World Down Syndrome Day: Random Act of Kindness and Rock Your Socks!

Tomorrow is World Down Syndrome Day, which is on 3/21 for 3 copies of the 21st chromosome.  A couple ways to help increase awareness and show support is to perform a random act of kindness or wear crazy socks to draw attention in order to strike up a conversation.  In either case, you can tell people that what you are doing is in honor of WDSD and you are showing support to people with Down Syndrome.  If you want to show a picture of our little guy, please feel free!  It’s always nice to connect the act with a sweet face.

So what kind of random acts can you do?  Something that will allow you a chance to talk to someone directly is ideal, so waving in a driver in bad traffic probably wouldn’t be a good one.  But letting someone cut in front of you in line, buying a stranger’s cup of coffee, buying the person’s lunch behind you, bringing in cookies into work or dropping it off at school with a little sign, whatever inspires you throughout the day works too!  I’ve also heard of people paying for parking meters or some other thing and leaving a note on the windshield.  The key is to increase awareness and show support while doing the act of kindness, otherwise it just shows people that you are a good soul (a good practice in general but does not necessarily increase awareness).  It’s kind of a Pay It Forward with a Down Syndrome twist.

Or you can wear outrageous socks (because they look like chromosomes with some imagination) to increase awareness too.  So when someone looks at your odd display, you can strike up a conversation about how you are supporting WDSD and even perhaps share a quick story or two (or picture of your loved one with Down Syndrome). Some people like this, some don’t.  And living in the Midwest, the cold weather can prevent people from noticing socks hidden in long pants and shoes or boots.  So I prefer the random act of kindness myself (and it makes you and another stranger feel good and have a better day, which is always a good thing).

Increasing awareness is something I try to do every day in everyday life.  When I check out somewhere, I try to bring up the topic of our son and then I show them a picture of him on my phone.  Sometimes they aren’t very interested, but I would say more often than not, we have a pleasant conversation.  Or if I’m out with my son, I will bring up the fact that he has Down Syndrome and how great he is doing.  Even people in line will strike up a conversation sometimes, although I tend to bring down the cashier’s productivity momentarily.  But no matter.  If I can help increase awareness, people in a rush can find another line to wait in.

This year’s theme is “my friends, my community.”  Click here to view more.  This theme is all about showing support for inclusion for people with Down Syndrome in the community, which leads to increased abilities, heightened self-confidence and greater independence overall.  We strongly support inclusion for people with Down Syndrome, and we strongly believe that inclusion is critical for global acceptance and for allowing people with Down Syndrome the opportunity to make their dreams come true.  That is why we are sponsoring a charity walk for Lumind, a non-profit that is working on research and clinical trials to help improve cognition and behavioral deficits, as well as Alzheimers, in people with Down Syndrome to bring us one more step closer to realizing true inclusion in the community.  Click here to learn more.

So tomorrow is a specific call for the world to show support to those with Down Syndrome (hence why it’s called WDSD), so no matter where you are in the world, please join us in showing support.  And don’t forget to share your pictures and stories on social media!  #WDSD2016

Lumind: Paving the way for Critical Research to Brighten the Futures of those with Down Syndrome

In honor of World Down Syndrome Day, which is on 3/21 for 3 copies of the 21st chromosome, we are planning a charity walk in our neighborhood on 3/26 to raise money for Lumind, a non-profit that conducts crucial research on Down Syndrome.  There really are so many wonderful non-profits supporting Down syndrome that it is difficult to choose just one worthy of our hard earned dollars, but the research that Lumind is working on really is very exciting. And they need private funding to continue this important research and trials.

So what kind of research do they do?  Lumind currently has a number of clinical trials that they are partnering with the National Institute of Health and some pharmaceuticals that have the opportunity to radically change the futures of those with Down Syndrome including improving cognitive and behavioral deficits, improving memory, and researching Down Syndrome and Alzheimer’s.  (Click here to learn more on their research and trials.)

What could all this possibly mean?  Well, imagine if they could help address behavior, memory and cognitive issues that many with Down Syndrome exhibit. That could possibly mean that children who previously were not good candidates for inclusion in the classroom due to behavioral or cognitive issues (some may have problems with transitions or cannot keep up with an even modified curriculum in class) could now participate in the general education classroom.  Or adults can become more independent and be more gainfully employed.

