Pity Party

I know it's Friday.

And I usually like to send you off with something happy and fun for the weekend ahead.

But I'm feeling a little bit sorry for myself and I'm wondering if you'll just indulge me; allow me to ramble on for this post and get some things off my chest.

I think all of you know that Lily started kindergarten this week.  The teachers are great.  The principal is wonderful.  There's just a sweet atmosphere surrounding the elementary school and I'm really happy that we chose this option for Lily.

I'm expecting some great big things this year.

And really, Lily's already had some quite amazing moments, even in this first week.  For example, my partially potty trained child stayed dry for two days, using the potty like a champ.  In about 20 minutes, she mastered using her PECS "yes" and "no" cards to answer questions.  She helped her Life Skills teacher do calendar time with the class and loved every minute of it.  She went on the playground and had some awesome social interaction with some typical kindergarten girls who were all too happy to learn how to use the PECS cards to encourage Lily to "talk" to them.

But here's where the pity party starts....

Up until this point in Lily's life, she hasn't really been so engulfed with typical peers.  Except for Sunday morning church, Lily has been very sheltered, attending private therapies and a private ABA clinic.  She spends most of her time with other special needs kiddos and adult friends.  As a result, most young children I see have special needs of some kind.

Not anymore.

Never has the difference between Lily and her peers been so glaringly obvious as it has been to me this week.

I see children excitedly telling their parents about their school day.

I see children hugging their friends with delight, so glad to see them after the summer break.

I see children riding their bikes or walking home from school, loving that first little taste of independence.

I see children running excitedly onto the playground after school while the parents casually loiter and visit with one another.

I see parents that know nothing about 504, LREs, ARDs, IEPs, FBAs, BIPs....

And I'm jealous.

There.

I said it.

Because while Lily has had some stellar moments this week, she's also had some not so stellar ones.  Like when she bit her Life Skills teacher, not once, but twice.  Like when she turned chairs over.  Like when she actually lifted the lid on the potty and climbed in.  Like when she swallowed a small plastic reward token. (and yes, the teacher was sitting right there with her eyes on Lily when it happened so it wasn't a matter of neglect.)

Honestly.  How many of you got phone calls from both the school nurse and the principal this week?

Of course, everyone is deeply apologetic about the token swallowing but it's hard to not be able to say, "Rest assured.  We will take care of these behavior issues at home."

I mean, we completely agree that the behavior is unacceptable.  And we want it to change as much as, if not more than, the school staff.

But everything is just triple challenging when you have a special needs child.  A quick swat on the behind solves nothing.  An If/Then behavioral chart is a laugh.

I've raised two other girls.  I know how to discipline children.

But honestly, I don't always know how to discipline this little Bird.

And for that reason, right now, I am feeling sorry for myself.

I feel like I should know these things.  Like I should be able to tell the teachers some tried and true methods for taking care of behavioral issues.

But I just don't.

About the time I come up with something that does work, Lily changes and it doesn't work anymore.  And some things work for some people and don't work for others.

Plus, I'm feeling sorry for myself because my kid doesn't come skipping out of class, showing me artwork and asking if she can do the slide before we go home.

I'm feeling sorry for myself because I have a knot in my stomach when I pick Lily up, wondering what shenanigans she has pulled today.

I'm feeling sorry for myself because Lily is on a special diet and can't eat birthday treats - and she really doesn't even care.

I'm feeling sorry for myself because short of wearing chain mail, I can't promise the teacher she won't get bitten again.

I'm at a loss.

And I don't like feeling this way.

OK - enough sore feet.

Time for the music.

First Day Photo Shoot

Here it is... the moment you've all been waiting for:

The First Day of Kindergarten Photo Shoot.

Featuring thoughts from our reluctant model.... Lily Bird!

"Mom said to hold this paper. Not sure why but... whatever."

"Ok, Ok, Dad.  I got this.  You can let go now."

"Ooooooo.... bendy"

"What does this say anyway?"

"Who cares if you can't read the paper? This is as good as you're gonna get, lady. Now snap the photo."

"What? It's Mom's first day of kindergarten, too??  Woo to the Hoo!"

