Saturday, September 29, 2012

Does this Offend You?

*This post was extremely hard for me to write because these words feel like poison in my mind. My point is not  to offend anyone, but to show how offensive and thoughtless words can be. NONE of these words are part of my vocabulary, and my wish is that they are not part of yours as well.

Kike- a derogatory word for a GermanSpic- a derogatory word for someone of Hispanic descent. Jap- a derogatory word for some who is JapaneseNigger- a derogatory word for someone of African American descent. Faggot- a derogatory word for someone who is homosexual. Cunt- a derogatory word for a woman. Chink-a derogatory word for someone who is Chinese. Gook- a derogatory word for someone of Asian descent. Guido- a derogatory word for an Italian-American male. Honky- a derogatory term for a white person. Oreo- a derogatory term for someone who is
black but is perceived to act like a white person ( we are so far from being unprejudiced if we are still even thinking this way!). Paddy- a derogatory term for someone who is of Irish descent. Polack- a derogatory term for someone from Poland. Ginger- a derogatory term for someone with red hair. Towel Head- a derogatory term for someone from the middle east. Wop- a derogatory term for an Italian. Frog- a derogatory term for a French Canadian. Abbie- derogatory term for a Jewish male. Beaner- a derogatory term for someone from Mexico. Brownie- a derogatory term for someone who has a mixed white and black ancestry. Breed- a derogatory term for a Native American. Flip- a derogatory term for Filipinos....

These words, along with many others likewise, cause great pain, offense and shame to those they mean to belittle. Everyone is aware of the power of these words and choose not to (or, heartlessly choose to) use them- directed at a person, object or situation, and aware of the damage they do.

Retard- a derogatory term for someone who is mentally challenged.

But this one, this one, is widely defended to be okay to use- greatly due to ignorance of the word and people being unaware of the power behind it. Whether or not you are talking about a black person, if you refer to something being like a Nigger, its still offensive. And everyone would still consider that a direct jab to the black community. But then refer to something being retarded and many people fight defensively that that in no way directly is offensive those that are mentally challenged, reasoning that it just a word for slow or stupid.

It causes the same pain, offense and shame to those that it belittles. Exactly the same power as all the above words. Negro was once just a word that meant black- try to get away with that reasoning and use it.

Retard, a word, used as a noun, that originally defined someone with a lower intellectual ability, evolved into a slang used to belittle, hurt and devalue those who are mentally challenged. In the noun form, it has always been linked to those who have a lower IQ.

When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.- From Spread the Word to End the Word

There are people adamant about defending their right to use the word.  And much like most people who defend their right to use this word, they completely miss the point. Its not about abolishing a word... its about abolishing an attitude. Its about removing that word from a situation because of the harsh and painful things it implies. Its about respecting other human beings- which using the R word truly dehumanizes those with learning disabilities. I love what this gentleman had to say about that-

But for our part, we are trying to awaken the world to the need for a new civil rights movement -- of the heart. We seek to educate people that a crushing prejudice against people with intellectual disabilities is rampant -- a prejudice that assumes that people with significant learning challenges are stupid or hapless or somehow just not worth much. They're, um, "retarded." And that attitude is not funny or nuanced or satirical. It's horrific.-
Timothy Shriver

I was talking to a friend the other day about how much I was encouraged to abort Fiona. Every day I look at her and am brought to my knees in gratefulness that she is part of my life- that I am her mom and no doctor could talk me into her being any less worthy at a shot at this life then any other baby. I remember being told we had to act wisely in how to remove her as so not to damage my chances of having another good child. That conversation is burned into my mind along with all the pain of actually being told they didn't think my daughter was worth giving life to. Fiona, by definition, is mentally retarded (although most medical books are now starting to also get rid of that phrase because of the derogatory context it has evolved to have). No one who knows her considers her stupid. No one who loves her thinks her unworthy. She isn't. And neither are the numerous others I know with mental handicaps. But when someone is talking about how "that movie was so retarded" or "that boy is acting like a retard" or "omg, I am so retarded!", you are subconsciously lowering respect for those that actually are. You just said a movie was stupid like someone who is mentally challenged. THAT IS WHAT YOU SAID- NO MATTER WHAT YOU SAY YOU MEANT (which FYI, that is subconsciously what you meant). How can I not take direct offense to that? Its a knife in my stomach that I take everyday, from people I know, from people I care about, from people who care about Fiona, let alone the random stranger.