Think of the resulting domino affect this could have. Being included in the general classroom gives children with Down syndrome better role models to learn from, it can improve self-confidence, and it can lead to more opportunities for inclusion not just in school, but throughout the community.  There can be more high school graduates (not just a certification but be on the diploma track), opportunities for college, more career and job choices, and more acceptance in society and greater independence overall.

This could all positively impact how individuals with Down syndrome are viewed in public and change general perceptions in our society, breaking down huge barriers and negative stereotypes. We would see more true inclusion in the classrooms and in the community. Perhaps it could even lead to the heartbreaking number of terminated pregnancies of those with a prenatal diagnosis of Down syndrome.

We could also possibly help prevent or put off the onset, or lessen the severity of Alzheimer’s in adults with Down syndrome, as they are more likely to develop Alzheimer’s due to proteins linked to Alzheimer’s being on the 21st chromosome.  So those with Down syndrome will develop Alzheimer’s sooner as 1 in 4 who have Down syndrome will develop Alzheimer’s by the age of 40 and half will by the age of 50. These are heartbreaking statistics that Lumind is trying to change.

In many cases, elderly parents are left to take care of their child with Down syndrome with Alzheimer’s or siblings end up taking care of both a parent(s) and a sibling both suffering from Alzheimer’s or dementia, especially as government funded programs and services are being cut. In August 2014, an elderly man in his 80s who had a wife in ailing health and 2 children who were in homes for a severe intellectual disability (click here to read the story). He was concerned that his son was being physically harmed by his housemate, so he felt desperate about who would be taking care of his children when he and his wife would pass, especially as many programs for the disabled in his state (the state we live in) were being cut. Sadly, he decided the best course of action was to take the lives of his wife, his children and himself because he didn’t trust them in the hands of the state when they died.  His action speaks volumes of how the disabled are treated and prioritized in our state, as this horrible act of murder was executed in the name of love.  I would hate for anyone to think of being in such a position, so the more we can do to prevent situations like these by decreasing the cases and severity of Alzheimer’s and dementia (as well as fund programs and services for the disabled), the better off we will be.

As a parent of a child with Down syndrome, I am grateful for the work that Lumind is doing. I am really hoping that our son will benefit, as I too also worry about his welfare when we grow old due to lack of family supports especially on my side. I too am worried about programs in our state being cut and the lack of support for the disabled. And what that would mean for our son should we pass on before him. If Lumind could help prevent, put off or lessen the severity of Alzheimer’s, then that would alleviate some of this concern.

I also hope and dream for Luke to be included in the general ed classroom as well as in the community. I dream for him to graduate high school with a diploma, attend college, find the love of his life and get married. And I pray that he will have a healthy and happy long life that doesn’t include suffering from Alzheimer’s or dementia, especially at such a young age.

If you too have these dreams for your child or loved one or believe in what Lumind is doing or just want to support people with Down syndrome, then please consider donating to their cause. And for any donation made 3/19-3/21, a generous supporter is matching every dollar with $2, so every donation is tripled.  Click here if you would like to donate.

Guest Room: Parenthood with a Down Syndrome twist

My previous post has me thinking about what it means to be a parent, who becomes parents (biologically, almost everyone) and how having Down Syndrome brings unique complications to all of that.  As a parent of a child with Down Syndrome, I want my child to be independent and to follow his dreams.  What if that leads to the path of parenthood?  Now you may say that isn’t possible, but it has happened, so you never know what the future may bring.  Just as what is seen in this short film in “Guest Room,” it is a very real possibility many of us may find ourselves in this situation (in some form or another) sometime in the future.  (Click here to see the clip.)

