Gaining Independence!!

I always do my best to be honest when I write about my experiences when it comes to raising Kendall.  That can include all sorts of emotions from very low lows, sadness and frustration to happiness, joy and being in complete awe of her and her accomplishments.  I try to keep it real in hopes that all can feel what it's like to raise a child with special needs through my writing.  It's been quite the ride if you've known Kendall since she was born or even if you've followed some of the things I've written here about her.  She turned 12 on September 22 and is now in 7th grade.  Sometimes I look at her and think why does it feel like it takes so long for her to really understand things and other times, like this past week, I look at her and see just how much she's grown and how much independence she has gained.  I mean my biggest goal for her in life is to become as independent, happy and confident as possible.  It's going to look different than that of a typical kid but I don't care how it looks or how she gets there, I just want to see it happen and I know it will take longer.  I'm ok with that.  And from the start, I've always said the best part about Kendall is her heart and how caring and loving she is.  That's her best quality in my opinion.

Here are a few recent highlights/brags because she deserves recognition just like the rest of us do.  Earlier this week we got a letter from her middle school saying she had been selected for an award by her teacher for modeling her schools "Bronco" attitude, specifically modeling "Good judgement".  "Students with good judgement show concern for fairness and the welfare involved, make careful decisions, possess freedom from preconceptions and biases".  If you ask me, that's pretty cool, especially that last part.  Those things are not easy to teach to a typical 7th grader, specifically one with special needs, yet here she is getting this award this week.  It's a moment worth celebrating for sure!  

As Halloween approached earlier this week she was quite excited.  She was a princess pirate and LOVES to get dressed up.

This year we went trick or treating with a big pack of boys from the neighborhood and a couple of Brady's friends.  She use to tire quickly walking around and we use to have to walk with her to each door encouraging her to say or even sign trick or treat and use her thank you's.  This year she didn't wear out, she kept up with the boys and confidently went to each door as we stood back, really far back actually.  She said Trick or Treat clearly and confidently and used her thank you's every time.   As I stood back from afar all I could think of was the first probably 5+ years of life when all I could do was wonder when/if/what she would accomplish in life and I remember so clearly how stressful that was.  And here she was now not missing a beat, doing this all on her own with a little help from her amazing brothers and their friends.  I know she's teaching her brothers a lot about life, including empathy and compassion and I sure hope their friends are learning from her as well.  I think they are because I witnessed it last night and it warms my heart.  It may not sound like much to people with typical 12 year old kids but last night was a big step for her and her independence....huge actually.  Amazing and I was so proud of her. 

Finally tonight as Dan was cooking dinner, I look over and she's setting the table.  I'm not sure if he asked her to or not but she's happily doing it and doing it correctly.  Placemats were set, then forks with napkins, she asked me if we needed spoons(we didn't), she put cups out and filled them with water without spilling.  Then laid the plates out(don't judge our paper plates ;).  And again, I sat there and thought about all the things people said she may never do.  Here she is proving them wrong.  Being independent and happily helping us out.  Of course I had to take pics and document it:

Finally, and I wish I had pics of this or video of it but she has some pretty active brothers in all kinds of sports throughout the year.  She loves watching them play and this season in soccer when Chase scored one of his goals she jumped up and ran to me yelling Go "BOO BOO BEAR"(his nickname) she was so excited for him and immediately asked me if she could go hug him.  When Chase tested for his purple belt and 3.5 hours later passed she went up to him and gave him the biggest hug and kiss on the cheek that I've ever seen, it was completely spontaneous and so very sweet.  She cheers for Brady in soccer when he's playing goalie or on the field just as much.  She's not perfect, no one is, but this is one strong, amazing and loving girl!  I'm so proud and lucky to be her mama.  I'm thankful for her and I'm loving watching her grow into a more independent young woman, even if day to day it can feel like such baby steps until weeks like this one where it all starts to come together.  Amazing, just completely amazing.  I can't wait to watch her continue to grow and amaze everyone out there as much as she amazes me.  Parenting a child with special needs is not for the faint of heart but as I've said time after time, she's teaching me more in life than anyone else ever has and for that I'm very grateful!  She's my hero in so many ways, so much stronger than I'll ever be.