My original idea with this post was to keep it short. Get my point across simply so people would read the whole thing, because I know there are lot of people who don't like to read long posts. I hope you have hung in there till now. I am so sick of asking people, nicely, not to use it and for people getting defensive with their rights of speech. What it boils down to is do you respect other people? Because this offends some. So could you please at least think about that before you throw it around? That's all.

October is National Down syndrome Awareness month in the States. Some wonderful bloggers do a blog each day in October about Down syndrome, or just about their life with their child with Down syndrome, to highlight the truth and the blessings of this road in life. I do not have the time or energy for that this year, so if you want more information please look on my side bar to my list of fellow bloggers and I am sure you will find many amazing posts this month.

This topic is not new, I know. I have written about it many times before. With each one I hope one more person understands it. Because I still have friends who don't. Down syndrome is so not a big deal anymore in my world. Its a piece of our puzzle, but that's all. If you really want to make a difference though, if you want to better Fiona's future.... help by not causing her pain by belittling her worth with the R word. Its simple. Its a free gift. And it by far means the most to us.

Unless someone like you cares a whole awful lot, nothing is going to get better. It's not. - Dr. Seuss

Tuesday, September 25, 2012

How mosaic Down syndrome can be missed

Parents are crazy. Especially moms. And especially new moms. Every sniffle raises alarm, every odd movement or out of routine behavior causes suspicion. So it comes to no surprise to me that doctors have quick answers to all these tiny concerns. I am sure the pediatrician night hot lines ring off the hook all night long from worried moms over-reading into the common cold. But what happens when mothers intuition is right? What happens when the rare, not likely cause of the sniffle is the cause? What happens when doctors dismiss symptoms because they are unaware of what they may be indicating?

For two families, just that happened. Both Holly and Sarah knew certain things were not right with their daughters. Numerous small health concerns kept rising up, and each time, they were dismissed with the most common answers.  For Holly, the answers she was given for the cause her daughters constipation and projectile vomiting did not sit right. And for Sarah when her daughter ended up having a very rare congenital subglottic stenosis, she too questioned if something else could have caused it. But who were they to question doctors? They trusted their opinions. They trusted that they knew best.

Lili, age 3
Holly noticed on her daughter Hannah, now 12, around the age she was 3, these odd rash-looking bruises breaking out on her body. Concerned, Holly kept an eye on them, but they did not seem bad enough to have her checked. However, over the next few months, Hannah kept getting sick. At the doctors, one day, for an ear infection, the doctor noted that Hannah was particularly pale and asked to do blood work on her. From her doctors concern, they were sent to the hospital for more blood work and sure enough her white blood cell count was through the roof, Hannah had leukemia.Ten years later, not too far from where Hannah lives, Sarah noticed the same rash-looking bruises on her 3 year old daughter Lili, and sure enough, Lili was quickly diagnosed also with childhood leukemia.  And both families, after being in treatment for leukemia for a few weeks, were shocked to find out their girls also had Down syndrome- mosaic Down syndrome.

This is more common then you would think, late diagnosis of this form of Down syndrome. Both girls had developed normally or normally enough, and did not have a strong "look" of Down syndrome. The only seemingly thing the extra chromosome affected with these girls at this point was their health. From what we know about mosaic Down syndrome, a person with mDs has two different percentages- a skin percentage and a blood percentage. Research shows those with a high percentage of trisomy 21 cells in their blood compared to their skin are at a much higher risk of being born with a heart defect or possibly have blood related issues such as leukemia.

For both of these girls, they were diagnosed with leukemia after it had taken hold of their bodies. Possibly, if they had known that they had mDs, although that could have in no way prevented leukemia, it would have given them a chance to have caught they had leukemia much sooner, as one of the health guidelines for those with Down syndrome is to be checked for leukemia yearly. Although, even with that testing for those with Down syndrome, it can be missed if leukemia developes in between the yearly testing. None the less, it could be caught sooner since doctors are aware to look for it in those with Down syndrome. They wouldn't write off normal sicknesses as no big deal, as with Hannah frequently getting sick, if she had her Down syndrome diagnosis. The doctor would have been more concerned from the start. We are going in later this week for Fiona's annual blood work that will check her white blood cell count and her thyroid levels.With the likely hood of those with Down syndrome developing leukemia, it is normal protocol to test for it. But without a Down syndrome diagnosis, this blood work isn't part of a regular child's check up.