Lauren Potter does an excellent job expressing the distress of someone just learning she is pregnant, of someone that is not trying to have a baby and who isn’t married.  But it isn’t just the fact that both parents have Down Syndrome, there is also the additional complexity of the fact that their child has a 50% chance of having Down Syndrome.  There is so much to consider in the mere 13 minutes of film because it raises so many questions in addition to the usual surprise of an unplanned pregnancy between two unmarried people: making us think about the possibility that people with Down Syndrome can conceive a child, the question of who is going to raise the child if they decide to keep it, how will they be able to raise the child on their own if they want to do it themselves as well as what kind of support is needed in that case, to what happens if the child also has Down Syndrome?  And I’m sure there will be people out there questioning if a couple who both have Down Syndrome should even be allowed to keep their child, and more who would take an active role to take that child away from them if someone else wasn’t actively involved in the role of raising that child (although legally I’m not sure what is permissible or not, but I can imagine it being a controversial topic).

But the truth is, all of this is very much possible, especially as we encourage our children towards inclusion and independence.  Because if we teach our children with Down Syndrome that they can be independent and are capable, if we provide opportunities for inclusion and expect them to be treated just like everyone else, then won’t that lead to marriage and the possibility that they too can also want a child or be in a position where they find that they are pregnant?  If we teach them to fly, then is it fair to clip their wings when we want to and is convenient to us?

Now I’m not advocating that we just encourage all people with Down Syndrome to raise their own children, that isn’t my message at all.  All I’m saying is that by teaching them they belong in an environment of inclusion, that they can be like everyone else and go to college and get married, does that not mean they can also be a parent?  Like Megan’s mom had to deal with on Born this Way, we too may find ourselves having that difficult conversation.  For myself personally, I find it difficult to be consistent with that message of inclusion and independence without having to also support what that means when it comes to the huge responsibility of parenthood.  I mean how do you tell them that not only are you worried about who will take care of their child, but that you are concerned that their child could also have Down Syndrome?  What kind of message would that be?  That someone like them (meaning having Down Syndrome) is not something wanted in this world?  For me, I don’t think I want to send that message to my child, as complicated as the consequences may be.  And I personally don’t believe it either, although you may not agree.

But it is a huge responsibility – there is no doubt of that.  But I also think many people don’t consider that when they find themselves in the position of being a parent, especially for the first time.  A first time parent is an eye opening experience, and it is hard to be fully prepared for parenthood without experiencing it firsthand.  And the situation leading up to that fateful moment is not always ideal.  Because how many pregnancies are a result of a lapse in judgment?  And just like anyone else, a person with Down Syndrome may have that lapse in judgment and result in a situation just like we see in “Guest Room.”

I recently watched a documentary about heroine addicts who find themselves parents, and how their addiction conflicted with their parental instincts of wanting to take care of their child.  Sometimes it worked out; other times, it didn’t work out well, and the child ended up being raised by a grandparent(s) or supported by them.  These stories were sad (and heroine addiction is a very serious problem in our country), but it was obvious that the heroine addicts were not prepared to become parents, and many were not able to fulfill that responsibility of raising their child.  I didn’t see anyone chastise the addicts for being so irresponsible of bringing a child into the world under such harsh circumstances (babies are born addicted to opiates when the mother is exposed to heroine during pregnancy) and not being able to raise their child without help.

Now, I know this is not the same because these addicts have a chance to turn things around, get their life together and be able to raise their child successfully.  But that is not guaranteed, and honestly, nothing in life is ever guaranteed.  If we had to ensure that a person had to be fully qualified to be a parent, then many of us wouldn’t be here.  I’m pretty sure I wouldn’t be.  And then there is the difficult question of: what are the qualifications of being a good parent?  Is it love, affection, financial and emotional security, being a good teacher, patience, understanding, all of the above and more?  There is no such thing as a perfect parent, and many become parents without meeting this entire list (some may not meet any of them).  So what right do we have to deny a person from being able to have a child of their own?  Yes, I know it isn’t that simple and it wouldn’t be easy, but when is life ever simple and easy?

And what about the question about having a child that has a 50% chance of having Down Syndrome?  Well, look at your own child and ask yourself if you would do it again, and if your child deserves a chance at life.  It’s easier to do that in retrospect because you know how your child turned out and how much you love your child.  But what about the unknowns?  The fact is though, when it comes to having a child, there aren’t that many “knowns” to begin with.  That is the beauty and complexity of raising a human being – they aren’t programmed to be a certain way that you dictate – having a child is all about embracing the unknowns the best you can and trying to make the best decisions for your child with what you do know.  Then having to trust them when they are adults to make their own decisions.  And to be honest, if having to deal with this problem is the biggest challenge I will ever face as a parent, then I would consider myself fairly lucky.

