Tuesday, October 6, 2015

Teachable Tuesday: The R Word

Let's have a little fun, whatta-ya say? I thought we could try a little series called Teachable Tuesdays.

Our first order of business is the R-word.

Unless you live under a rock, you clearly know what word I am speaking of so I shall leave it unnamed. If you can't figure it out by the end of this post, I'd be happy to give you a full verbal rendition of the word in discussion... just give me a call.

OK - well, the R-word stinks. I hate it. People that are referred to as such, hate it. And frankly, I am pretty sure even our dog hates it.

So stop using it.

Here's the g gist. We can sign pledges, and share articles and petitions, etc. but the fact is, the word will never go away. It will always be a part of the English language. Sad. But true. I get that.

However, its the people that say the phrase... But I don't mean it towards LB.

Then stop saying it all together. When you do use that word, it's usually in a negative context. You are pushing your disapproval of another person's actions or behaviors onto them by using the R-word to negate those actions or behaviors. I am sure there are so many other words to use. Or here is an idea.. how about NO NAME CALLING. Just sayin. Choose kind. Its not that hard, really.

You are simply dismissing someone with an intellectual disability and that is not OK. As my Granny used to say, "No one died and made you King. So get off your high horse!"

Its hurtful. Mean. In my opinion, the word is full of hate as many other words in our broken world.

So, in closing. please don't say it. Choose kind.


Until next time...

Monday, October 5, 2015

God's Grace

I've told this story before, on the blog too I believe, about a time that J and I were talking about Tootsie and how she prepped us for our life ahead.

I remember it like it was yesterday. J and I were just dating and I was dealing with yet another one of Toots' medical issues. She was a rescued puppy mill Bulldog so you can only imagine the issues she came to me with.

With tears in my eyes, I told my loving boyfriend that God was prepping me for a life with a child with Special Needs. I knew it in my heart. I felt it. Ironicly, J and I had the convo long before this instance -about what we would do if we ever had a child with special needs and we both agreed, we would have our child, with loving arms. We'd love that child like no other. Meet a keeper- Check!

Pretty intense convo for a dating couple.. yea, that's true. But I now believe it was God's Grace that brought us to that point. I believe that he brought us together and we had those conversations because it was his plan.

I have always believed in God. I have always prayed. I am the great-granddaughter of a Preacher. But I wasn't in tune with My God or my religion until the last year or so. Its certainly a sense of calm knowing that he is on our side - what that really means and that its all a part of his plan, thats for sure.

Recently the message at church has been about answering the tough questions that keep people questioning their faith. To answer the things that just don't add up. Kids is always one that kept me wondering. Suffering. That kind of thing.

A recent message - as recent as last week - connected a lot for me. It hit home. It was about God's Grace.

You see, I am a sinner. I have made mistakes and poor choices in my life. Some of which I somtimes felt could have played a role in the chromosomal makeup that God gave my first born. However, I now KNOW that my sins are not paid for by my child nor is her DNA makeup a sin at all.

I now KNOW that she is genuinely a gift of God's Grace and given to me as a sign from God. To show that he forgives and will still love me enough to give me such a precious child.

3 precious children to be exact.

Yea, I have heard all the sayings - God only gives kids with special needs to special parents. Or people that constantly tell me that J and I are this or that... as parents. I know they mean well. I know they are giving us a compliment. But truthfully, it makes me a little uncomfortable.

I am just a parent. I am a mother that loves her kids with all of her being. I was meant to be a mother and I was meant to be LB's mother. As I was Lilli's and Ash's too. I was meant to be Tootsie's Mother as I am to Porsche as well. I do what I have to do. I am by no means perfect, better than anyone else at this role or doing anything special. I am just a mom. That loves her kids.

But if you would've asked me 4 years ago if I believed God  gave her to me... Yes and no. I knew he did. I didn't really know why. Nor did I realize I had such an amazing guide. I have a great co-pilot in J, I have an amazing support system to carry the weight too. But truth be told, He's the one that navigates me; that helps the most and I have one heck of an air traffic controller navigating my friendly skies!

Until next time...

Sunday, October 4, 2015

When I Grow Up

I could sit here each day of this month and write a bunch of stats on Down syndrome, share pics of LB, tell you why you and everyone you know needs to not only accept her, but love her and include her. Or I could go on and on about the R-word, inclusion in schools, therapies and things that she is at high risk for... But that's all been done. Time and time again.

What I don't want to do is get into the same rut I have in years past where I am pushing paper so-to-speak and then I end up bored with the month before it's even had a chance. I don't want to be bland or boring because, to me, that isn't gonna make you remember anything I've said much less make you want to return for more.