The biggest issue is that there were signs that pointed to these girls having mDs, but the doctors were not tuned into them, because many doctors look for physical characteristics of Down syndrome and mosaic Down syndrome often does not present many of the typical characteristics. All of those minor health issues   that the girls had, minor delays that were written off as being okay, are associated with chromosome abnormalities.With mDs being as rare as it is, the doctors may have dismissed it as so unlikely to even bother testing for, or even possibly, they didn't even know there was a mosaic form of Down syndrome. From talking with people I am connected to through IMDSA (International Mosaic Down Syndrome Association), many families mention how their doctors didn't know about it, and some even were told that mosaic Down syndrome is not real. Quoted from one parent, her doctor told her "You either have Down syndrome or you don't. It is not possible for only some of the cells to have it". Well, there is a whole community out there that have it, with karotypes to prove it. And for people like Hannah and Lili, having misinformed doctors led not only to a late mosaic Down syndrome diagnosis, but a late leukemia diagnosis.

Hannah, age 12

Thankfully, after a tough battle, Hannah is now 8 years and 8 months in remission. Little Lili, just started her battle this past April and is still fighting. And Sarah is dealing with the shock of both diagnosis's. Going from perfectly normal, to cancer and Down syndrome is quite a lot to take in at once. I remember the swirl of emotions and worries that went my mind when I found out Fiona had a life threatening heart defect and then a few weeks later that she also had Down syndrome. The fear for your child's life and the fear for her future. And a whole lot of paper work and research and new terminology put in front of you. Needless to say, both Lili and Sarah are in my prayers daily.

This is the exact reason why IMDSA exists. To help prevent families from being put in a situation where doctors miss a diagnosis out of lack of information. They currently have put together pamphlets to send to doctors offices, that are just waiting the final approvals. And not that we parents need anything else to worry about, but if your intuition is yelling at you that something just isn't right, listen to it. Fiona's cardiologist gave me that advice at our first visit, and I'll never forget it. He said, as her mom, I know more about her then the doctors, and I need to speak up if something just doesn't seem right to me. When it comes to your child's health, don't be afraid to be crazy- you really are their only advocate.

Our local Buddy Walk is coming up, an event the NDSS does around the country every year to help raise awareness and support for those with Down syndrome. The past two years we have not only walked, but done a modest fundraiser for NDSS. We have so many family and friends who are not local to walk with us, but still love to contribute. This year, in luei of doing the fundraiser for NDSS, as those walking with us will be donating to NDSS, we are asking all of our out of town friends and family that want to be a part to donate to IMDSA. This orginization has really grown in my heart the last few months, and I find what they are doing to be highly important for families like Hannah and Lili's. Or more should I say, so that no more families have to have a late diagnosis like Hannah and Lili. If you would like to make a donation in Fiona's name, click on this link.

IMDSA posted this photo of Lili to help spread awareness about the importance of this diagnosis. Please visit their Facebook page and help share this photo. 

Sunday, September 23, 2012

Fear and Trust

A lot of bad has been happening to people I know. Dying bad, tragic bad, babies without mothers and mothers without babies bad. But as Robert Frost once said, "In three words I can sum up everything I've learned about life. It goes on". It does. Whether or not we are here to experience it physically or even mentally, it keeps going. And I am grateful to have faith that behind everything, there is a purpose. That it doesn't just keep going as if nothing happened, but that because of a greater plan, all life has a purpose. I believe that with all my heart. If I had three words to sum up life, mine would be, He is faithful.

The first year of Fiona's life, along with the 6 months prenatally we knew she had some health problems, were insane. I dreaded to go back and reread blog posts from that time to let it all sink back in just how blessed we are that she is alive and well. Its been over a year since we have been in the hospital for anything, a place that once very much felt like our second home. And she has blossomed into a full blown toddler, cruising the house at speeds that near catch her brothers (okay, honestly there is a good 60 second lag in between when they get somewhere and she does, but those sea legs are definitely more used to land). She is my morning sunshine, my daily dose of joy. My three bless me, and oh how my cup is full.

If I am not careful, the fears creep in. Normal fears, like car accidents, kidnapping, choking. And then there are the extreme, not so common fears. With Fiona, there has always been one thing that sends me into anxiety-stricken panic... leukemia. Most people, I don't think, sit in fear of their child developing childhood cancer, but because of Down syndrome, Fiona is at a greater odd of developing it. So for me, I am constantly reminded of the possibility. I pray and beg, please God, don't lead us down that road. And up pops an odd bruise on Fiona's shoulder.