We can also talk parallels about teenage pregnancies and similar considerations, especially if we (as their parents) feel it best if we raise their child for them or if we feel we must take a very active role.  In that case, do we have more of a say in what happens?  Well, if we expect our children with Down Syndrome to grow up to be responsible adults with Down Syndrome than we would have to do what any parent would do in similar situations: hope we raised them well enough to make good decisions and be responsible enough to know how to follow through on those decisions.  Because at the end of the day, we have to trust them and love them enough to support them no matter what their decision is and the resulting consequences.

Maternal instinct: nature or nurture?

The other day, one of Luke’s therapists told me about a story about a couple who gave up their child with Down syndrome after he/she was born. I think she expected me to be shocked, but I wasn’t. I believe that some people are not meant to be parents (and all children deserved to be loved), and some women act like they lack the maternal instinct. One of those women is my own mother. 

My own mother is one of those people who doesn’t know how to care about anything that doesn’t affect her directly, in a very self-absorbed way, at least with me. It has taken me decades to get over my parent’s neglect and abuse (physical and emotional), and I know I am still not over it. Perhaps it may be due to the fact that my parents left me as a baby in Korea to start a new life here in the states, so I was left behind to be raised by my grandmother and aunts. But my two siblings were born and raised here by my parents. 

Regardless, she still acts like a stranger at times. She didn’t acknowledge Luke’s second birthday and can be very stingy and greedy in how she thinks. I know I should feel sorry for her, but I don’t. When I told her I was upset about her not acknowledging Luke, she just focused on my sister and still hasn’t acknowledged forgetting about his birthday. You see, my sister moved here a month ago on a whim after visiting us for a week. Being the older sister, I felt an obligation to get her set up with finding a place for her and setting her up with furniture and household items we didn’t need or weren’t using much. It was stressful at an already stressful time, but that is how I operate under stress, through actions like staying up until 2am looking for places for her and getting her settled in with things she will need.  I don’t know how not to get involved, although my husband thought that would be the best course of action- to just let my sister figure everything out on her own. But I just don’t know how to sit on the sidelines, although I know this something I’m going to have to work on for my children’s sake.  But my parents are the complete opposite, which isn’t healthy either. 

My parents have always put my siblings and their business ahead of my own welfare.  When I was suspected of type 1 diabetes (my mom used to be a nurse and she was even the one to bring it to the doctor), they didn’t want to pull me out of school so I only was hospitalized after I lost consciousness at school. (As a sidenote, there is a TrialNet study that will monitor children or siblings of people with type 1 diabetes for antibodies that cause type 1 diabetes, and fortunately both my children have tested negative so far.).  I would go on insulin boycotts just crying out for attention but nothing I could do back then or even now can get her attention or to care. I didn’t really take care of my diabetes until years after college when I showed early signs of kidney disease, compounded worse through stress at work. Many times even today I struggle making my health a priority. 

The abuse and neglect was bad enough that my best friend’s parents wanted to adopt me.  Several times, my mother’s neglect and direct actions put my safety in jeopardy with consequences that most parents hope never happen to their child. In the end, she just really didn’t care what happened to me, whether it was emotionally, physically or with my health. In retrospect, I can’t say that my living conditions were unbearably horrible as I’ve heard of other horror stories of what people have endured unfortunately as innocent children.  But I always just knew that my parents, especially my mom, just didn’t really care about my well being.  

So it pains me to say that she and her callous actions still hurt me. Her blatant disregard for my feelings, my health and our children makes me wonder why she had me in the first place. Even when I was pregnant 2 miscarriages before Luke, she didn’t acknowledge the news at all. No words of congrats, of concerns, nothing. She didn’t say anything except for “Really?”, and then she just went back to wanting me to help her with a lawsuit when she refused to pay her lawyers when a business deal went bad and didn’t go her way. When I lost the baby and told her I had Hashimoto’s, she just told me I can take thyroid medicine and nothing more.  We didn’t tell her about the second pregnancy and miscarriage. My parents didn’t even know about Luke’s birth until after he was born. We did this for a number of reasons, but we didn’t want to jeopardize the pregnancy ultimately, and dealing with my mother always makes my sugars rocket sky high. To me, keeping my baby healthy was a huge priority, and I am so very grateful that both my children are relatively happy and healthy. That means the world to me. 

