canal and had a nice breeze! Though it was hot, it was a really nice walk. I think we probably walked three or so miles. Aleksa made it the entire way walking :). She's doing better with stamina during the day and though she was tired of walking she did a good job.

James hadn't been feeling great but yesterday he never ran a fever. Of course today Micah and Brianna both have a good cough as well. Now the trick is to keep Wesley healthy for another 10 days until his surgery... Lynae has had a cough and runny nose too, so four up and four down. Today I woke up with a scratchy throat. My mom has had it too and it seems to be making the rounds through everyone.

This week is Spring break for the kids which means no schedules and no worries about picking up anything new at school. No trying to figure out "who is well enough" or who isn't as far as school goes. Hmm... More benefits to homeschooling if we go that route...

Today we are home, no church with 4 coughing kids and 2 more that aren't ready for children's services yet...

This week we have two big appointments including a trip to the Down syndrome clinic with Micah and Wesley's Pre-op.

It's time... Revisiting our first visit to Ukraine

It's been a while. Really, that pain and memory of walking away from a child that you dreamed of, held and loved on, and in those first visits determined that she is a perfect fit for your family... Those hurts never heal. Three years later when she is sitting in my living room and eating at my table doesn't change the pain of those times. But it does help to heal it.

Right now another family is going through something very similar. Something that I held off on posting about though I've had them on my mind nonstop since the beginning of their troubles. Something that has spread like wildfire throughout the adoption and Down syndrome communities as "the first time ever" yet... It has happened before.

It happened to us.

A family has gone overseas to adopt a child, a little boy with Down syndrome. The officials denied their adoption based solely on the fact that he has Ds and is "socially unadaptable due to his medical needs". Sound familiar? We were denied Aleksa's adoption due to her disability in 2008. It was recorded as being due to her inability to make contact and determine her own desires to have a family or not. It was determined by officials that her life was to be lived out inside the mental institution where she would never knew the love of a family or the experiences of life outside of that facility. She would live every day watching television sitting on benches that lines the walls of the room. Waiting to interact with the missionaries that come as they can to bring stories and music and puppet shows...

Another family has gone now, to another Eastern European country to adopt the son of their hearts and the judge denied their adoption. He, now, has the determination that he should spend the rest of his days in an institution without any of the outside joys that life can provide him with... And without the love of a mother and father...

Please pray for this family! For the judge, for the officials, for the lawyer representing the family. For little Kirill... Who has a light in his eyes as he rushes over to hug his mommy... That they won't have to experience what it's like to walk away forever... That they can go back to the place they left their heart and bring their son home NOW!

I will try to post a link to a quick YouTube video later, but I can't seem to get it working at the moment (copying a link). If anyone wants to post the link in comments please feel free.

Pray for the Davis family and little Kirill. We felt your prayers so heav
Ily covering us during both of our adoption trips and we know that God has a plan for this family and child as well. They are the history makers...

Fire

Apparently NOW is a good time to make a fire evacuation list.

We just got called home from date night because there are fires threatening our neighborhood. The other end of our street is already locked down from access, but we were able to get home ok (and seriously, what police officer is going to take one look at a family picture and keep us from going home when they hear ALL THOSE KIDS are with a babysitter...lol).

So, time for evacuation stuff to go by the front door in case we get a knock at an inopportune hour and are told we have 10 minutes to get out. Kindof hard to leave with 10 people in 10 minutes if we don't plan ahead!

Please pray for safety for our area! It is very dry and this fire is VERY close to a lot of homes including our own and Mike's parents'. Thanks!

To blog or not to blog...

After a day like today, I wonder whether I should sit down and write it all out or just stick it away in the 'never to access again' files. No... I will blog. Probably. And when I'm done I'll decide if I will actually publish it or not.

Short story: good meeting with RR this morning and then a meeting at the school which wasn't awful but wasn't great. I was surprised by a few things and not by others. In general I am more educated as far as what our trouble areas area and what potential combinations there may be to be able to make things work. And yet still no solutions which actually solve all the difficulties.

Main issue: we have 6 special needs students all needing to be educated and no school can accommodate all of them.
General answer we could fight for: accommodate them all at their home school, as many as possible in inclusive educational classrooms.
Reality that we are instead heading for: educate them all within the same building in educationally appropriate settings.

Apparently that isn't possible. And that's just plain sad...

More later, when I have more of my thoughts together. Things like the staffing specialist that literally laughed and said "you can't be serious" when I mentioned full inclusion for Brianna, and the look I received from her when she asked if I had considered keeping some of there kids home again next year too (meaning Aleksa and Wesley)and I answered "I'm considering keeping 6 of them home" as her jaw dropped.

Yes, it was an interesting meeting. Time for a relaxing evening out with my husband after speech...