Its probably nothing, just a reaction to a bug bite. I am sure that's all it is. Yet there is a nagging in the back of my mind wanting to freak out. I have just been surrounded by cancer so much lately and praying that it has not been for the purpose of preparing me for our own journey. I am sure most of you readers, considering a huge chunk of you have kids with Down syndrome, know about Coco. And then there is Lili that you will meet in my next post. And Max here locally. All three are around the age of 3, have Down syndrome and are battling leukemia. And then a 13 year old brother of a friend of my husband has a growing tumor wrapped around his brain, a mother of two young girls going in on Tuesday for brain surgery to remove her benign tumor, and a mother to a seven and a little four year old, that goes to my boys school, who just lost her battle with melanoma. Every where I turn, someone is battling cancer. Almost every person I am close to on a daily basis is dealing with watching a loved one fight it.

Fiona is due for her blood work. I've missed the appointment twice. Subconsciously, I think I am just scared to get the results.

So tomorrow, my alarm is set to call Quest Diagnostic, yet again, and schedule her blood work, yet again. I am trying to take comfort in that God usually doesn't give me my worst fears, He blindsides me with things I never even considered. He's great like that, always letting me know how in control He is. I am sure most of this is all in my head, just my anxiety at its best. But whether or not cancer becomes a part of my life, regardless I still say, He is faithful. Oh, how he is faithful even in the midst of pain.

Tuesday, September 11, 2012

Its called Up syndrome

Writing this took a lot of consideration. I pray I made the right decision.

I had an unexpected surprise. One that I was less prepared for then I thought. I met the 29 year old.

I had planned to get together with her mom and was pleasantly surprised to see the mom wasn't alone when she got to my house. I opened my door to two smiling faces, one whom was younger, slightly shorter with beautiful long brown hair. She stood outside my door with her arms tightly wrapped around a very thick book, a tee-length dress and perfect posture. And as I reached out to shake her hand my excitement was quickly accompanied by fear. I didn't know what to say.

I know how to talk to fellow parents about Down syndrome. I know I to engage with children. But an adult, my age? Older then me actually. Should I talk about Down syndrome? Or Up syndrome, as she insists it be called. She made me feel tense about mentioning it directly because of her adversity towards it. I could hear it in her voice, how she just detest that she has it. Herself, on the other hand, she loves. I have never met someone who was so confident in themselves. No need to tell her that she is beautiful and smart, of that she is sure of. But she also likes to think that others cannot tell she has Up syndrome, as if she relates ugly and dumb to the extra chromosome. And gets very upset when people knows she has it.

I found it incredibly difficult to talk to her in a way she could comprehend well yet not talking down to her. Her manners were impeccable. Her speech, elegant. She spoke slowly and articulated every word with great concentration... there is no doubt in my mind that her mind isn't brilliant beyond her speech. But there was also many times I found myself having to reword things or repeat in a different way so that she understood. The whole time trying to choke back tears pushing to stream for many different reasons.

I felt like I was talking to Fiona in 20 some years. I was hearing the pain Fiona has a head of her from a first hand account and it was clear why this girl had her guard up about Up syndrome.... she knows that people treat her differently because of it. She knows she is excluded from things. She knows people look down on her. She has been hit, pushed, left out, left behind and ignored. And I could tell exactly what she was thinking.... If I am good enough, smart enough, pretty enough, I can fool them. And if I can fool them, then I will be accepted. I wanted to cry because I knew there was nothing I could do for her or for Fiona... the only thing to prevent this pain is for others to do something. And that, readers, is a big dream to think that everyone will all of a sudden understand compassion and inclusion between now and when Fiona enters the school system.

This girl was included, well, at least her family had her included. Normal schools, hung out with typical peers... but she wasn't really included. She re-accounted for me a time when she was at the beach with her younger sister and how people would act like she wasn't even there. How one boy walked with her for a few minutes, but she could tell it was out of pity. She was so nervous, she kept asking him the same question and eventually he got annoyed and left her to walk alone. Inclusion is a big part of what made her dislike Up syndrome. How do you make people like and understand your kid? You can't. That comes from compassionate hearts, understanding and educating... but there just isn't enough of that in the world.

Its important to remember this pain isn't what rules her life. She loves her life, she loves her family, she has big dreams of publishing a book and being on Ellen. She is confident, smart, able to live on her own. Although her mom lives with her in her apartment, she says she prefers this because she likes spending time with her mom. Couldn't control the tears with that one, let a few slip with a prayer that Fiona says the same thing when she is 29. She is able. She is worthy. She is perfect. I am praying she just understands she is perfect even with that extra chromosome she so badly wants to hide.