I wanna give you sumthin to talk about... sumthin to share at the water cooler or lunch table.

So why not share with you some of the great things people with Down syndrome ARE doing.

20 years ago, the conversations still began with I'm sorry. Doctors often advised parents to institutionalize their children all because they had one more chromosome. Mongoloid was a common term used to describe Ds. And schools were still having issues with even accepting these children into them at all.

While we have come a VERY LONG WAY, we still have so so far to go. It's a journey and certainly not an easy one. So many parents before me have had much larger voices, greater challenges and struggles I may never have to experience because they fought and fought for a better and brighter future for our children. I thank them from the tips of my toes and the depths of my soul for doing such. The courage and strength they had to have astounds me and I am in awe when I meet an elder of our community. If I have met you, thank you. If I haven't thank you even more.

One of the biggest takeaways I had from attending the NDSC (National Down Syndrome Congress) conference last July, were all of the vendors. Sure, there were many that were trying to sell you the latest book or therapy device; some with the best shoe inserts or bikes to teach your kid with Ds how to ride a bike... but the ones that stuck out to me were the vendors that had Ds themselves. These were business owners. These were entrepreneurs who had a  passion and went for it! There were clothing designers, candy makers, authors, jewelry makers, quilters, etc.

Then there were the attendees that you couldn't miss. The 'celebrity status' if you will. The restaurant owners, the actors, public speakers, the "well known" peeps with Ds. I was a bit star struck and had to write all about that time. Check out that post here. (Pics included of course!)

You may have heard of a few of them... Tim from Tim's place. He's a pretty cool dude. He hugged everyone. As said so by the sign in his restaurant. He had a dream to open a restaurant and give out hugs... and his parents help make that happen.

Ashley DeRamus is a clothing designer and travels around the country singing the National Anthem and does various speaking engagements. I had the great privilege of meeting Ashley and her mother at the a conference last Feb. Both were so wonderful and genuine. Ashley's mother Connie gave myself and a friend some advice when we asked what was her secret...what did she do to raise such a remarkable young woman? She said she just treated her like any one else. She loved her as she should and pushed her to do her best.

Madeline Stuart is an Australian model that has now walked the runway at Fashion Week in NYC! That's amazing! Not to mention the countless other models grazing the pages of Targets weekly circular. Then there is also Gigi Cunningham... she's a gorgeous 17 year old that is breaking into the modeling world and defying the nay-Sayers.

Lauren Green's Serendipity beautiful line of jewelry can be found on facebook. She is a business owner too and did so after she was told she couldn't.

Andrew Banar owns Group Hug Apparel. He designs his own t-shirts and sells them. He too had a dream.

Actors Jamie Brewer, Lauren Potter, David DeSanctis, Chris Burke, Blair Williamson ... all making movies and TV shows that have their names in lights.

This is just the tip of the iceberg... just the beginning. To show the world that an extra chromosome doesn't limit you. That you too can live a dream if you set your mind to it. And while the extra chromy doesn't limit you.... the environment around you sure can.

I feel it is so crucial to share every wonderful thing I know about Down syndrome with those around me and those that LB will be around and in contact with. I can't rid the world of the ugly, and I can't shield her from it all of her life. Oh how I wish I could. But I can give her the path to shine in all her glory as God has intended for her to do.

I don't know what the path for LB is ... I am still trying to figure out what I want to be when I grow up. But I know she will do it so well and love life while she does.

Until next time..

Saturday, October 3, 2015

Let's Talk About It

My friend tells me all the time that I speak hillbilly. Being from the great state of KY, I do still have a strong accent most of the time. Especially if I am talkin to my Momma!

For so so long, speech  was one of the biggest fears I had for LB. I never wanted to her to have the issues of communicating her needs, wants, frustrations, desires, etc. I often worried and still do, that she wouldn't be able to tell me if she were in trouble, being harmed or in danger in any way.

Being that she was diagnosed in-utero, we had no idea what to expect. I was rarely around anyone with DS and the pics you google on the internet didn't talk. To be honest, I avoided videos because they made me upset to think that our little baby could struggle her whole life with never feeling understood.

Fast forward a few months in, we bought the entire series of the Signing Times videos. We just knew that our little gal would dominate them and our fears would be eased. Then she hated them. She still watches every now and then and to be fair, she did pick up a few words as did we. But signing isn't her first choice of communication.

As she got a bit older, my fears were my reality. She didn't say momma until she was almost 3. She wasn't able to communicate much of anything outside of her jumbled versions of some words that she thought we were saying.

So I just knew she wasn't getting the proper testing with her hearing. So we had that checked. Nothing.