Because to me, a mother is a person who takes an active role of raising her child. By doing so, that is what solidifies the maternal bond and instinct. She cares about the welfare of her children, sometimes even more so than her own welfare. Some people exhibit the maternal instinct naturally even before having children, some people don’t. Some people who don’t think they have it and are scared of it, end up surprising themselves after having kids. I was one of those people. I was afraid of having children for so many reasons. I was afraid of being a bad mother (still am) and messing them up like my parents did to me. So anyone who has had any similar experiences like mine may feel inadequate for parenthood. 

So that is why I can’t judge that couple for giving away their child with Down syndrome or countless others who are scared to death of raising a child with special needs – they too may feel inadequate. But they will miss knowing the joy of having that child in their lives, and may also suffer from distress and depression of giving up that child. That is one major reason why I couldn’t do it- there was the love, the bonding I had already gone through with all the ultrasounds I did of course- but it was the thought of having to live with the alternative which I couldn’t even consider or bear to think of- and that was the knowledge that I gave up on my child. 

So even if you find yourself in this place, take comfort in knowing that countless others have been there and many have lived on to celebrate their children with Down syndrome. Even for someone like me, who has had her share of emotional baggage, can tell you that you do have the strength to do it, that you will overcome any obstacle once you acknowledge the love you have for your child. Trust your parental instinct, it’s in there somewhere, that despite what the doctors may tell you, the future can be bright.  

So yes, I do think that the instinct is innate if we cultivate it by embracing parenthood, as it is the only way we can successfully propagate our species, right?  Even though some choose not to walk that path or embrace that instinct, which is their own right with their own reasons, I do think we all have the ability to be great parents if we just open our hearts up to our children and let them in. 

Thinking of inclusion in all aspects of life

Today is Election Day for primaries in my state, and although we don’t consider ourselves actively political, having a child with special needs alters your perspective on politics, public policies, education, well pretty much everything.  And given that our son is only 2, then the people who run our governments have a lot of say when it comes to his therapies (through early intervention and the school system), his education, and his future. And like any parent out there, we love our children more than life itself, and so we want the very best for them: the best access to services, fair and equal treatment, the best education, supports toward independence (and the programs that support it), and acceptance in society as the cherry on top.  But the waters get muddy if you add in party allegiances influenced by loved ones and core beliefs, perspectives on who is best for job creation and the economy, the environment, foreign policy, etc. So yes, politics is a complicated (and sometimes ugly and messy) matter. 

Now I’ve learned my lesson about discussing politics openly (although we all should feel safe to do so). I once posted an unfavorable article and post about our governor about his lack of support of social services, and one mother who also has a child with Down syndrome commented that I should stay off of Facebook. So not a nice reaction. I did try to preface the post by saying I wasn’t trying to be political and was mainly upset about how they were trying to modify early intervention (which is near and dear to our hearts), but given how sensitive the topic tends to be, it quickly got heated.  

So I am going to TRY and NOT make this post about politics itself, but more about trying to make the best decisions that represent the best interests of you and your family, as well as treating others how you would want yourself and your child with special needs (or friend’s child, grandchild, or anyone really) to be treated. Because that is where I find the issues difficult. I want to be consistent with my attitudes, whether philosophical, political or otherwise.  So I try and ask myself, how would I want others to treat my son with special needs?  With acceptance, of course, and I want him to be included so it doesn’t have to be an active thought or action, with no need even for acknowledgement at all.  
Which is what I see when Luke is in his preschool class with other 1-2 year olds, I just see kids playing and learning. I am so very glad that we signed him up for this class. The teacher is wonderful, the kids are great, and the parents/caregivers are so supportive and caring by just treating Luke and myself as part of the class with no distinction.  I just hope all our experiences will be this great and inclusive, because that will make me so happy!  Because besides the initial explanation of Luke having Down Syndrome, he is just generally accepted as a child in the class.  We’ve also had them over to our home a number of times for play dates and for his second birthday, and Luke loves every moment!  