https://www.youtube.com/watch?v=WEPB76o2KXw

We could hide away in daylight
We go undercover, wait out the sun
Got a secret side in plain sight
Where the streets are empty, that's where we run
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
Anybody's got the power
They don't see it cause they don't understand
Spin around and round for hours
You and me, we got the world in our hands
Everyday people do everyday things but I
Can't be one of them
I know you hear me now, we are a different kind
We can do anything
We could be heroes
We could be heroes, me and you
We could be heroes
We could be heroes, me and you
We could be
We could be heroes
We could be heroes
Me and you
We could be
All we're looking for is love and a little light
Love and a little light
(We could be)
All we're looking for is love and a little light
Love and a little light
We could be heroes
We could be heroes
Me and you
We could be



     

The Dark(er) Side Of Me

Sometimes in life my world becomes gray and NOTHING seems to go right.  You name it and it's likely wrong, off or not fair.  Even the littlest things seem to bother me.  I think things like why is this happening to me and not anyone else, when will it all get better etc.  Usually this happens to me around Kendall's IEP or her birthday, there are often triggers.  Even though I know there are triggers   I still almost NEVER see it coming.  It sort of feels like the joy is sucked right out of me or I've fallen and I can't get up.  Or if I do get up, it's like the weight of 10,000 pounds is attached to my feet while I'm trying to get up.   It feels like I just can't breathe, like life is way way way too hard, like things can't get worse.  And when I'm surrounded by happy people at this time, I can hardly sit and listen to their happiness which in turn makes me feel like a SHITTY friend.   My anxiety sky rockets and it's all I can do to get through each hour of each day.  It's anxiety combined with some SITUATIONAL depression.  Different things trigger it and usually it lasts a few days or weeks but this time it lasted months.  When this happens, I have a hard time telling anyone about it which is STUPID because it's really when I need the most support.   So now I'm writing about it because if you know me at all you know I write when I'm upset.  I try to be honest, raw and not hide how I feel in all my interactions but this, THIS is hard to talk about while it's happening.  In the end, I know I ALWAYS get up.  There's no not getting up, not with 3 kids, not with a child with special needs.  I won't let that happen.  I'm strong enough, even in my weakest moments, to know that at the very least I can fake it until I make it, during that time it's hard to breath but I keep on keeping on.  

At some point when all of this is going on people notice.  Thankfully, my friends and family notice.  I mean I'm usually social and overall pretty happy the majority of the time.  So my friends and family do their best to help me feel better for which I'm eternally grateful.  Sometimes it works and is just what I need but not this time.  This time it didn't help enough and I just kept hearing myself tell my brain the same story about how awful I was feeling and how hard my life was.  This is when I know/knew it's time to get back to therapy.  I've been in and out of therapy since I was in my 20's and it's saved me.  Today, she called BS on some things I said and also talked to me about how to stop obsessive negative thoughts or obsessive unhealthy thoughts.  In 50 minutes she made me realize that it's not all that bad, that there is a lot of good and the bad parts can be worked on.  Nothing is ever black, white or permanent.  I feel 100 times better than I did at 2pm today and I am hopeful that my grayness continues to go away little by little, bit by bit.  I know it will, it always does and then I grow and feel stronger and am able to talk about it.  Maybe the fact that I'm writing about it already means it's getting better because I'm actually admitting it out loud here and now.  Life is hard and challenging on so many different levels(marriage, kids, work whatever).  I don't want to be the person that pretends it's not.  I want to be the person that deals with the crap life brings and becomes stronger for it so here I sit and write.  Today I finally feel a little bit stronger(I definitely tend to reference a lot of country songs on this blog ;)  ) and a lot more grateful for all the things I have.  

If you feel this way, get help.  Don't feel any shame in seeing a good therapist.  Don't be afraid to really work on yourself.  It's scary, you'll hate hearing the therapist call you out on your own shit because she's right and it's painful to hear/recognize but it's the best gift I've given myself.  I'm still a big work in progress at the ripe ol' age of 41.  Here's to a healthy self, to a very healthy me all around...mentally and physically.  Peace out.

 

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