Confessions from a mom with a daughter that has Down Syndrome

I have to let you all know that I typed this up over 6 months ago!! A lot has changed since then, but posting this now just felt right!!

Over the last week, I have had this nagging feeling that I need to write this! I need to put this out there!! As, most people know my oldest daughter has Down Syndrome and she is 6 years old and on her second year of Kindergarten. I am an open book. I am that mom that says take me as I am or leave me be. Everyone knows about J and they know I have another little girl that is "typical." (Or as typical as kids can get!) But here is the thing, there is more!

I want to confess something, something that not many people know... I feel bad! I feel bad for all those people that have been in my destructive path the past 6 years! I feel bad that J was never able to grow a friendship with two little girls that were born about the same time as her because I was not able to have a friendship with their parents due to my grieving over the loss of the child I didn't get. I was selfish, I wanted a typical child like they got and it was hard! I feel bad because once I came out of that period I didn't know how to reach out and try to restart those friendships, I was lost and so I just said, "Forget it, I don't care!" Even though I did. I cared deeply! I wanted my old friendships back.

I feel bad that I have not had a constant job over the past 5 years. I have dabbled in many different areas and have loved a lot of them, but I was never able to stay due to other circumstances! I want to be able to be there for my kiddos, which means if a meeting comes up or a class party I want to be able to go! Coming to the realization that I have to be a stay at home mom and make that work, has taken me through many different jobs and brought me across the path of a lot of amazing people. I feel bad because I loved being an office manager, but cannot go back due to the need of a flexible schedule and I could never ask the owners for that and feel good with myself. They have a business to run and that would not be fair! But I am so happy where I am today! I get to work out of my home and help change peoples' lives by introducing them to Norwex or help them give an amazing cake to someone special! Though, I feel bad because my husband works so hard and we don't have consistency. It is hard! I just keep reminding myself that I am doing what is best. I get to pick up J, talk to her teacher and find out how her day was. I get to take her to speech and learn how to help her grow in her communication skills and I get to be at her classroom parties and her sister's parties and no one feels left out. It is what is best for our family!

I feel bad because I get defensive over words and looks. I want to be able to go through life and just see my children happy and able to make friends! But, sometimes when I go to parties for other kids, I just see the looks they give J and wonder how I can educate them. Knowing that for some kids, no amount of education is going to make them see how wonderful my daughter is! I once had someone tell me that not all parents want everyone to know that their child has a disability, like I do. I was so hurt that day, but I look back on the time in my life when the comment was made, and I know that the person saying it did not mean to hurt me and I feel bad because I pushed people that made these type of comments out of my life. However, I want to make it clear that my daughter wears her diagnosis on her face and no amount of shaming or belittling will ever change just how amazing she is.

I feel bad for other parents that don't have a child with a disability when I have to point out that their child may have done something that was not nice. Not because those parents are bad parents or because their family has intolerance, but because their child just does not understand and needs to be helped to understand. Those parents, whose children go to school with my daughter and just want to help their own children to flourish and grow! They just want their kids to become amazing, successful people! They didn't ask for my daughter to be in their class or their groups. They just wanted to give their children a "typical" school experience and my daughter has to come and muck that up. I have to step in and say, this is the new typical for all kids. Diversity and learning how to treat all people, no matter their ability is the new normal and I feel bad because those parents just don't know what to say or what not to say all the time, so they ignore. I get it and I love them all! I could put here what I want to hear or want those parents to do, but on any given day it could be different! I just ask for all parents and their children to treat our family as you would want us to treat yours! The golden rule! We have been blessed with amazing families at Jenessa's school! However, we will always have those parents, no matter where we go, that don't realize that we are a family and we are human just like them! We celebrate when both our girls succeed and cry with either of our girls are hurt.

I feel bad for our youngest because she is growing up in a hard spot! The other day she was so cute and so heartfelt and told us that when she gets older and can live on her own she wants to live with J!! Josh and I said ok honey that sounds perfect! And I thought oh honey, I would love that, but we just don't know what that would mean if it was to happen. As it is, Clarissa feels she needs to be a "mom" to J and I wish I could tell her all the time that she didn't, but sometimes we need help and NEED Clarissa to watch over Jenessa! And as the youngest, she shouldn't have to watch over her sister and I feel bad because she knows she does, even though we do not tell her that she does. I can already see her blossoming as a leader and a helper! She just wants to help everyone and I feel bad because would she if she didn't have J to "watch over?" Would she be a 4 year old going on 15 if she didn't feel a little responsibility from having a sister with a disability? I feel bad because I want her to be able to be a kid! I hope that she is getting to be! However, I have to say I am so proud of her because she is growing into such a strong leader! We have stated that she is going to change the world some how! We just don't know how yet! So, I am not sorry that she is becoming strong willed and compassionate!