So as I reflect on what I idealize our world to look like, I think of his preschool class and hope for something like that. Oversimplified I know, but wouldn’t it be nice to live in a world where you don’t harp on differences and just happily play along with everyone else with little worry about the economy, public safety and the environment. But the reality is so far different than idealism. 
Even then though, I try to think about my views as shaping a culture of inclusion, even though I also want my family to grow up in a place that is safe and secure. So I keep hoping and praying that those desires don’t have to be mutually exclusive. Because I worry if the world becomes more cynical and suspicious, what kind of lessons will that teach our children?  That a person who dresses differently or talks differently is meant to be excluded and shunned, yet a child with Down syndrome should be accepted and included?  See where the moral dilemma comes in?  When we try and teach our children that we should include others regardless of ability (or disability), doesn’t it mean the same for difference in religion or race?  But I know it’s hard to practice what you preach consistently across all aspects, especially if those ideals conflict with fears of uncertainty and risk or are muddied up by other issues. It may sound too idealistic but one can still dream, can’t they?   So whoever ends up in the White House, I just hope and pray that you can bring our country together, make it a safe place to raise our kids, and cultivate a society of inclusion, regardless of race, religion or ability.  And a healthy economy and environment too. That’s not too much to ask for, is it?

The Universal Appeal of Born this Way Goes Beyond Superficial Entertainment

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DON’T LIMIT ME!  LUKE IS… WHOEVER HE WANTS TO BE!

I do NOT like reality shows. They seem insincere, tacky and contrived to me. I have (and had) enough drama in my life to last more than one lifetime, so I feel no need to seek out contrived drama in my entertainment. Insincerity in entertainment, as well as insincere people, turn me off, so that is why I can’t stomach most reality shows.

Born This Way is different (click here for the link to the show) – it is a reality show that follows 7 adults with Down syndrome to educate society about Down syndrome in ways that I hope shatter any stereotypes of people who have Down syndrome. The show is meant to inspire parents of children with Down syndrome and to open their eyes to what people with Down syndrome are capable of because some parents may fear that their child may not have the opportunity to live a “normal” life, one in which they go to college, get married, have children and live out their dreams.  And it is a show which gives people with Down Syndrome a chance to share their viewpoints, to have their own voice.

Even if I didn’t have a child with Down syndrome, I would still really enjoy this show because it does open your eyes and educate you on the world of disability, even if it’s just a glimpse. And the raw emotion and sincerity of the people in this group is both heartwarming and heart wrenching. As a parent, it is easy to relate to the parents on this show, even if you didn’t have a child with a disability, you can relate to their struggles, fears and pain. And for those who don’t have children, they can relate to dreams that want to be pursued, even some dreams that parents want to caution pursuing. For all these reasons and more, I see this show having a universal appeal.

There have been critics of the show that I want to address. One has to do with not having “lower functioning” cast members and the fear that everyone will assume people with Down syndrome will all be like those on the show. Honestly, I think these people are missing the point of the show completely. This show isn’t meant to represent the entire community of people with Down syndrome. That would be impossible to do with 7 people, and I’m sure casting for this show did not have full accurate representation as a priority. But that isn’t the point of the show at all. It is meant to shatter stereotypes (especially negative ones) about Down syndrome. And I think it unnecessary to cast it to represent a whole community of people with Down syndrome as that is not the point of the show. To be frank, society may think that everyone with Down syndrome (especially those who have limited to no exposure) are low functioning so casting to include that segment may help solidify negative stereotypes rather than obliterate them.  And this is still a reality show- not a documentary showing every range of capability within the Down syndrome community, which would be impossible to do well and still get to know the cast of the show.

Think about back in the 40-50s when most women were housewives. If you weren’t, there was something “wrong” with you and you were labeled as an “old maid” or something. And if someone met a woman, they would assume that she was a housewife whose sole responsibility was to clean the house, cook dinner and take care of the kids, which there is NOTHING wrong with by the way by today’s standards (and I have done both career track and stay at home and both have their pros and cons but I find staying at home with the kids more fulfilling personally)! But it is wrong to just assume that’s all you could do just because you are a woman.

