Katie Ireland: "Special Needs Mom" ???

 Katie Ireland: Mother of Special Needs Child. Yes, KMBC news, you are right I am a mother of a special needs child and I am honored to speak about our favorite charities and inclusive playgrounds on the news. And I am even more honored that I can show off my adorable loving 2 year old who happens to have special needs. But when I saw the clip my stomach dropped. Maybe it's because I'm only 2 years into this journey and I have never seen myself identified in that way by anyone except well me.Maybe I felt a bit indignant because that is not my only identity. But I get it, you can't possibly fit Katie Ireland: Wife, Friend, Daughter, Teacher, Mother of two beautiful children, one that happens to have special needs , all in one frame. I get that with what we were talking about that was my most important label to help get the message across. 

And to the people at the KC Star, I know you did not mean to make me feel like my breakfast was coming back up when you printed that Charlotte was just diagnosed with a form of Cerebal Palsy. How could you have known that those words are still so new to us that they get caught in my throat? That we have spent two years thinking Charlotte had a muscle disease only to learn this week that it definitely originated in her brain, in MY womb, at some point in her development. 

Charlotte's diagnosis explained:

Here's the deal. I am not ashamed of being a special needs mother, I am also not ashamed of having a daughter with CP. Actually, CP is preferable to many of the other diagnoses that have been discussed. And putting our names out there so that people realize that we are here and we are proud. We are 1 in every 4 families that have a family member with a special need. CP is the number one cause of disability in Children. CP, like most other diagnoses, has a very wide spectrum of how it presents. More than likely we all know someone with CP, I know quite a few these days, and they ALL have different symptoms and strengths. 

Children with CP are like snowflakes, no two are exactly the same. 

In fact according to Cerebalpalsy.org there are 4 different classifications for finding out what kind of CP a person has. 

First, the severity, we have not been told the severity of Charlotte's condition as this is all new and really her main diagnosis is PVL (Periventricular Luekomalacia) which is loss or damage of white matter in the brain. But our Neurologist said it would be fair and truthful to classify it as CP, which is easier for people to understand. But I will say not all children born with PVL have CP and not all children with CP have PVL. At least that is my understanding so far. 

ANYWAYS... If I were to gauge Lottie's CP, by the definitions they use on the website, I would say Charlotte is between moderate and severe. That being said I want to be clear that the brain is an amazing organ that had plasticity and can repair itself. So Charlotte may present as severe now but it two years, she may appear mild, or they could take away the CP diagnosis completely. 

The next is topographical classification. Which means how much of the body is effected. And if the body is weakened (paresis) or paralized (plegic.) Sorry, if I am beginning to sound like a textbook, I'm just trying to help everyone understand what we are facing.

Again we have not been told the kind of CP, and on this classification I am not willing to speculate because I don't quite understand where she would fall. Her whole body is effected but she has had no breathing or swallowing difficulties.  

Time for a picture to break up the information. She has learned to smile at the camera! Take that brain injury! 

Ok, back to the serious stuff...

The third classification is motor function and whether the child is spastic or non-spastic. Spastic CP being the most common form. Charlotte at this time is non-spastic. And we have been told many many times by doctors and therapist that there is nothing about her muscles or body that is spastic.

The last classification is muscle tone. And if you have been following our journey at all you know Charlotte is low tone (hypotonic) also the more rare presentation in Cerebal Palsy. Especially CP caused by PVL. According to research we have done on PVL, Charlotte should be spastic and high tone. But we can never expect anything to be status qua with Lottie. 

The 100% completely original Lottie

70-80 percent of all CP cases are spastic. And from what we can tell Charlotte's CP is ataxic which does not include involuntary movements and only makes up 5 percent of the CP community. 

So if you are still wondering why we are just now coming to an answer on what in the world has been causing Charlotte's symptoms: it makes sense that since she presents much more like a child with a muscle disease and doesn't present like 95 percent of people with brain injuries, that is the reason we have been following many different paths. 

I suppose I could write an apology letter to all the muscle diseases I have blamed. But I won't because they still suck and there are still way to many children and adults out there living with them. Please research MD and SMA. They need awareness and of course money for finding cures.

I could also write a hate letter to brain injury and PVL but I will refrain because I know the brain is doing its best to repair itself. And we still don't know if PVL is the only cause for concern. We are still going through with the exome study and there may be additional diagnoses. I know, groan! 

