The IEP(and how it feels for me personally)

Every year I rant on Facebook about how much I dread Kendall's IEP.  Often, in response, some people will tell me to be thankful for them or thankful for the team of people that Kendall has behind her and her IEP.  So, before I start this I want to assure everyone that I am thankful.  It took months and months for the school to hire a teacher this year but in the end they hired a great one.  One that understands IEP's from a teachers perspective and from a parents perspective because she has a child with an IEP.  I am grateful for her OT, Speech teacher, adaptive PE teacher(he's so great), the school psychologist(she was the only one who got up to get me kleenex when the tears started to fall) and everyone else that helps Kendall on a daily basis.  I am grateful for IEP's.  I just wish they could be administered differently so that they really get a COMPLETE picture of the child.  Ok, now that's out of the way.

Picture sitting at a table with all of the following people: Regular Ed teacher, resource specialist teacher, special ed teacher, principal, OT, speech, deaf and hard of hearing teacher, adaptive PE teacher and the kicker..... the school psychologist(pysc just come once every 3 years and this year she was there).  All sitting with their laptops and 25-30+ page long IEP's.  Each individual take turns going over the tests they have done with Kendall.  Each test she takes then tells us where she is equivalent to a "typical" child and what level she is functioning at.  The ENTIRE YEARS work that they have done with her is summed up based off different tests they do with her just to complete the IEP.  So, for example, she could say throw a ball 7ft into a target 10 times in a row but if on testing day(for the IEP) she only makes it 1/10 times that is what goes in the IEP and then the report comes back "very low functioning" age level equivalent of say a 3.5 year old or whatever.  Same with site word tests, math tests, things related to speech, phonetics, comprehension, language, fine motor skills, can she cut a circle? A square? Can she write a K?  Can she recognize upper case and lower case letters?  Does she recognize basic signs in life like stop signs, danger signs?  All of that plus more, so much more.  Then the school psychologist chimes in about observing her and her findings and it goes on and on and on.  All of this is happening while I(and Dan) sit there listening and staring at the papers that just constantly say over and over how far behind she is but they just keep going over test after test.  It's like a hard punch to the gut every single time they give the results.  Look, I've been told a time or two I'm pretty darn strong both mentally and physically and I could likely take some punches but this is NON STOP for almost 2 hours.  And the entire time I am thinking, these tests do NOT define Kendall.  Why is this all based on stupid tests?  Then some of the teachers start to admit this as well but I feel like they are saying it mainly because they see me start to cry(which normally I don't do in IEP's but today it just happened).  Without my tears, I think only a few of them would have remembered that they are talking about my child and this IEP process is PERSONAL not robotic.  Tests do NOT define someone. 

Then once they tell us the results of all these tests they move into setting goals for her for next year and give their reasoning behind the goals.  We either agree or not to these goals.  This is the easy part and goes by rather quickly.  It's much less painful than the first part.  Then it's pretty much over.   

For a short while some do start to talk about and recognize Kendall's big heart, how she's always happy and happy to see them and always willing to "do the work".  Some say she's even starting to get more competitive in things they do(I'll thank her competitive brothers for that).  Now these, these are the parts that truly matter to me.  Her heart, her smile, how kind she is, how friendly she is....why can't they measure that?  For Kendall, those are her strengths and they aren't tied into all these tests that the entire IEP is based upon.  Academics are never going to be where she excels but there are so many other areas that are more important for her to excel at and I just wish they could focus more on them.  I could care less if I ever hear another one of her academic tests results again in my life.  I do understand the importance of academics but not for Kendall.  For her, it's all about practical life skills from here on out.  Let's focus on realistic and achievable goals for her so that she can be as independent and confident as possible as she continues to grow up.  Let's also recognize her strengths because in my mind she's got what way too many "typical" kids are missing these days...that big ol' happy loving heart.  THE END.