 And I feel bad because my daughters are growing up in a society that still does not accept everyone for the true person they are inside! We still judge based on others look, talk, and materialistic things. What I want for my daughters is for them to always be happy with who they are on the inside and not feel constant judgement for things they cannot change, such as a diagnosis!

And finally, I feel bad because I am not sorry for being "That" mom! We all know the mom I am talking about! The mom that fights for her child's rights, even if it means upsetting the professionals! It means that I do stand up to other parents if their child is not being compassionate, no matter if it is to my daughter or another child. I will point out to a professional when their actions are not appropriate. I feel bad for all this because at one point and time, I was the professional, not doing what I really needed to do because as a teacher there are a lot of things on your plate to take care of! I am not sorry though because no matter what the most important thing to me, is my daughters! And I will fight for my daughters' needs to be met!

Birth Story

Happy Down Syndrome Awareness Month!! I had the honor of sitting down with a good friend and telling her about Jenessa's birth story!! As a mom of a child with down syndrome, I just love being asked if I knew Jenessa had Down Syndrome (DS) before being born. I love it because I get to tell them, NO!! And then see or experience their reaction. This may sound awful, but it isn't because before having Jenessa, I would have been curious!! I would have been curious as to what you do when you find out your brand new baby has a "birth defect" on that can't be fixed or taken away. What do you do when you find that out!! When do you find that out?? Do you know when you see your child in your hands, or does the doctor tell you?? What is the process!! And I love being asked because all of us moms have a different story!! Some did know ahead and I have met one mom who didn't know for a year!! We all have our story!! Please ask if you ever want to know. We are truly happy to share (well most... :) )

Anyway, so my good friend who was dying my hair blue for Jenessa's Buddy Walk asked me the infamous question of if I knew ahead of time. When I told her know she asked all the amazing questions that show me someone truly wants to know our birth story! Here it is:

I was a week early, but ended up at the hospital at midnight that Tuesday morning. Some pretty hard contractions brought us in and when the nurse told me I was only at 3, I almost hit her!! LOL... So skip to the dramatic part... Doc comes in to check me at around 6:45am... he tries to get that stupid heart rate thing on her head... twice!!! (If you don't know what I am talking about, google it! You will understand my dislike of it) Much to our unknowing Jenessa had a LOT of hair and it wouldn't hold. So, he has to monitor her heart rate with my belly monitor. And Jenessa's heart rate suddenly dropped significantly! Like from 130 down to 93. Very scary as doctors and nurses all of a sudden are next to pushing your husband over so they can talk to you about an emergency C-section... And of course, my nurse did not make me sign that waiver because she was awesome and knew our birth plan was no epidural. I did not want a needle in me!! She had given me some IB profren so I could get some rest, but nothing more and that was due to the severe back contractions.  So with all these doctors and nurses surrounding me, I get to sign a waiver saying I understand what a c-section is and then they whisk me away from my husband and into the OR. They then tell me they have to give me an epidural... while I am having horribly strong contractions. They don't have any time between contractions, so I am told to just hold my baby and don't move! Oh ok, that is easy! ;)

They get that done and then I lay down and they get everything ready and someone hollers about daddy not being there... Docs don't care they start cutting and no the meds had not kicked in yet! LOL  I let them know, they stopped for a second and then started again. Enough time for Josh to be able to come to my side. They get her out and she cries and they take her over and give her oxygen... I have pictures of this and do not remember it. To be honest, I don't remember much from the OR, except Josh bringing our brand new little girl over and showing her to me and me going, "OK." And then going back to hoping they would get me sown up soon. LOL I was a little doped up by then. Doc's comment was it doesn't take as long to make the mess, as it does to clean the mess up! He is a funny man!!

I then get rolled back into my room and am ready to meet my little girl! Josh hands her over and I look into those beautiful blue eyes and freeze with fear!! I see it... I see something that isn't right in what is supposed to be my perfect blue eyed beauty!! So I close my eyes and look again and don't see it the second time. I calm down and think it is all in my head. I let her lay on my chest and just bond with her. I have waited so long to meet her and finally she is there. Brown hair, not blond, but I guess that is ok. :) She was my baby girl!!