Today started

Today started with a sleepy little girl who coughed on and off all night spitting up her morning drink. Then, she poured a mug of water on my lap. James' fever is gone but he is coughing a little. Otherwise happy and he wanted nothing more than to eat first thing this morning... Always a good sign. And no spIt up from him which is another good sign.

Wesley has discovered he can open the drawers on tahr kitchen island when i put his wheelchair too close and he's enjoying that immensely!

Now that Lynae has already been changed once after spitting up, I guess it's time for my second outfit for the day... And it isn't even 9 am yet :)

The rest of the day :)

So the entire day wasn't just one of frustration... We had a good rest of the morning and lunch, and the kids napped a bit except for Aleksa. Then we went and picked up the other 5 kids from school. James appears to be sick... No idea with what, but he was just laying around and running a fever. Despite the fever, we had company coming over any minute and needed a quick run to the grocery store to pick up burgers and buns...

So I made my first grocery run with 8 little people in tow. You'd have thought there was a band playing and that they kids were all wearing face paint and costumes by the looks some people gave us as we walked through the store. In fact, one guy even handed me his change (?????? What was that about???? And yes it was literally change... Like, less than a dollar and I didn't even take it from him then he stuck it in my bag...). I guess one person with a triple stroller and three kids walking and a baby and another child in the shopping cart isn't just an everyday sight in our small town. Oh well, I needed groceries and the kids were all great!

We went back to the house and got James some meeds. He wanted just to lay down so he actually spent the afternoon laying in bed and sleeping on and off. Definitely wasn't feeling good in that regard. Our friends came down to spend the week nearby for spring break and I was glad to finally meet them all! We have been friends online for about 4 years and I met just Cathy last summer but only for a very brief minute in a hallway. Today we got to meet the entire crew including their sweet 7 yr old son who happens to have Down syndrome! What a beautiful family! We enjoyed our time just hanging out here at the house and... Eating burgers :)

Wesley was surprising today! On sunday during church he wanted to talk! He usually makes fussing sounds and whiney sounds but doesn't attempt to talk in any syllable sounds. As of Sunday, he has been making dada sounds and other similar sounds. He's opening his mouth with the intention of using his voice rather than just whines. Yay! We thought this was quite a ways down the road still and area encouraged by his quick progress on that!

The kids went down for bed nicely and the evening has been pretty quiet so far.

Tomorrow I have a meeting at 9:30 from home and another at 12 at the elementary school. Not exactly sure what the second meeting is going to try to accomplish, but it is supposed to be the first step of figuring out schooling for next year for the kids and what schools they will attend, etc. Tomorrow afternoon is speech therapy for Aleksa, James (if he's up to it) and Micah, and then Michael and I are going OUT. ALONE. :)

*banging head against wall*

Sometimes I think we're going forward pretty quickly with Miss Aleksa.  Other times it's like we're just taking babysteps forward and LEAPS backward!

Today has been... the latter :)

We worked on colors again today-- brought out the counting bears and sorted them into cups by color.  The cups are the same color as the bears... should be a basic concept of sorting with the added benefit of continuing to learn the three basic colors.  Red, blue, yellow, red, blue, yellow, red, red, red, red, red, blue blue, blue, blue.... yeah, you get the idea.  That's what we did for about 45 minutes today (ok, not 45 minutes straight...).  And by the end?  Aleksa still had NO idea why we were putting them in different cups, why each one went in the one that they did and not the others, and hadn't caught on to the color names whatsoever.  Everything is "Lell" which is her version of yellow, the only one of the three colors she would attempt to imitate.

I know-- repetition, repetition, repetition... and I can do that!  Repetition really doesn't even bother me.  We could do this for the next 3 weeks, every day, for 45 minutes, and I'm pretty sure it wouldn't bother me a single bit.

Actually, what is SAD and FRUSTRATING at the same time, is that every single time that I hand Aleksa a bear and say the name of it, she sits and stares at me.  Even after we'd been doing the activity for such a long time and then a break and then came back... from the very beginning she would take the bear and sit there.  She wouldn't look at it, look at the cups, look at me.  So I'd show her the bear, make her look toward it, say its name, and point toward the cups.  She'd put it ABOVE a cup and sit there holding it.  Using the same words every time "Put it in" became this chanted mantra around here.  She wouldn't release the bear.

Then, when I went to have her release it, she'd scream.  Yep, like I was pinching her or burning her... THAT kind of scream.  But really, I was just trying to help her release the bear so we could go to the next one.  Each time she got it right (even after 2 or 3 or 4 tries... yes, there were only 3 cups...) then I'd give her a fruit loop.  I learned quickly at the beginning that she had NO motivation to do this and didn't want to try in the least.  She was distracted and staring to space rather than doing what I was helping her to do.  She couldn't care less.