"Aw, shucks.  I know I'm cute.  It's my cross to bear..."

"No matter how the day goes, at least I've got my cute shoes on."

"Wait just a doggone minute.  There's iPads at this class???"

"I just might like kindergarten after all."

 The general education kindergarten classroom door, with Lily's name on the far left purple crayon.

And a close-up:

The first day wouldn't be complete without a special treat for the teacher!

Want to make your own "apple for the teacher" treat?  It's super easy.  I got the original idea from the website Event Trender, I  just "cuted" it up a little.

Caramel Apple Dip:

8 oz. cream cheese, softened

15 oz tub caramel apple dip (I used Marzetti's brand)

Heath Bits 'O Brickle toffee bits 

Mix cream cheese and a nice big spoonful or two of caramel dip to a creamy consistency - and to your liking.  Add a few spoonfuls to a half-pint wide mouth mason jar and spread around the bottom.  Add a thin layer of plain caramel dip on top.  Finish with a sprinkling of toffee bits.  Close jar and slip into a clear cellophane bag.  Add a granny smith apple right on top.  Tie bag off with a cute ribbon.  Add a tag and you're set!

I got three good size servings of dip from this recipe.

And I downloaded the gift tag from Brown Paper Packages, a really lovely website with lots of fun things to browse.

I'll share more details Friday but Lily had a great first day of school.  Her teacher told me she wanted to do cartwheels it went so well! 

Lily came home ready to eat supper by 4, then she and I curled up to watch a little Backyardigans, and by 5:30, this was the scene in my house:

a totally wiped-out kiddo.

And if you want to know the truth, I won't be too far behind.  It's been quite the day.

Here's to a great year!

A Little Chocolate Goes A Long Way.... I Hope!

IEP revision meeting today.

Because every meeting is better with chocolate...

and it's never too early to start bribing treating the Bird's teachers.

Have a great weekend!

College and Cars and Kindergarten... Oh My!

And to keep the words of Jimmy Buffet going, "nothing remains quite the same."

I can hardly keep up with all the new beginnings going on around my house these days.  I didn't even have time to get my two posts done last week so instead of a peek at my special needs binder, you ended up getting a nice, long look at it.

First change?  My oldest is officially a Liberty University student now.

Ryley and I flew to Virginia on August 12th to get her all moved into the dorm.   This was quite the undertaking, starting with this (that's me and my mom below)...
 

and ending with this...



Cute and cozy, right?

Her dad understand not a bit of this.  When I told him I needed at least two full days in Virginia for moving in, he actually said, "What's there to do?  Unpack a suitcase, hang a poster, and meet the roommate.  Done!"

Ummmm.... really?

Let's just say it was quite the eye-opening experience for him and he won't question me when it's time to move Reagan to college.

So now my biggest baby girl is a mere 1,359 miles from me.  Thank goodness for unlimited texting, Skype, and FaceTime.  Ryan is going for a visit in September, Reagan is going in October, and then Ryley will come home for Thanksgiving break.  How many days until November???

Next change?  After much family discussion, Reagan has decided to make a change in her schooling as well.  Instead of going to the small private school she's gone to since sixth grade, she will be doing online courses through LU that offer dual credit, meaning you take one class and get both high school and college credit for it.  Saves time, not to mention a bunch of money because online classes are much cheaper than on campus resident tuition.  Ryley did this her senior year of high school and she's actually starting at Liberty as a sophomore with 33 hours of credit.  She can easily have her Bachelor's Degree in three years.

Of course, by choosing this option in her junior year of high school, Reagan could graduate high school a year early.  But if you think I'm sending her to Liberty even one day sooner than I have to, you better think again.

Reagan is also finishing up Driver's Ed and will hopefully soon be on the road, doing all my errands for me.

And finally, life just wouldn't be normal if there weren't some changes on the horizon for the Bird.  Kindergarten starts in a week and I couldn't be more excited.  And petrified.  Starting something new with Lily Bird is always so nerve-wracking for me.  No matter what happens, I'll be glad when The First Day is under our belts.