Josh headed home and they took Jenessa to do some blood work and basically let me sleep. I dozed in and out of sleep, but I came too and Josh wasn't back yet, but Jenessa's doctor was in the room and he didn't look happy. Not that I would know if this was normal due to this being my first time meeting him. We were a little behind on the finding her a doctor thing before she was born!! So, he introduces himself and tells me, (with no Josh in the room) that they have noticed some signs that may indicate down syndrome and are sending her blood out for tests. I look at him, as calm as can be and say, "I wondered" Wow!! Where did that come from! He excuses himself and I grabbed my phone and called my mom!!! I was calm until I had to tell her... I tell her a loose it! I cried and sob, "Mom I never thought God would think I could handle a child with a disability!" See, when I was growing up, we had two ladies in my church who had down syndrome and then my cousin has CP (Cerebral Palsy) and it was a common conversation for my mom and I to have that, "Mom what if I have a child with a disability? Will I be able to handle it?" And my mom always comforted me and stated the same thing every time, "Honey God only gives us what he knows we can handle" And on this very fateful day, I didn't want God to think I could handle a child with Down Syndrome! I wanted a typical child! The one that I was supposed to get!! That I had been planning on for 9 very long months!! And my mom, being the wise and very supportive mom she is stated, "Honey, he doesn't make mistakes. It will be ok." As she talked through tears, I just wanted to get off the phone. I wanted my husband. He was my next call. I let him know he needed to get back to the hospital. I am not sure if I told him on the phone or not.

I know that day there were a lot of tears, but I am going to be honest, I don't remember much about it. I remember I called my school and let them know that she had arrived and that she had Down Syndrome. I think I called my sister as well. But mainly I clung to Jenessa. We found out she had some jaundice and had to be under the lights and I am going to be honest, I am not sure how she every over came that because any time I could I was holding on to her!! She was my savior that day!! She pulled me through!! I also have an amazing husband that held me up and helped me through as well.

We officially found out the next day, via her FISH test that she did have Down Syndrome. The most common form of Down Syndrome and no it is not an inherited thing. We got a great education and talked with a very nice Geneticist, whom if we realized how much we were being charged for her to be there would have asked WAY more questions!! :)  After she left, I turned to Josh and I said, "What does this all mean for us?" And my wonderful, supportive and amazing husband stated, "This means we get to have our daughter at home with us longer than most parents!" And that was the best thing he could have said!! It was just what I needed to hear! I had been hearing all these things about delays and slow cognitive development and on and on and on... And here he comes with we get to keep her longer!! Such an amazing response!

Josh and I continued that day to hold each other up and we were so grateful to those who came and visited and gave us a distraction from the diagnosis! We had great family and friends who wanted to come and help us celebrate the birth of our beautiful child and I always tried to keep that in mind.

I was so excited when 2 days after Jenessa's birth, we were allowed to go home! We got to go home and be a family... not the easiest of transitions, but we did it! And all I wanted to do again was hold my little girl!! :)

Oh yeah and on a side note... I found out years later that after making that call to my mom, my mom called my sister and told her about our conversation and my mom told my sister, "I didn't think God would think she could handle it either!" LOL I love the true honesty of my family! We all know that I am not perfect, but God gave me the best gift ever and he knew that I couldn't necessarily handle it, but that I needed her!! The day Jenessa was born was the day that truly made me into a much MUCH better person!!

Open Forum letter to the lady or gentleman who decided to judge others

Dear Sirs or Madam,

This is that mom that you saw at the store... ya know, the one that screamed at her oldest because she put yet another thing in her mouth... What you don't know is that said child had already been asked about 20 other times before this trip and then another 5 during this trip to not put things in her mouth. Oh yes, I am sure you as a parent would never let you child do that... let me give you a little back ground, said child has an oral fixation... meaning we and our family have spent way too much money on teething necklaces that have been lost by said child. Oh and then you see her start to cry, and her little sister console her. And mom then has to ask if she has to go potty because, even though she is potty trained she will have an accident if she gets too upset and mom forgot clothes on this trip, so she is begging said child to just tell her if she has to potty as she is loosing her mind with tears. Please judge away! :) 

Yes, we parents see you and I have to admit I have even been you. Judging those OTHER parents that are doing things you would NEVER do!! Such as, I would NEVER let my child watch a tablet when we went out to eat. Oh wow, I cannot even believe those parents are letting their child do that and not teaching them how to eat in public appropriately! YUP said those exact words... Now, I don't even go out to eat because I know if we go someplace too loud my daughter will end up loosing her mind or getting very anxious and we will have to leave because she will want to constantly get out of her seat... Yup, I am now a parent that if we go out to eat and my daughter gets anxious I will whip out my phone with whatever pre-loaded show that I know will calm her. 