I hope that she becomes a bigger part of my life. For two reasons... because she is a pleasure to be around and that she can see how I embrace Up syndrome and be more proud of who she is, 47 chromosomes and all. Not that her family doesn't already do this, but I sense not too many people out side of her family let off that Up syndrome is a good thing. It is interesting and difficult at times navigating how to talk with her. That's something, though, I am sure will get easier with each conversation. It gave me a better understanding of how people may have trouble interacting with Fiona as she ages. Its hard to explain to those who don't understand how people with Down syndrome can be so smart while yet have a hard time comprehending. But without a doubt, every person I have met with Down syndrome, smart would be one of the words I use to describe them. You just have to actually engage with them to see it.

Wednesday, September 5, 2012

Short and Sweet

In my three short years of being involved in the Down syndrome community, I have learned these things to be true.

People with Down syndrome can be...


So... basically I have learned a person with Down syndrome is simply, a person.

Tuesday, September 4, 2012

Further down the road and From Grief to Celebration

I loved the feed back I got from my last post. Definitely got me thinking and I loved hearing the different perspectives. One thing I had gravely under thought was that probably the main reason there are less parents of older children with Down syndrome speaking out and posting pictures is that they are respecting their child's wishes and privacy. I don't know how I would feel if my mom started a blog about me, so I totally get that. So if that's the case, I wish there were more bloggers like Sarah. And Cindy and her daughter Beth. And then I came across this little post listing a good handful plus of teen/adult bloggers either parents of a child with Down syndrome or have Down syndrome themselves. Definitely archived all of these!

 For those of you who have told me to write a book, my story so far has already been written by numerous others. They are out there. Good ones. Telling my heart from all the different angles of pre-diagnosis, late diagnosis, birth diagnosis, faith... and most of the books talk about the beginning. The diagnosis. The shock. Because the beginning is hard. The journey to accept what life has given you is hard. And I admire and cherish every book or post that shows the honest war you go through between heartache and unimaginable love, each one serving a different taste of what you may experience to walk in our shoes. Some sappy, some funny, some incredibly insightful. all heart-wrenching at parts. But the ones I have read so far are just stories to me. Beautiful stories. Reenactments of something I have already been through.

I am craving to know what happens next.

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome

From Grief to Celebration- Margaret (Gary) Bender. A book about what happens next. I am so glad I read this gem of a book. Its not fancy, like most I have read. No flashy photography or abundant metaphors. But this 74 page book has more enlightening information in it then I have read yet anywhere. She explains what life is like not only giving birth to a child with Down syndrome, but raising a child with Down syndrome. And she does so in a way that is easy to read, easy to follow and sticks in your mind. I love that she resources books that she read and books that she read to her daughter Alex ( definitely going to get Where's Chimpy to read to Fiona). She hits so many key "what if" questions we have starting out. She touches on all the hard things you have to deal with socially. And gives you wisdom from personal experience on how to handle it.

Life with a child with Down syndrome is as unpredictable as anyone else's. Its not so much about what our children will be able to achieve, only they will tell us that. But there are some unavoidable bumps you hit when it comes to Down syndrome. Most of them being social- how other people treat your child and your family. Gary gives a lot of incite into how they went about these bumps, what they did to soften them or overcome them, both things that worked and things that failed. Good advice only someone who has been there can give.

Like she says in the book one of the most invaluable things is meeting with people face to face... she makes you feel like you did this with her by reading this book. She was able to take things that you are handed in generic pamphlets and huge text books after your baby is born, and compacted it into a short and personable read. This book should be placed in the hands of every parent faced with the diagnosis of Down syndrome of their child. It truly is a gem.

If I ever write a book, I want to wait to be able to give advice and incite like Gary's. My dream, that Fiona would write it with me. I may have completed the first part of coming to a place of acceptance of my rocky road, but there are still a whole lot more hills ahead to conquer. This book is invaluable to me, and I will cherish my personally signed by Alex copy.

I have talked to two people recently who are dealing with having an empty nest. Its funny to me how one of the fears we have about having a child with special needs is them never leaving home... and how when the time comes for children to leave home, these moms said they would give anything for their child to always live with them. Fiona's ITDS said, " Knowing what I feel now, I would have been elated if someone had told me my daughter was going to have to live with me forever". Blessing in disguise.

If anyone knows any self advocates or books or blogs that are out there pertaining to those in high school or older with Down syndrome, leave a comment and let me know.

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