And just because all of this going on just isn't quite enough, we're starting a new medical journey with the Bird.  We are going to actively pursue an attempt to identify the exact virus (or viruses) present in Lily's body.  Armed with that information, we believe we can more accurately treat it and see better results in regards to her incredibly low white blood cell count.

I could try to explain how this is done but since I'm still learning myself, I'm going to give you a link to an incredibly fascinating article that got my mind thinking in this new direction.  I didn't even know something like this was possible and for those of you with children who developed "normally" and then regressed, it's definitely something worth looking into.  Click here to read the article.

We're starting right here in Austin with an infectious disease doctor who is actively on board with us and committed to helping us get to the bottom of this.  She will also send us anywhere we need to go if she thinks we are limited by what Austin has to offer.

Dr. Goldberg, our California doctor, is thrilled because he has been after us to stop treating Lily like a child with autism and to start demanding medical treatment for what he feels is her correct diagnosis - Neuro-Immune Deficiency Syndrome with Viral Encephalopathy.  It's only taken him a year to convince me that my daughter is physically sick and all the therapy in the world isn't going to correct that.  She needs medical treatment from medical doctors.

Sorry, Dr. G.  Sometimes, I'm a slow learner.

So.  You think that's enough "new beginnings" to last us a couple months?

Let's hope so.

A Peek Inside My Planning Binder

In Tuesday's post, I mentioned that I had put together a planning binder to keep with all of Lily's "stuff" for kindergarten.  Lots Two of you asked for a closer look at the binder.  And since I always aim to please my readers, today I'm going to give you an inside look at my latest creation.

Before we get started, there are a couple of things to keep in mind:

One, this binder hasn't actually been tested and proven to work just yet.  This is how I'm planning to hopefully stay on top of all the paperwork I'm expecting to see flow between the school and my home. And we all know that reality has a way of working its magic on our best-laid plans.  If the binder isn't working, I'll obviously change to something else and I'll let you know if that happens.

Two, this is old-school.  My husband thinks I've lost my mind for not doing all of this electronically.  And maybe he's right.  But I've always been a pen and paper kind of gal.  And I don't need any tutorials on how to punch holes and file.  You may prefer to take these ideas and incorporate them into an electronic system.  To which I say, "Good for you! Now show me how you did it!"

Three, this is a work in progress.  I'm still collecting much of the information that will be in the binder.

And four, I got a lot of my information on creating the planning binder from www.wrightslaw.com which is a valuable source of information regarding special education law and advocacy.  There is a ton of material on the website that will prove helpful to all parents of special needs children in the public schools so I encourage you to bookmark it.

OK, let's get this show on the road!

First of all, I'm using all the fun binder building supplies from the Martha Stewart Home Office with Avery line that you can find at Staples stores.

There are lots of materials that enable you to customize your binder to fit your exact needs.

I chose a large smooth red binder and right in the front, I put some free printable 2012 calendars I found online at The Tomkat Studio.

I organized my binder per the instructions on the Wright's Law website so my dividers are labeled Providers, Contact Log, Master Document List, Documents, and Incident Forms.

The Providers file is a form like this:

and contains a list of anyone who provides services to Lily - doctors, therapists, teachers, evaluators, and the like.  It puts all of those people in one easily accessible place, as well as their contact information.

The Contact Log looks like this:

and gives you a spot to record meetings, phone calls, emails, text messages... any type of communication you have with any of your child's providers.  I also plan to put copies of emails in this section of my binder.

The Master Document List is simply a recording of all the documents in my binder in one handy reference.  It will allow me to quickly locate a document when I need it and it looks like this:

The Documents section is pretty self-explanatory.  It will contain all of Lily's educational records, filed in chronological order (oldest paper on top working to newest paper at the end).  This creates a "big picture" of Lily's educational experience, from the very beginning to the most recent event simply by reading from front to back.

The Incident Forms look like this:

and this:

These are really only used on an "as needed" basis for issues like not doing school or home work, discipline, behavioral concerns, or conflicts.  The anecdotal form could also be used for less "dramatic" things like playground accidents or falling out of chair in the classroom and the like. 