Random Christmas Kindness

I posted this on Facebook not too long ago but I wanted to leave it here as well so I remember how kind people can really be :)

At Target with Kendall and an older man is in line behind us. He says Hi to Kendall she says Hi back and smiles. He asks "How are you?". She replies "Good". He then tells her Merry Christmas and she says it right back. Clear as day. I can't tell you how many years she has practiced this exact type of conversation in class with her teachers/classmates. Everything that came out of her mouth was so clear and so appropriate to this little conversation. I'm sliding my red card through and he looks at her and says "do you have a piggy bank?". She answers "yes". He then proceeds to pull $2 from his wallet and I must have looked shocked because he asks me if it's ok to give it to her so she can put it in her piggy bank. I said yes and thanked him about a gazillion times and we left. If he only knew Kendall's whole story and what an amazing act of kindness towards her this was. Sometimes I feel like the Grinch with a small heart but as I got in the car ............."And what happened then? Well, in Whoville they say that the Grinch's small heart grew THREE sizes that day. And then the true meaning of Christmas came through, and the Grinch found the strength of ten Grinches plus two.". ‪#‎RandomChristmaskindessrocks‬

Eleven

It happened, Kendall turned 11.  I love that she loves her birthday and she totally deserves to be celebrated in a big way every.single.year!  She's come so very far and is loved by so many people.  I'm so lucky to have her in my life.  That being said her birthdays are hard on me.  They always have been and I feel extremely guilty about it.  This birthday has been especially hard and I never saw it coming(actually I rarely ever see it coming).  Here's what the past 5 days looked like, it's a little example as to why it can be hard.  A little side note, I actually have a hard time sharing all of this.  It makes me feel completely vulnerable, whether 1 person reads this(being Dan) or 50 people read it....either way I feel the same amount of vulnerability.  At the same time, I share it in hopes that someone, some day may be able to relate or maybe it can help someone who is just starting out on a similar journey with their own child with special needs.  

4 days before her birthday, I was celebrating our wedding anniversary at a Martina McBride concert.  As she sang "In My Daughters Eyes" with just the piano, I found myself crying.  Dan likes to say sobbing but that just wasn't true ;).  Even he said the song gave him goosebumps.  If you've never heard the song before you can hear it here: http://www.youtube.com/watch?v=eLS0Y40WwlA.  If you listen to it you can probably see why it could make parents of a girl(s) a bit emotional.    I'm just glad she didn't sing God's Will because that would have made me a complete sobbing mess.  That can be found here: http://www.youtube.com/watch?v=YCRrrP0EhPc.  I left the concert happy but the song was weighing on my mind because it's always been my song about Kendall ever since she was little. 

The next day which was Friday, I was driving to bootcamp and I found myself doing something I rarely do anymore.....thinking about what kids Kendall's age can do and that led me to thinking about what Kendall should or could be doing at age 11.  It's a bad place for my mind to be.  It was like all these thoughts just snuck up on me and now I was sitting there feeling frozen.  It felt like she was just born and I am finding out the news about her(which was all very unexpected), wondering what is going to become of her life and mine.  I don't even have the words to describe how hard the first 4 years of her life were, filled with lots of surgeries and therapy and me trying to take it all in.  Trying to come to terms with letting go of a lot of dreams that I had for her was and still can be one of the most painful things I've ever done in my life.  It's a huge loss, like Welcome To Holland states " and the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss." 

While at bootcamp, I was just trying to get through the class.  In between sets of things we were running around the building and I couldn't breathe.  I mean I had to stop and walk slowly and convince myself not to gasp for air while holding tears back.  It felt like I was in the midst of a panic attack.  That run is easy for me after all these years(the class is not) but one time around that church is 1/10 of a mile and I must have done it HUNDREDS of times but I just couldn't get it together very well. My friend noticed right away something was wrong when we were warming up but my response was "nothing" because if I would have let it all out at that moment the ugly cry would have started and I didn't want to interrupt the class.   So I trudged through just trying to breathe and when I realize it's not working I tell my friend(and hold it together a little bit) why I'm sad and then I start to feel a little bit of relief and make it through class WHEW. 

That same afternoon we met with Kendall's case worker from the Regional Center.  We currently receive respite services from them but they need to update their info every so often.  After about an hour of meeting with the case worker she told us that Kendall now qualifies for MediCal under a special provision.  I just heard the words MediCal and thought great she'll have secondary insurance now.  She then went on to explain that under this provision, once she has her MediCal card, we are eligible to apply for something called IHSS(In home support services).  Basically, someone comes out to evaluate Kendall and if we qualify we would be eligible to have someone come into our house and do things like help clean, meal prep, laundry, help watch Kendall to keep her safe, take her to drs appts and other things as well.  The kicker of this is that if we qualify, Dan or I(or both depending on how many hours we qualify for) would get paid to take care of Kendall.  It's not a lot of money but it would be very beneficial to our family and it's all things we've already been doing for 11 years.  I wanted to cry happy tears because I'm so thankful that there is more support out there for families like ours.  I was thankful for our new case manager for telling us about all this.  I don't know why all of the sudden she qualifies for MediCal but I'm glad she does.  I hate that finding out any of this info took 11 years and is really difficult to do on your own but happy it exists regardless.  