Here is my lesson that I think all judge mcjudgy pants need to learn. You do not know what situation that person is in. Maybe the mom that is letting their child yell at the top of their lungs in the middle of No Frills, has not been able to get her child to make any noise, let alone talk and now she is just enjoying the sound of her beautiful baby's voice! Or that mom who totally loses her temper and yells at her kids for fighting over a toy, as she is getting her groceries in walmart, is only here because she had to get out of the house after taking care of her kiddos all week without her husband who has been gone for over two weeks and she had to get groceries. Now she just wants to be done and back home so they will no longer have to be in each other's space. 

As, my husband and I have learned there are never clear right answers when raising kids or in life in general and one that I do know is clear is that those who judge, have no concept of what they are judging. Sure you may have raised three kids of your own or you may have lost a lot of weight and are no longer over weight and now you feel obligated to judge those who have not done what you did or who are going through what you have been through. Please think twice. We all have our own battles and are doing the best we can. Maybe it isn't how you would do it, but that is ok. 

Thank you,

That parent who feels like some days she isn't going to make it or is a horrible parent! 

My Baby Girl is 5!!!!!!!

So, it happened... our beautiful little girl turned 5 today!! It was so funny this morning as I watched the clock tick by as we were getting ready for work, I saw it hit 7 and thought oh this is when the doctor was checking me, then 7:10 and thought, this is when they were trying to get me to sign paper work saying I understood what a c-section was because, well HELLO we were heading there due to our sweet girl's heart rate dropping too fast and too much. Then I saw it hit 7:34 and wanted to cry a little!! This was the time that I became a mama for the first time ever! Of course I was so doped up on drugs that I don't remember much of it, but I do remember the first time I saw her and all I wanted at that time.... was to get sewn up so I could sit up and hold her!!! They then whisked her and my hubby away and I got to see them once I got back to my room! Thank goodness for pictures or I would not have a clue what went on in that O.R.!!!
It is a strange feeling realizing that at one time you didn't have the things that make you so completely happy!! And trust me, I CAN imagine my life without them, but I wouldn't give them up for it!!
So we celebrated Jenessa's birthday on Saturday with close family and Jenessa's friends! Jenessa got to go bowling for the first time!! And she LOVED it!!!

She wasn't so keen on the whole letting all of her friends bowl before she got to go again, but she got used to it!

The best part of Saturday wasn't necessarily the bowling or the cake or the presents!! The best part was seeing Jenessa with her friends!!

I know it is every parent's fear that their child will not be able to make friends, but add a disability in there and it becomes a nightmare!! (Will she ever make friends and will those kids be friends with her because of her or because they feel sorry for her. Will she remain her friends as she gets older. What is they secretly are picking on her and we don't know. ) Ok those are just a few and I am sure my mom friends can add a hundred more!!

To see all of her friends and see how they interact with her and love her, I was just too happy and overjoyed!! As an example, Jenessa has a friend from school who is also in her dance class that she is taking, we will call her P. Well P was there on Saturday and you could just see the love between the two as friends!! If P would fall, Jenessa was there to help her up and if Jenessa was upset P was there to cheer her up!! I was just so happy to see such a strong bond!!

So, I am still a little overwhelmed with the fact that Jenessa is 5 and we have been doing this crazy thing called parenthood for that long!! But I know without her and her sister I wouldn't be nearly as happy and fulfilled as I am. (not saying that everyone should have kids to feel this, just saying that I have always wanted this and I am so grateful to be experiencing it!! )

By The Way... Thank you to all of our family and friends that came to Jenessa's party!! We had such a good time and I KNOW that Jenessa enjoyed it!! She was so excited she was giving hugs like they were candy!!! So thank you so much for making my little girl's day a little more exciting because you and your family were there!! Love you all!!