When food came out, THEN she listened... a little.  In the end I sent her to sit and color (with red yellow and blue crayons) at the kitchen table because I was tired of 1- her screaming during every single match, and 2- her not caring or trying to figure out what we were doing.

Yes, I realize that is totally a lack of patience on my part, but goodness, we've done this many times, and I thought it would at least be starting to sink in a little by now!

In other areas Aleksa has been exerting her independence as well, and showing us that she understands more English as well as that she is more comfortable around us and at her new home.  She has been 'exploring' other areas of the house which aren't where she usually is told to be.  The kitchen, living room, closet room, guest room, and boys' bedroom.  She's also been manipulating and attempting to get other kids in trouble!

Several times now she's picked up someone else's glasses and brought them to me while pointing at the other kid and yelling!  She wants me to put them back on and she stomps and pouts if they don't get in trouble!  She takes her OWN glasses off and throws them half way up the car or hides them in the toy box... but if someone else takes them off, they should get in BIG trouble...

Just yesterday I brought Aleksa, Wesley, and Micah to the pediatrician. Aleksa was told 3 or 4 times in a row not to touch the iPad, that it was playing a book and that would stop it.  She kept doing it.  I kept putting her hands away from it and saying 'no.'  I looked away to do something with Wesley and saw her grab Micah's hand out of the corner of my eye.  She put HIS hand on the iPad!  I told HER no, again, and Micah too.  She did it two more times, using his hand, and would wait until I was involved in something else in the room to do it, but I saw her do it each time!

At nap times Aleksa is "being nice" and is throwing any toys she finds around the bedroom into Lynae's crib.  So all the toys have left that bedroom...  She's on the top bunk, but if I don't follow her in to bed and make sure she goes right up, then she sits and gets into stuff.

Aleksa is SMART.  She has figured her way around "in the system" and survived three years in a mental institution and five years in an orphanage in Ukraine.  She knows how to manipulate VERY well!  She also knows how to freak out to try to get someone to stop doing whatever they may be doing which she doesn't want.  That is a GOOD thing when it comes to kids taking her toy or hurting her!  I'm sure it came into play with food, too, in her former settings.  Now, however, she screams if someone looks at her toy (or she just gives them to them... she goes back and forth on that...).  She screams if you take her hand to get her to do something, or if you lead her to do something (for instance taking her upper arm instead of her hand when directing her toward the 'right' answer on an activity).

So, this morning between getting nowhere fast with colors and sorting, and having her scream at every instance when she was being redirected, it really felt like I was just banging my head against a wall!

I know "this too shall pass" and she will figure out what we're saying and most likely will learn English and will catch on to more of the verbal parts of what's going on, thus understanding more... We know that eventually she'll learn to both trust us and respect us, because those are two major things that we work on with our 'new' kids.  But right now, we haven't got her trust, her respect, or more than 20 seconds of eye contact.  One of these days...  And until then, I'll just keep plugging on...

The run around

This month has been rough on us when trying to fill prescriptions.  For starters, we have 3 kids each on one daily med, and 1 child on 5 daily meds.  We also have 4 other meds filled as needed for the kids.  Thankfully 2 of those are over the counter.  That means I don't have to deal with a pharmacy!!

At the beginning of March we tried to refill a script for one of the kids and we were told it was out of stock, and they could transfer our script to a store the next town north, about 30 minute drive from us, and we could get it that day.  At that time there were AWFUL fires up there and many of the roads were closed.  We were also attempting to leave for Philly for the wedding and didn't want to get stuck for hours in traffic.  We said to just fill it at our home store when they got it in, and we left for vacation.

On our way home we got a text that our prescription was ready.  The next day we got a phone message that our script would be put back into inventory if we didn't pick it up.  So I went to the store.  But it hadn't been filled there, they had (even tho I asked them not to...) transferred our script to the store 30 minutes away.  So we didn't get it.

I wasn't able to make the drive that day, so it was another day before I could go up to the other store to get it.  In the meantime we got another 'reminder' text that our prescription was ready.  Before driving to the store, I called to be sure it's in.  They said no, they hadn't ever filled it.  (WHO HAD??).  But, they said they have the med and could fill it, but it would take about an hour.  No problem, I was 30 minutes away anyway!  So we went to the bank and meandered our way up to the pharmacy.

At the drive through they said they didn't fill it because I'd just picked it up the week before.  Really??  Because I had BEEN there to get it, but it wasn't there-- at the other store!  And I certainly hadn't been to that store.  So they said they had to call our insurance and get it figured out...  I said "Ok, I'll wait 15 minutes, I'll be parked in the lot with my kids and I'll be back through the drive through."