So, we celebrate her all weekend long because why wouldn't we?  She's been such an amazing gift and 11 is a big milestone.  Last night after she goes to bed I grab the MediCal paperwork and realize that the provision she qualifies under is called Institutional Deeming.  Immediately my heart sank just based off the wording of the provision.  What does it mean?  From what I have read it means to provide health care clients the ability to remain at home or in the community rather than be in an institutionalized setting. Let that sink in for a minute.  My heart breaks some more.  One would NEVER want their kids to qualify for MediCal under this provision.  While I'm grateful it exists my entire self is just sad.    As I sat at karate tonight, I told a friend a little bit about how I've been feeling and she says "it's ok to just cry, be sad, it is sad" and those were such comforting words.  No "it could be worse", no "it will be ok"....just seriously the most peaceful and comforting words ever.  Thank you Kate, I'm going to do just that for now.   

Spread The Word To End The Word

If you've never seen this video you should watch it now then watch it with your kids.  Replace "Olivia" with Kendall.  You get the picture.  Thank you :)

https://www.youtube.com/watch?v=CoqaNG0Ozqc

 Unseen

I have been on both sides of the SAHM and working mom fence as a parent.  I actually don't find one better than the other, they both worked great for me depending on the needs of my family at that time.  What I do find interesting is the feelings I experienced in each role.  I went back to work when Chase was just 9 months old.  It was very part time, just 10 hours a week for about 6 months then 15 hours a week.  That worked, the balance felt great and I was a happy mom which meant our home was happy too.  As Chase got older, I upped my hours more, eventually working 32 hours a week which really was more like 45+ hours a week when all was said and done.  That felt horrible.  I felt like I was completely stretched thin and nothing could have my full undivided attention.   That was definitely NOT working for me no matter how hard I tried.  Then I realized Chase had a year left before going to Kindergarten and I completely freaked out about how fast time was really flying.  I wanted more time with him before Kinder and more time home with the kids and Dan.  So, as most know, I quit my job and am now home full time. 

I've been home for about 9 months or so now and it's been mostly really good.  Our house is less stressed, we eat more home cooked meals together, I can work in the class as needed and don't feel guilty if I or one of my kids get sick.  I get to see a lot of my kids and I'm thankful because I can't get this time back.  Then a few weeks ago I had a moment.  I freaked out at Dan over something ridiculous, so ridiculous that I can't even remember what it was about.  Then 30 minutes later these words came out of my mouth.  "I just feel unseen".  I didn't mean by him.  He's great at thanking me for all I do, so let me be clear when I say it's not him making me feel this way.  It's bigger than that.  It was the first time as a mom I really felt like no one really gives a crap in the universe about the work I am putting in.  Moms who stay home don't always get a lot of recognition.  We get stuck in the routine of it all.  The routine is day in and day out, very cyclical and it can drive you mad at times(as it did me that night) but this was nothing new to me so why was I freaking out so much?  I then went on to think I was a bit crazy so I asked a lot of mom friends that no longer work if they have experienced this and every.single.one said yes.  I mean one big unanimous YES!!  I was shocked, not that everyone I talked to felt like this, but mostly that no one had ever really talked about it before to one another.  

So what is it exactly that makes one feel unseen as a mom?  Is it just the routine of it all?  Is it my age(nearing 40)?  Is it that the universe seems to place more value on one that works full time and makes lots of money?  I guess I just don't really know the answer, at least for me in particular.  I'm really lucky and mostly really happy.  Dan appreciates me, the kids still seem to like me, there isn't really a way to give me a financial raise so then how do we conquer this feeling so many moms have of being unseen? 

Dance Class

Many know I found a dance class for kids with special needs and yesterday was Kendall's first class.  First off, the class, teacher and other students were wonderful and friendly.  Kendall really liked the class a lot, I think mostly because the music was good and there were props(who doesn't love props??!!)  She got to spend most of the class in a princess dress carrying a fancy fan.  It was quite cute and the best part was that no one cares what she can or can't do in the class.  There is no pressure which is great.  However, it was a mixed bag of emotions for me.  It is COMPLETELY heart breaking to watch your child not be able to do so many of the things that others kids can do, even in this dance class.  It's even more heart breaking that I can't fix it.  So it makes me really sad.   Parenting Kendall is by far the hardest thing I have ever done in my life, it can be really hard on the heart.  It's also the most wonderful thing I've ever done because it's taught me so much and because she is so amazing.  Most importantly, there is so much she can do and I would say her "free style" dance is just the best ever.  It takes the sadness away because you can't be sad watching it.  She's so happy that it just projects on to me(and Dan too).  So right when I was battling with this pit in my stomach during the class, this happened and all was right in my little world again...