We were in speech therapy with early intervention, we were doing all that we could to teach her at home. Or it felt like it anyway.

Then we took a break. Or we would have a day off that week from speech therapy and when she got that break, was when we would see some movement in her progress.

Once she was aged out of early intervention, the whole family needed a therapy break. So this summer, she was therapy free for the 2 and a half month. We hadn't done anything outside of school since Dec. We had tried Gemiini.org as a tool at first but we weren't seeing any movement in her interest and then she started to loathe them as she did the Signing Times.

It wasn't until last this summer that I started to see a HUGE change in her. We discovered you tube for kids on her ipad and once she found some nursery rhymes she liked, she was OFF! The next thing I knew, she was saying words left and right.

Now, you throw on Frozen, she is all over it. But that gal now hits her words strong. She attempts almost every single word, tries to imitate what you are saying, reads WITH you... it goes on and on. While its great progress, we have a long road ahead.

She still has issues when forming her words and most people don't make out what she is saying as well as we do. But she is getting there. We are back in formalized therapy and she's killin it there too. Their most recent assesment put her at a 2.5 yr old level for understanding and verbalizing. I would agree with that. While it's hard to see sometimes, I know its accurate and a very fair assesment of her abilities.

This is also where the water meets the road and the other kids start to notice the differences. When the language is different, children notice. This summer, we attended a birthday party for a neighbors daughter. This little gal and our gals play together at playdates, etc. so they are familiar with one another and play well together in those instances. At the party, the birthday girl was playing mostly with her cousins and other friends and much less with the girls. One of the older girls was playing with a scooter that LB wanted. When the girl wasn't understanding LB as she was asking for the scooter, LB shoved her off - gently - but as in a way to say - hey, I want a turn. When you have no words, you use your hands, right? This girl was obviously greatly upset and expressed that. Rightfully so. So I took LB to the side and told her she couldn't use the toy at that time and to apologize. In her eyes, she didn't do anything wrong really. She was just asking to play with the toy. This happens often. Its tough to deal with because you want her to be expressive but with words.. not actions.

At the same party, there seemed to be another little gal that was kind of playing on her own. She and LB clicked very well. I had never really witnessed her play with another kid as well as she did with this little girl, including her sister. Then I heard the little girl speak and I noticed that she had some speech delays as well. My heart welled up with pride. It was like they were meant to find each other that day and found such comfort on their own, they didn't need words. I kinda wanted to get the moms number and ask her to bring her daughter over but I didn't. I did howver thank her for raising such a sweet gal. (As my tears welled up in my eyes again.)

Its for these reasons that I push LB's speech. That I ask all family members to pronunciate. To say the full words and not use baby talk. Because just because you can't understand her, doesn't mean that she doesn't understand you.

Kids are cruel. Language and speech are their first tools and their first weapons when it comes to other kids. It stinks but it's the truth. That's the inclusion I want her to have. Friends that get her. A way to express herself. A way to communicate with everyone so that she feels free and connected.

Sadly enough, speech is also one of the greatest challenges for those with DS. Here is a great read from the NDSS on Speech and DS. It truly is a journey.

While I am no longer as much as in fear, I do still greatly hope for LB to develop better communication skills. I dream of it and I see her face light up when I understand something, or get what she is trying to tell me. I want to be able to have a full convo with her so that she knows I understand her and I am always her to talk to and through with her. I also want to eliminate the isolation and loneliness that has to come with poor communication. I breaks my heart into a billion pieces to think she feels that way.

So, with the help of a fantastic speech therapist and a great team to support her, we are going to pronunciate and accentuate and coach every day....

For now, I will relish in the fact that she says, "Hi Momma. I uv uuuu"

It melts my heart every. single. time.

Until next time...

Friday, October 2, 2015


Each year, hundreds of local associations gather to have their annual fundraisers in the form of a walk, run, 5K, dash, etc. Many of them fund the national organization, NDSS with their Buddy Walks. In years past, we have taken part in a walk with our local DSA here in NWI.

This year we are switching it up a bit due to some scheduleing issues and also the need to take our show on the road. This Saturday, we will be participating in the Walk to Independance benefiting the Down Syndrome Louisville.

I am pretty stoked about it because we not only get to walk in my hometown, but we will be able to have my family join us of which doesn't happen often.

We are unbelievably blessed in so many ways. This year, as well as in years past, we have had so many people come together in donations or support to show their love for LB and our family. To say that we are grateful doesn't seem like enough.

The DSL is a pretty cool organization and one of the many reasons I LONG to move back to the Ville. While its not in the cards for us at this time, I do plan to keep LB involved in some fashion so that she may have many opportunities wherever she may want to go in the future.