It’s kind of like that with Down syndrome. Just because you meet someone with Down syndrome, you can’t assume that they aren’t educated, can’t read, aren’t interested in sports, don’t have girlfriends or spouses, don’t have jobs or their own businesses or don’t have a college degree, can’t drive, whatever!  They are a unique individual and being so, there really is not much that you CAN assume about them. Sure, most individuals with Down syndrome will have challenges (some more so than others) but what human being does not?  But before we had Luke, I wasn’t sure what it meant to have Down syndrome. My only references were from Life goes On and Glee.  But I wasn’t sure if those actors were more in the minority or not.

But what the show has taught me is that people with Down syndrome have their strengths, weaknesses, ups and downs, complexity of emotion, dreams, challenges with their parents- pretty much similar to many of us out there- that they are human just like the rest of us.  That I can relate to both the cast and the cast members on the show.

Which brings me to the second criticism, about Elena. I have heard that she turns people off and I get that. I have heard that some people think her emotional issues are because she has Down syndrome, but I believe it’s because she wasn’t accepted (and in my viewpoint, didn’t feel truly loved) by her parents and society (especially in Japan). I believe it’s this pain of rejection that has caused her emotional issues, not because having an extra chromosome somehow makes her emotional unstable. I say this because I have felt unloved at times by my parents (and still struggle with this).  I can understand how judgmental and harsh a culture can be on their own kind (at least from my own personal experiences). Now, I can’t or shouldn’t generalize, but my own personal experience is that some people within Asian cultures aren’t very accepting of their own kind who do not meet expected social norms – be it a disability, can’t speak the language, doesn’t act the way they are expected to, etc.  Other cultures may also be like this, but my own experiences growing up as a child, and even sometimes as an adult, have not been very positive in general (although I have some good experiences as well).  I can only hope that these cultures learn to be more accepting and change their perspectives on disabilities especially.

Personally, I don’t judge someone based on the country they are from (although I am still afraid of old school Koreans because I can’t speak the language) but instead focus on whether the person I meet has a good heart, independent of the color of their skin, their religion or otherwise. But for many years, I struggled with self-loathing and self-esteem issues, and I had a hard time relating to others because I too felt like I often didn’t fit in.  So growing up, I felt completely out of place with most traditional Koreans.  So I can relate to Elena because she can’t relate to Down syndrome and it is obviously a big part of who she is.

Also, for Elena to have a mother who wouldn’t accept you for 20 years is very painful. Even if she told you she loved you, there is probably a part of you that didn’t believe her because she didn’t love ALL of you. And that’s why I think if you truly love someone, you have to love them for who they are completely. Otherwise, you feel that the love is conditional. And how many of us out there grew up with parents who weren’t supportive?  And in result, had a low self-esteem?  That is difficult to cope with, and you can see how painful it is for Elena to deal with after having been rejected for two decades.  Elena, as well as other examples, are a good lesson to learn on the repercussions of not accepting your child and teaching them to love themselves and cope with their challenges.  As a parent of a child with special needs, it is a good lesson to incorporate in how you see and love your child (really should be a good lesson for any parent).  I think how Elena grows in the show is a strong testament to her emotional maturity, and honestly, I’m not sure if I have fared as well in my own experiences.

So don’t judge Elena for being so emotional and insecure. Try to imagine what it would be like to have a parent who didn’t accept you for who you were, and then try to understand what she is going through. Because not being accepted because you have Down syndrome is as basic as not being accepted for being a female or for being a certain race – these are characteristics one cannot change. That is a whole lot of pain (and emotion) to deal with and can often lead to someone shutting down, feeling overwhelmed or being ultra-sensitive because any feeling of rejection (no matter how slight) can bring the whole pain of being rejected by those who are supposed to love you the most. For these reasons, I can relate to Elena and hope that one day she can find peace in her heart and feel acceptance in society (which we are far away from still unfortunately).