Because of that, we'll keep going back and she'll learn and grow as will I.  Our journey in life together will continue on as always.  She'll make me a stronger, better mom because clearly she knows how to enjoy life, a little lesson everyone can learn from her!


Finally,  a little side note.  Chasey turned 5 this past Sunday.  It was his golden birthday.  I can't believe that he is 5.  He's pretty great and he even asked me yesterday "Mommy, was Kendall able to do all the dance moves?".  I said "no she wasn't but she had a good time anyway."  His response, "with practice she'll get better, right mommy?".  That boy loves his sister.  They are really close.  He then told me he'd like to do dance class with Kendall.  So sweet!  Anyway, a lot of people have seen the video I made for his birthday but I'm putting it here as well:  

https://vimeo.com/81291436

Once every few months I can't get to sleep at night.  It's as if once the house is settled and quiet my mind just turns on and the thoughts/worries/concerns kick in and I can't shut my mind off.  In all reality, these worries are always in the back of my mind.  I could be thinking about 1 or all of them at any given time but usually they can be kept at bay.  Not last night though.  I believe all parents share a lot of these concerns but as Kendall's parent I definitely have some extra worry(or at least what I consider extra).  So, I thought I'd share them because surely I am not the only parent out there with concerns like these and I KNOW other parents of kids with special needs have these same worries.  Some of my concerns are minor and may seem vein in a way and others are huge. I realize some of them have pretty simple answers and I just need to investigate what those answers are.  I also realize that some have no answers and are more of the "wait and see" type. Those are the worries that are the hardest ones to deal with.  I'd much rather have an answer or be in the know than not know anything.  However, there aren't always answers when it comes to raising a child with special needs.  Especially with a child as unique(and awesome) as Kendall.   Alright, here's my top 25 list of concerns:
 
1) What happens when she turns 18?

2) What medical insurance will work for her when she's off ours?

3) What happens to her(and the boys) if something happened to Dan and I?

4) Will she live with us forever?

5) If something happens to Dan and I(when we are at least 100 years old) will one or both of the boys take care of her and let her live with them if need be?  Is that expectation too much of a burden to put on them?

6) How are we going to handle puberty with her?

7) Next year in middle school, if she has a male teacher, how do they handle puberty?

8) If she gets lost one day in life, will people understand her when she says what her name is?  I need to order a bracelet with her info on it(easy answer for this one).

9) How will she get along in life when she can hardly read and write?

10) Are kids going to laugh at her today or give her weird looks?  

11) When strangers come up to her and ask her questions and she answers and is hard to understand what type of reaction are they going to have?  Good?  Bad? Indifferent?  How will she/I react to that?

12) Are kids going to treat her just like any other person out there?  Are adults?

13) Is social security going to be enough for her to live on once she turns 18?  I know the answer is no but how much is enough?

14) Am I screwing up our family' s financial future by not working?  I know our family is better off for the time being with me home.  It's calmer, it's more balanced but the financial concern is always there.

15) Will she need more surgeries?  I already put off Drs appointments that are due because she sobs the entire way to see them and has horrible anxiety when it comes to Drs.

16) I need to set up a special needs trust.  I need to set up a living trust.

17) What will Kendall do if she can't/doesn't go to college? 

18) Will I be caring for her 24/7 when she is out of high school?

19) What programs are out there for kids with special needs that don't go to college?

20) Will she be independent enough to have a job of some sort when she's older?

21) Will she stay healthy?

22) Will there be more hospital visits/stays?  What will they be for?

23) How do the boys feel about Kendall?  Will they feel comfy having their friends over as they get older knowing they have a sister that is "different"?  How will those friends react to her? 

24) Will she ever be bathe herself or will someone always have to help her?

25) Am I doing enough for her?  Should I be doing more?

The list could really go on and on.  I'm pretty protective of Kendall and the above worries are just some of the reasons why.  I just wish I had all the answers.  Not knowing can be a horrible feeling at times.  What I do know is this, Kendall is one happy girl and she goes through life with a pretty great attitude and for that reason alone I'm really lucky that she is my daughter.