I'd really love to visit a new walk each year. Just to check them out. DC and our local walks being on the regular each year, of course. I mean while we are dreaming, let's just say that it would be pretty stinkin cool to get LB on the Times Square jumbotron one year too.... anyone, anyone?

Which brings me to the meat of my thoughts. This past week, we had the honor of attending a walk in Leighton's honor alone. All to herself. J's elementary school does a fundraiser every single year for our gal and the kiddos raise money as well. They bring thier change in and hang signs all around the school yard. Then all of the kids run around it like crazy and crowd around our girls like they are genuine celebrities. It's pretty cool and I cry every. single. year.

I am so blown away by the goodness that we have in our lives. It means so much to me to see that so many people love our family and take the time out of their days to do such a nice thing for us and our girl.

Thank you Miller Elementary for your time, kindness and giant hearts.

If you would like to join us or to simply share a donation, please feel free to do so here. All of the proceeds will go to benefit the DSL.

Thanks again from our family to yours!

Until next time...

Thursday, October 1, 2015

Is she a level 1?

We had a yard sale this summer and one of our customers asked me if LB was a Downs level 1. I knew what she was talking about but I played the confused card and asked her what she meant by that.

I wasn't trying to be a PITA, I just wanted to understand her thought process. So she explained to me that she had a niece that was (in her words) Downs. I shuttered a bit. And then she explained that she was in her 20's and her sister was told by the Dr. when she was born that she was a level 1. The classification was based on her perceived ability of functions in the future. When she was born. I'll leave you with that.

When I told this lady that her doctor had misinformed her sister, that there is no level classification. You either have the 3rd copy of Chromosome 21 or you do not. She seemed a little shocked that I would say something like that but then went on with the explanation of her niece. She loves boys - she said. She's boy crazy.

I said that was lovely and went on about my day.

It was a strange encounter for me. I wasn't sure I could pinpoint what actually bothered me the most. I don't like to hear assumptions about girls with Ds, aka, they are boy crazy or flirts. I mean aren't allll girls to some degree? That gives me anxiety. I also have a STRONG hope that LB will not live up to any of them. So far, we are striking out. But I don't want her to be boy crazy. Mostly because I don't want her heart to be broken as I don't want the other 2 to have a broken heart either. But mostly for safety reasons I am scared for her to be boy crazy. I don't want her to be taken advantage of and not be able to ask for help or tell me that someone has hurt her. I am sure to talk more about this topic over the next month so I won't dive into it too much here. Or was it the fact that this poor mother received so much misinformation? How can you tell the function of a person AT BIRTH? Or the non-chalantness of me telling her the proper terms and correct information as it pertains to a child that she's clearly known much longer than I have been a mother? The options of disappointment were endless during this convo.

I have to say, I am getting better. I am no longer so quick to correct people when they say Downs or Downs babies. Admitedly, I cringe on the inside the entire time. But I no longer get so annoyed that I don't try to hear them out. Ultimately, I believe that many - not all - but most of the people are trying to learn something or share a commonality about Down syndrome and or LB. She draws people in, that's for sure. I also want to believe that the world is full of mostly good. Sprinkled with a few rotten ones of course. It's my bubble so I shall live here as long as possible.

Given this first day Down Syndrome Awareness Month, 4 years into this wonderful ride, I find myself with a much thicker skin. I am certainly more tolerant, accepting and understanding but I will also take every chance I am given to educate and advocate for acceptance should the opportunity present itself. Which is the very reason I sit here writing this.

I trailed off from blogging for such a long time because I wasn't sure if I had a voice to share anymore. I wasn't really sure if I had a place. Funny enough, I had a hard time not comparing myself and my writing to more established bloggers with much younger children. But that's the number one rule in being a Mom/parent. NEVER COMPARE. It's the Golden Rule, right? I really felt like a giant hypocrite - here I am asking others to treat my daughter the same, and I wasn't allowing myself the same justice.

Well, I have dusted off my sadle and my wounds seem to be mended. Back on the high horse I will go to sing my song, advocate and share MY voice for MY daughter.

By the way... there are no levels. No labels to say if she will or won't do anything or what to expect for her future. But from what I remember, I never got one of those handy manuals with the other 2 either. If you did, please invite me to your secret club. I beg of you.

Here's a slice of our life... one day at a time. I hope you will join me for another year of 31 for 21 as I blog every day for the month of October. To spread awareness of the need for acceptance; to change perceptions of what it means to have Down syndrome and to make everyone see that all lives matter.

Oh yeah, and some cute pics of this gal.

Until next time...

Saturday, September 19, 2015

What is "Special" anyway?