The Wright's Law website provides a much better explanation than I could for why the binder is put together this way rather than topically.  Click Organizing the File for more details on how to put together your own binder.

If you would like to make your own copies of these forms, here are some helpful links:

Master Provider List

Master Document List

Now, I'm a computer dunce so I did a lot of cutting and pasting from websites to Pages to create my contact log and my problem report worksheet.  If you want to do a little cutting and pasting yourself, have at it using these blank ones below.  

Contact Log:

Who
When
What you wanted
What you were told
Notes

Problem Report Worksheet

Do you have frequent or ongoing problems with the school – frequent suspensions, homework problems, teacher problems? You can use the Problem Report worksheet to document ongoing school problems. If you have several Problem Reports about the same issue, this is evidence that your child’s program or placement is not appropriate.

Date:    ______/__________/_________
            Month       Date                  Year

Problem: ____________________________________________________

_____________________________________________________________

People involved: ______________________________________________

Facts (5 Ws + H + E)

What happened? ______________________________________________

When did it happen? ___________________________________________

Who was involved? ____________________________________________

Where did it happen? __________________________________________

Why did it happen? ____________________________________________

Who witnessed? ______________________________________________

What action did school take? ____________________________________

What action did you take? ______________________________________

Other facts: __________________________________________________

_____________________________________________________________

Click here for a handy list of which of the hundreds of documents our kiddos generate that are actually keepers.

I have a large zipper pouch in the back to hold pens, post-its, paper clips, and things like that:

as well as a vertical file folder containing the originals of all the forms used in the binder:

And there you have it!  Of course, it looks lovely now, all fresh and new for the school year.  But, while it may not stay looking lovely, fresh, and new, I'm hoping it will keep me organized and on top of things so that I can be a key player in Lily's kindergarten success.

Questions?  Comments?  Suggestions? Advice from those of you who've been down this road a time or two??  It would be greatly appreciated so shoot me a line!

Have a fantastic weekend!

A Good Day for a List

I've just got a bunch of little stuff today - not anything really worthy of an entire post.  So you know what that means... a list.

And here we go!

1.  Monday morning, we had a meeting at the public school that Lily will be attending for kindergarten this fall.  It went really well, the teachers are quite impressive, and I'm actually getting excited about this new adventure!  The Life Skills teachers and Ryan and I are working together to prepare a "temporary" IEP for the first month of school.  Then we will all meet again after that first month to discuss how Lily has adjusted, what things seem to be working, and what things need to be changed.  Then we will write the actual IEP that will be in place for the remainder of the year, obviously making adjustments as needed along the way.  I'm really expecting good things this year and look forward to sharing our journey with you.

2.  At the same time that we're beginning this kindergarten adventure, we're also launching our oldest from our little family nest.  This time next week, Ryley will be in Virginia, starting her next phase of life as a college student.  So far, I've done a good job of keeping it together.  But I have this dreadful feeling building up in the pit of my stomach and I have a strong suspicion that it will only go away after  a good old-fashioned ugly cry.  As I get on an airplane.  Without my biggest baby girl.  Must stop talking about this now.

3.  Speaking of tears, I'm not ashamed to admit I did shed a few after watching double-amputee Olympian Oscar Pistorious from South Africa race in the Men's 400 Meter Semi-Finals.  While he did not qualify to run in the medals race, it really didn't matter.  It was simply an amazing thing to see.

But even more amazing?  Watching Grenada's Kirani James win the heat and instead of celebrating, immediately go over to Pistorius and ask to switch bib numbers with him, an Olympic first and a touching show of respect for all Pistorius has accomplished.

 

When the 19 year old James was asked about the gesture, he had this to say:  "He's an inspiration for all of us.  What he does takes a lot of courage, just a lot of confidence.  He's very special to our sport.  He's a great individual and it's time we see him like that and not anything else."

Amen.

And you can bet I was cheering loudly when Kirani James won the gold medal Monday night, a first ever for Grenada.  That young man demonstrates that you can be both an incredible athlete and a true gentleman. He has a fan in me.