Reflections

Ok, the girls have this princess sing along video that has the Mulan "Reflections" song in it!! Which goes, "Who is that girl I see staring straight back at me?" It goes on too, but I love that song!! It asks a great question!! I hope for my girls' sake that they are not like their mommy in the area of knowing who they are! I still don't truly know who I am!! I know I am the luckiest girl in the world because I have two of the most amazing little girls and a wonderfully supportive husband! But I look back over the last two years and being a financial advisor, (which by the way is a far cry from a teacher) and love the roller coaster ride I was on!! I also loved all the people I met through it!! But I know that it was not the best path for my family!! But then neither was being a teacher!  I wanted something that allowed me to be with my girls completely!! Though I had always wanted a job that I could reach people and make a difference I just knew in my heart of hearts that I wasn't going to be able to to be the mommy I wanted while working those jobs! which I had wanted to be from 2nd grade through my freshman year of high school!! What I have realized is that I can change the world, for two beautiful little girls!! And I can help teach these two beautiful girls how to change the world!!
Our world from the past two years, is finally slowing down. I have taken a job as an office assistant to give my family a constant paycheck. My youngest daughter has become my biggest fan and will call out the BS!! One day I put my coat on and she looked me square in the eyes and said, "Mommy going to work?" In the most accusatory tone!! Wow!! Thankfully I was just going to get the mail, but wow! She was going to make sure I spend the appropriate amount of time with her!! I have learned from those jobs of not being home at night what is really important!! I learned that my girls are the most important things to me and I just want to be able to give them what they need! I want to be able to let them have dance classes or for Jenessa to participate in Hippo-Therapy or whatever else she needs! Or just to be able to be a mommy on the weekends and spend quality time with them and not have to worry about work!
Ya know, I have always known from a young age that I wanted to be a mommy and I love being a mommy! And maybe that is truly who I am! Maybe when God blessed my parents with a third, unexpected, unplanned for child he knew that I was going to be the mommy to two beautiful girls and that I was going to make a difference in this world because I helped to make them strong independent women!! Or they could be the death of me and run my exhausted so I learn to appreciate sleep! I am not sure, but what I do know is that they are both stubborn, manipulative, sneaky, curious and intelligent little girls! I do mean all of those traits with a positive connotation! And that to me means that even though the odds are against J ever moving out or going to college, she will!! And that even though C is the spitting image of me in most all respects, she could still become a world famous singer, lawyer (which she would be great at based on her argumentative skills already!) doctor, teacher or a mom! And they will both do it all with great independence and self perseverance!!
I am so glad to be the mommy of two amazing girls! Glad to have found who I truly am!!

Mosaic and not the tiles!!

I sometime have days that are just hard. I know that I am so blessed and I have a wonderful family! My daughters are literally the light of my life!! But some days are just tough and today was one of those!

I had a great opportunity to go to MOSAIC and for those of you who haven’t heard of it, it is a community or none profit organization that helps adults with intellectual disabilities find their place in this world. That is one of my biggest worries for Jenessa is when she is an adult, how is her life going to be? Will she have a fulfilling and productive life and how will we make sure that happens for her. We have come up with many plans and ideas, but we always wonder.

So today I went and toured one of the Mosaic Facilities and learned about the history of Mosaic and what they do. I also had the most wonderful tour guide, who happens to also be apart of the Aktion club that I have been helping out with. I got to hear his story and then a story that was so touching and hit me right in the heart. It was a mom of a young man with down syndrome. She talked about his first days and months there and how he hated it and hid in the closet because it was too loud and overwhelming and my heart just bled because it reminded me of Jenessa and how she gets in new places with a lot of people. Then she went on and told about how he has blossomed since coming there and told of his story, which I will never do justice for, but it hit me hard! It was a story of a mom who loved her son very much and just wanted what was best for him and through this organization he has come to find himself. He has a job and learned to tie his shoes and now gets speech therapy, which he never had before.

I then got to talk with her after and she told me the story of his birth after I had asked if she had ever been told by a professional that she should institutionalize him (he is 41 and I know at the time, some doctors did) Anyway, she was so passionate when telling me her story and I could just feel the love she has for him and even did then! No one was taking her son away; she didn’t care if he had 10 heads!! I loved it! But this whole experience made me face reality! I would love to live in denial and say Jenessa is not going to need these type of services and that she will be able to have a job and get married and do all the things that most people can. But I cannot say that she will be able to. And on the way back to my office, I cried. I cried because my daughter gets to go to speech today and we have the services we have now because of mom’s like this lady and I cried because I was so tired of being strong all the time. I just cried the most cleansing cry. It was an honest I want that for my daughter, but I don’t want her to have to have that. (Not sure if that even makes sense)

Then on my way to pick up Jenessa for speech, I called my sister. One of my many rocks when it comes to Jenessa, and I told her about my experience at Mosaic. And again I cried. And out of everything that she told me the one thing that stuck out to me was, “But WE are doing what we can to help prepare Jenessa and help her to not have to use those services. And WE are there for her if she does.” And then I remembered that I am not alone in this journey. I have family and really good friends that are here to help me when things just get to be too much. Jenessa has a huge support system and it is not just me, my parents, my in-laws, and Josh and my siblings it is so much bigger!