Have you ever been lumped into a group for whatever reason and somehow don't feel like you really belonged there? Or that maybe somewhere along the way, someone misunderstood what they were classifying you as. Maybe they didn't understand the definition or didn't understand you.

For a while now, I have pondered the term Special Needs. What does it mean exactly? By definition it means:

special needs

plural noun
the special educational requirements of those with learning difficulties, emotional or behavioral problems, or physical disabilities.
(source: dictionary.com)

While I get the actual definition, my unsettling feeling is that the actual label varies by such a large range to those of which it is given that I can't really grasp the ability to allow this title to adapt to our family or to LB.

Until lately.

You see, I have a few friends that have kiddos that are completely non-verbal. Both of which are wheelchair bound. One Mom is a single Mom and she has never heard her teenage son say Mom. While my other friend spends more time in the hospital with her gal than she probably does at home. These moms are Special Needs Moms. They deserve the title. They have earned the privileges and additional support that comes with such classifications.

So for these reasons, I have a hard time identifying myself as a "special needs Mom" in the sense of the word. However, the older LB gets, the more adaptable we have to become to her needs and her challenges. The more aware I am becoming to her disability and what that means for her daily struggles and future.

Let me explain a bit more. Until the last year or so, she was this adorable little baby that gave soft hugs and waved to everyone. She may have had a messy face because of her poor ability to feed herself well, but that was OK because she was "just a baby." Or that she wanted to hug everyone she saw was OK because she was "just a baby." She wasn't doing this, or that or did this too much or she wasn't strong at that... it's OK, she's "just a baby."

Over the course of the last year, it has really hit me. Maybe it's the fact that she's almost doubled in size and we are still changing diapers. Or that we are at the highest size in diapers and she isn't really interested in potty training. Or maybe it's the fact that her listening skills and following directions aren't where we want them to be coupled with the fact that her strength is also greater.

OMG, she's no longer, a baby.

She also has a younger sister that is paving the way of all the things that she SHOULD be doing at her age yet may not even be on our radar for her yet. Of which I should also coin as her own "special needs" that can be just as exhausting!

I know, I know, I shouldn't compare, but it's a natural form of parenting. You see, I have great expectations for all of the people I meet. My children are no exception. Myself also being at the top of that list. I know my girls will do great things because they have a wonderful support system and a determined momma to make sure of so. But that's a discussion for another day. I just want to know that I am doing all I can for her. That she has every opportunity in the world to make her the best version of her. To make her as independant as possible.

Back to my original train of thought....one mom of a young adult male recently told me, "Services are plentiful when they are young. But when they are older, its much harder to find the groups and participation from other families because it just isn't there." Or the other mom of an older adult who's son is showing signs of Dementia at just 34, "Enjoy her now while she is young because when she is older, it isn't as 'cute' anymore."

While these comments may seem depressing or sad to some, I see where these moms are coming from. They have walked many years in a fight. They have pushed the limits and fought systems to get their kids the services and support they needed when support and services were hard to come by, if even available. All while taking care of their childrens' daily needs. The therapies, early intervention, the school systems, the day to day tasks of taking care of someone that can't do it ALL on their own. As they got older, and became bigger than their mothers, and probably much stronger too, these women fought and continue to fight to see the best out of their kids. Searching for playdates and friends and testing for all of the medical things your child "could" be susceptible to. Navigating the insurance companies alone could be a full time job. It's a lot of work. It's pretty exhausting on some days. But these are the "special needs."

Recently I called to make sure LB was still on the waiting list for the Medicaid Waiver. In the state of IN, you can get on a waiver program that helps with services and costs of various needs for the individual. When I was working, and when LB was born, I had phenomenal insurance so this convo didn't phase my arrogant mind of what it could really mean for my family. Fast forward 4 years and now I see what this program could provide for us as we anxiously await the final call. It means a great deal now that our insurance isn't so great. And we have 2 additional kiddos. Oh and to have them provide a sitter for LB just to give me a break, means so much to me. Because I was also, and really still am, the mom that thinks I can do it all. I sure give it a helluva run and always will! But a break now and then is a nice welcome.

So, I guess where I am right now is learning my role. What does Special Needs mean to me and how has it going to change my thoughts and actions? I knew all along what it meant to my daughter. I knew what I was 'supposed' to do. But reality feels much different than my planned course of life on paper. So, if Special Needs is now the group we are a part of... I am guessing I have a front row seat. And I am learning to adjust to that. I am learning to be OK with that.

While it wasn't the journey I originally planned, I sure do like my tour guide.   (sorry, couldn't find the original source.)

And if given the chance, I wouldn't change a thing about her.

Until next time...