4.  OK, so we've talked about sad tears (#2) and happy tears (#3).  I've also shed some bitter tears this week.  Lily's two favorite things in life are the iPad and water.  And on more than one occasion, she has tried to combine the two, with disastrous results. Well, Saturday morning, like a dunce, I handed her the beloved iPad without the protective case on it.  She walked straight into the kitchen and proceeded to dunk it in the crock pot which I had been soaking overnight.  Beloved iPad is currently residing in a gallon size baggie of rice but I'm not holding out much hope.

A few things I've taken away from this:

One, for the millionth time Lana, do not give her the iPad without a case on it.

Two, it's time to invest in Liquipel coating for our electronic devices.  No more excuses.

Check out this unbelievable video to see what Liquipel does.

And three, quit being lazy and soaking dishes overnight.  Wash them and put them up before you go to bed, you bum.  (This is me talking to myself - I would never call you a bum.)

5.  Lily needs a backpack for school and since she loves purple, this is the one I'm getting for her:

6.  While I don't need a backpack, I did put together a planning binder so I have one place to stash all of Lily's school stuff - contact log, meeting notes, calendar, forms, schedule of services and so on.  It looks a little something like this:

Of course, you should probably picture how it will look a month or so from now, with papers sticking out all over the place and illegibly scrawled handwriting on those cute post-its.

7.  And last but not least, a picture of the Bird.  Just because.

Hey.  Let's chat again Friday, ok?

      

News You Can Use - Volume 4

Let's end the week with a round-up of some great discoveries from around the web.

I don't know what the temperatures are where you live but in Austin, it is still most definitely summer time.  Which means that while we may be buying school supplies, we're still searching for ways to keep cool.  Here are two links for some great DIY backyard water fun:

5 DIY Ideas for Water Fun This Summer

13 DIY Water Toys For Kids To Make a Splash This Summer

 "In-Sync Activity Cards: Simple, Fun Activities to Help Children Develop, Learn, and Grow!" is a fun new resource for special needs kids by the authors of Growing an In-Sync Child, Carol Kranowitz and Joye Newman.  

Click here to read a short but helpful review of the cards by Elise from Raising Asperger's Kids.

Now. How about a little technology news?

Here's a great article on 10 Ways to Optimize An iPad for Kids with Special Needs.

Do you use Proloquo2Go?  Well, now there are two American genuine, natural-sounding children's voices available for the app.  You can choose between Josh and Ella.  Click here to watch a video on the making of the kid voices.

Need an easy way to stay on top of the constantly changing free apps available for limited times only? Well then, visit www.smartappsforkids which features a good free app of the day.  Even easier? Follow @smartapps4kids on Twitter.  Then download away!

And since we've been talking about PECS here lately, Brain Parade's See. Touch. Learn. is an app I'll be checking into when we're ready to once again try transitioning Lily from the actual picture cards to an electronic augmentative assistive communication device.  Anyone know anything about this?  Please share a comment!

Next, a little feel good news.  Have you met Valentina Guerrero?  No?  Well, allow me to introduce you.  Valentina is the cover girl for the Dolores Cortes Kids USA swimwear catalog.

And yes, Miss Valentina has Down's Syndrome, just in case you were wondering.  There's been some controversy over this, of course.  Sigh....  Ellen over at Love That Max wrote a very thoughtful post about it if you missed it.  But I for one think Valentina is perfect just the way she is.  And really, when you look this stinkin' cute...

 shouldn't you be a swimsuit cover model??  I say a resounding YES!

For you blogging parents out there, have you noticed my cute new Pinterest link board I have over there on the right hand column?  You can click on any of the six buttons and be taken directly to that particular Pinterest board of mine.  Well, if you like what you see, the lovely Rene of Bargain Hoot, can create one especially for your blog, too.  And for only $20 to boot!  Click here to get in on the fun!  And while you're there, take a little time to check out Bargain Hoot, a happy blog full of creative, money-saving ideas.

Last but not least, need a good laugh?  Then go visit www.honesttoddler.wordpress.com or follow him on Twitter @honesttoddler.  You won't be sorry.

Enjoy the weekend!