I then went to help with youth group tonight and the song that was playing was just perfect! It talked about out of darkness there is light and to just trust in God. Then our youth leader spoke on having faith and that through God all things are possible. She also showed some videos about trusting in God and leaning on him in times of pain.

It just is so amazing to me how God has blessed me with so much in my life!! I literally was having a blah day and though a 10-minute conversation with my sister and then an hour at a youth group, as a volunteer, I was brought up out of my funk. It was as if God was showing me that we all have hardships, but he has put people in our lives to help us though them! We just have to open our eyes and hearts to other and not try to face it on our own!!

So, as I have said many times over, thank you to our support systems that we have!! You really do not know how much we need you and are so grateful for you in our lives!! Jenessa is an amazing child and the fact that she has brought so many wonderful people into my life, is truly amazing!! I know God has a purpose for her and her mommy and he is not even close to done using us as his tools!! Thank you!

Spread the Word to End to Word

So this past week we had the Spread the word to end the word, end the r-word campaign. (by the way the r-word is Retard) Josh and I had a situation come up, which caused me to unfriend someone on Facebook. But I just wanted to address that I understand some people feel that we are just being sensitive or we are trying to be the word police. I have also heard that we are just being too P. C. . But I have been thinking about it a lot this week. I had someone post on the actual day of spread the word to end the word and comment about not worrying about zombies taking over the world, the f*@%tards would beat them too it. (or something like that) Now this person has been involved in our daughters life since the day she was born. I was just shocked and a little surprised to see this post.
And I don't think I should be. I mean honestly, I used to use retard all the time. I was a mean young lady when it came to how I treated those with disabilities. Now in my defense it was 100% ignorance. I wasn't mean on purpose, please don't think that, but I was ignorant to why the young ladies at my church with down syndrome acted the way they did. I was ignorant to who I was really hurting when I called someone who was acting in an unintelligent manner a retard. I have the greatest 20/20 vision looking back on my past, but I want to help others understand why to people that have intellectual disabilities retard is such a hurtful phrase. 
So, up to 3 or so years ago mentally retarded was an acceptable medical term to describe Jenessa and those like her. Now I want to ask you... Do you think Jenessa is mentally slow?? I had to ask myself that question when considering to write this out. And to be honest my answer is NO!! That child can figure out how to manipulate a situation faster than most children her age. Is it fair to lump a whole group of people into a faceless label? I would say no. Now Jenessa has been called mentally retarded, not by a doctor, but by a educated adult who was raised in a time that this was the term used all the time (to be honest I was not offended by the woman's comment just taken aback) Anyway, I then look at my daughter and think, ok, so she is going to hear this term used in this manner, but the majority of the time she is going to hear retard or retarded to describe your dumb drunk friend who decided to run into a wall because they didn't have the common sense to not. So, she is then going to wonder why or she will figure out really fast that she is being insulted because that was the term that the nice lady at the doctors office or the school used to describe her condition. 
Ok, your saying, but I am not using it to hurt her! I would never do that! Good, I am glad that you would never want to hurt my daughter, but using that term is hurtful to her and all of her friends like her because when you use it, other people hear and then they use it and one of them might see her and use it to her face to describe her! So, if you choose to use it that is up to you! I am not the word cops and I don't want to take away your freedom of speech. However, as Tim Shrivers stated, "You are allowed to be humiliating, degrading and hurtful." We as parents and people who love our friends and family member with intellectual disabilities are here to be teachers to help you understand that what you are saying is hurtful! 
So, with that being said... please keep in mind that as a parent of a child with down syndrome, my ears are super sensitive to the r-word and I will probably make a comment or ask you to not use that word out of respect for my daughter. If you want to believe that Josh or myself are being overly sensitive that is your right, but please do not get upset if we don't include you as often in our daughters lives! And if you would the next time you are about to use the r-word in a degrading manner please keep in mind this beautiful face and think, would this hurt her! Thanks!