Twenty minutes came and went and I went back to the drive through window.  Oh, yes, they JUST got confirmation from insurance and would begin processing it now.  Another 15 minutes please.   "Sure."  And we went to park again.  On my way pulling away, though, I noticed a sign that said "free next day delivery, North area" (including our area).  Hmm... WHY did I have to drive 30 minutes and sit for 40 if they could deliver to my house??

Fifteen minutes later I pulled up again and asked about the delivery.  They assured me it's simple and guaranteed to be delivered between 9 and 1 the next business day.  Interesting.  THEN they went to 'mix' the script since, I guess, they were waiting for me to pull up to mix it?? No idea, since they knew I was sitting in the parking lot!  So we waited again..

Now, fast forward to this week.  On Friday I called the pharmacy and said I want to have some scripts delivered.  I told them which ones and noted who and gave them information to bill to my credit card for them.  They would be delivered on Monday between 9 and 1.  You get where this is going, right?

So... today, although I brought Lynae to the doctor's, SOMEONE was at my house all day.  Until 1:45 when I left to go get the kids from school.  No prescription delivery.

My cell phone got left out (attempting to dry...) and I decided instead of driving home after school that I'd go use my parents' phone to call the pharmacy.  I called.  I was transferred around and ended up being connected with a store in Mesa.  I don't know WHERE Mesa is, but it's not in my hometown, I can assure you!

So my mom got in the car and we drove 30 minutes to the pharmacy and she waited in the car with the kids while I went in to see what in the world happened to our prescriptions.  After all, I needed on TONIGHT for Micah, because he already only got 1/2 dose (it's liquid) of his this morning since it was at the end...

45 minutes later, I walked out having been handed the scripts I needed for today and reassured that this has never happened before and would never happen again... and I'd be getting my scripts delivered tonight sometime AS WELL as the ones that he gave me.  It's now 4:45, and...?  Nothing.

Somehow I don't think it's supposed to be this difficult to get prescriptions!  Seriously, it should be a matter of dropping off a piece of paper (or calling in a refill) and picking it up at a drive through window.  It really shouldn't require hours in the car and multiple trips through the drive through!

Kristopher asked why we were at the Pharmacy AGAIN... Mom said "because they're not competent!" LOL.  He learned a new word today :).

So... if you're local and have a pharmacy that you're HAPPY WITH, that has a drive through and good hours, and seems to be competent (hee hee), please do share :).  Even better if they have a delivery service... that really actually delivers!

Food!

Today I brought Lynae to the doctor for her 18 month checkup. She's still a little peanut, weighing in at 18 lbs 13 oz, but she is healthy and doing well! We tested her hemoglobin levels as well and they are at the low end of normal, but they are normal! Which is great!

After that little adventure we went to the grocery store since we were only two and my mom was home with two more. I got dinners for the week and refreshed our supply of milk (6 gallons).

When I got home, I started in cooking dinners for the week. I realized this past week that when I don't cook ahead, I dont cook... So last week, I didn't do so good cooking. In fact, we ordered out several times, ate frozen meals a few times, and we ate leftovers the rrest of the week!

So, today I made a meatloaf which hopefully will make two dinners this week. I also missed out on corned beef and cabbage for St. Patrick's day so I made a corned beef brisket as well. Some steamed carrots and a big pot of pasta (which oops got over cooked!) are ready and I have a cabbage ready for the night we have that for supper.

That should be 5 dinners this week! Now I only have to put together one or two meals, since Mike has softball on Friday and we'll probably grab food on our way out there this week. If we actually make it out :)

Off to pick up kids from school!

Cell phone

My cell phone had a most unfortunate run in with a bottle of water.  We're still trying to find out whether it got its sea legs or whether it has instead been buried at sea.  If you're trying to get me and don't get ahold of me on my cell, please try calling the house.  We have caller ID so as long as it rings (and doesn't go straight to voicemail) then I'll be able to see that you called.  Of course a message is always handy if you want a call back :)

Now here's hoping my little SmartPhone really IS smart and can recover from its bath...

Happy World Down Syndrome Day!!

Today is World Down Syndrome Day!

Down syndrome is characterized by an extra 21st chromosome, also called Trisomy 21.  In short, it's written 3-21!  So today, March 21, or 3-21, we celebrate our children with Trisomy 21!

Enjoy the video!!  You might recognize a few little people in there :)



PS: Yes, you'll see more than one pic of one of the kids, and none of others... but, that's the way life goes ;)

Busch Gardens Pictures!

Ok,enough of that... back to our regularly scheduled posts, and of course... pictures are a necessity! :)

Here's some pictures from our time at Busch Gardens on Tuesday!  Just Brianna and James went, and we visited James' "Mama Ruth" and "Aunt Megan" along with baby Maddie... just 5 weeks old :).