I will say this, DO NOT feel sorry for us. I will proudly claim special needs mom because that means I get to be Charlotte's mom. And she is incredible! If we think about how hard an average child's brain works just to develop, imagine Lottie's brain doing like, quadruple duty. She is forming pathways that didn't exist and we will be stimulating her brain as much as we can. More intense therapy... Charlotte would groan if she could read this. But she will rock it, she always does. Don't worry though, as much as it would be funny, I won't get a bumper sticker that says "my child's brain works harder than your child's brain." (Insert ackward laugh) 

So KMBC and Kansas City Star, thank you! Thank you not only for bringing attention to a need this city has for parks for all abilities. (By the way, playing outside with friends is one of the best ways young children learn, look it up it's true!) But Thank You for helping me own a new part of our identity and pushing me towards the finish line of acceptance. 

I will continue to have bad days, I know this, I know the stigma of brain damage and physical disabilities is real. I know that those pity smiles I got at Kohls the other day while pushing Lottie around in her wheelchair will still bother me. I also know that the lady that stopped to tell Charlotte that the sparkly wheels on her chair were awesome and that Charlotte was adorable will make me beam with pride! 

So here I am Katie Ireland: Mother to a Child with Special Needs! 

And she is pretty darn awesome! 

An Incredible Morning!

I had the incredible honor of representing the Variety KC parents today in publically thanking the Kansas City Royal's Charities and Glass Family for their incredible gift to Variety and our city. They are building 2 inclusive playgrounds and have an incredible gift of 60,000 dollars!! 

This is the speech I wrote and presented today and some pictures from the event.

Hi, my name is Katie Ireland and I am proudly a Variety Mom. We crossed paths with Variety for the first time in September when we were chosen to recieve a go baby go car. And we are so glad we did! We have found that not only did Charlotte get an awesome new set of wheels but we have found a second family in Variety. Their passion for inclusion is so heart warming and encouraging. And they will go above and beyond to make our children feel special. In my opinion they are leading the way for the rest of Kansas City and surrounding areas. We can not sing their praises enough! 

I want to introduce you to one Variety kid, this is my daughter Charlotte, she was born with severe low muscle tone and developmental delays. We have been on the hunt for a diagnosis for most of her life. In fact this little rockstar had her second MRI just this Tuesday. After many tests, we found outjust two days ago that Charlotte has a condition called PVL and in her case it effects the part of her brain that controls motor function. She will progress but very slowly. Even with out her current diagnosis she has seen more doctors and specialists in her two years than I have in my 30. She is incredible- but she is not alone. One out of 4 families has a member with special needs. 

It is an honor to be here and get to thank The Kansas City Royal 's Chairties, The Glass family and Royals Alumni for such an incredible gift. My husband and I grew up in Kansas City and are die hard Royal's fans! Our children of course are fans too. In fact Charlotte's little brother was born on the first day on the World Series last year and this year we celebrated his 1st birthday during this years series with an all Royal's themed birthday party. We are BIG fans!!  

And to think that Royal's Charities cares for  ALL of our community as much as we care for them is a Blessing!

When Deb shared with me that the Royal's  CHARITIES would be giving a very generous gift to help build inclusive playgrounds for our children, I knew I had to be involved! You see, I have been working with kids for over 10 years and have been to many parks in the Kansas City area, but I did not fully understand the importance of  creating parks for ALL kids until we had our Charlotte. When Charlotte turned 1, My husband and I were so excited to take her to a public park for the first time. When we arrived and tried out some of the equipment, we quickly realized that nothing at the park, including their bucket swings were appropriate for our extremely floppy little girl. It was incredibly disheartening. And we didn't even try another park for at least 6 months. And sadly the second park was the same as the first.   Playgrounds and being included should be a right of passage for every child-to lay, laugh, make friends, explore. So Why was ours excluded?

 This broke our heart. Was my child not going to get to play at parks with her little brother and meet new friends?  

So you see, this is not just about a park to us, this is about living as normal a life as possible and giving our children the same joys that other children experience. The joy of flying to the clouds in a swing or playing tag with their friends on feet or in wheels. Or maybe being able to hit a ball and run or roll the bases. So on behalf of all the Variety parents and special needs parents in Kansas City we say Thank You! Thank you for the joy you bring to our city as a whole and Thank You for the joy you are bringing to and including ALL our Children.

You are setting an example  to all communities to include and Love all our children.  Royals and Royals Charities thank you for believing in Variety Kc and our mission to help Every Kid, Be Active, Be Social and Belong...Thank you for making a difference in all of our lives.