I can also relate to Kris, Megan’s mom. I so want my children to be independent and happy. But I want to protect them from everything too- every mean spirited child who calls them a bad name, every person who has treated them unfairly, every misunderstanding that has caused them pain and any person who tries to take advantage of them. Feeling this way takes a lot of emotional energy and I know things will be much worse for Luke than they were with our older son. And this is why I feel connected to Kris because I too feel very attached to my own kids and worry what will happen to them should something happen to us because I do not know who will take care of them and love them as much as we do (a common fear for many I’m sure).

And how about Rachel?  And her bravery to overcome her fears, ones she has lived with for 3 decades?  Or how insightful and eloquent Steve is?  And how loving Cristina is?  Or Sean’s confidence in pursuing his search for a girlfriend and his path to independence?  And how entertaining and talented John is? And Megan’s ability to inspire others like Elena to love themselves?  Megan’s confidence and her desires to pursue all her dreams are so real, but it’s her sweet vulnerability that makes us love her that much more.  For all these reasons and more, I wait with bated breath for Season Two and have high expectations for another well done series.

And can you imagine what the future holds for our children with Down Syndrome?  Because when Cristina has that heart-to-heart talk with her mom, it just brings you to tears because it must have been so hard to bring a child with Down Syndrome into the world back then.  Back then, the prognosis was always negative and bleak, and positive stories were almost non-existent.  I feel like we have come a long way since then, and that is mainly due to the hard work of these parents who have fought so hard to give everything to their children.  We have so much to thank them for, yet there is so much more work to be done.  So I hugely admire the parents of the cast of the show… For loving their children no matter what and giving them the love and support they need to become wonderful human beings and to show the rest of the world just what they are capable of doing.

31 for 21: why is October Down syndrome awareness month?

So this question entered my mind as I was talking about how busy the month of October is to my husband, whose birthday is in October as well as another couple family members. But October seems to be dominated by breast cancer, and while I love that we have a month commited to celebrate Down syndrome, I always wondered why. It seems like March was more fitting, with world Down syndrome day being 3/21 for 3 copies of the 21st chromosome, as well as the start of spring, one of my favorite seasons, especially after a harsh Chicago winter. 

So I googled it and came across this article (click to view), and was surprised to see that president Reagan proclaimed it to be back in 1984. What was even more surprising (and distressing) was his message, “This new age of enlightened understanding recognizes that developmentally disabled persons have a great potential for achieving and overcoming handicaps…Research has uncovered the genetic basis for the condition and points the way to its ultimate prevention.”  Points the way to its ultimate prevention?  You see, maybe I am naive and ignorant, but it still shocks me to find out that so many choose to abort their unborn babies who have been diagnosed with Down syndrome. 

For those who have read our story, you know where we are coming from and why we personally wouldn’t consider aborting our baby for being diagnosed with Down syndrome. I am also pretty sure I couldn’t abort my baby for any medical reason, no matter what the doctors say. Not necessarily for religious reasons, but I could never forgive myself for taking such a decision into my own hands. Because what if the doctors are wrong?  Just too many “what if’s” that I just wouldn’t be strong enough to go through with it unless it happened naturally. 

So if we had Luke decades ago, I probably would have faced some strong controversy with this view.  I wonder if society would change its viewpoint on people with disabilities if we grew up in a society where they were treated as equals instead of being treated differently and tucked away in institutions.  Would we become a society that didn’t have such a high percent of pregnancies with a Down syndrome diagnosis being aborted?  I have read that other countries who have more positive perceptions of people with disabilities also have lower rates of abortion for pregnancies with Down syndrome diagnoses. 

Can that happen here in the United States?  I certainly hope so. And like the writer whom I reference above, I too believe we have yet to see the true potential of people who happen to have Down syndrome. And I’m hoping with more awareness and acceptance, I’m hoping that one day we will see a greatly reduced percent of abortions of pregnancies with a Down syndrome diagnosis. Not because of any kind of legislation (besides sharing accurate and up to date information and contact info for support groups at prenatal diagnoses, which I think should be a given), but because people truly want their babies with Down syndrome because it won’t be seen as such a negative diagnosis anymore. 

31 for 21: The difficulty of finding a good school for a “special needs” child

I met a mom this week who has a child with a severe vision impairment. I wasn’t sure if I should say “I’m sorry” as I don’t like it when people say that to me when I tell people that Luke has Down syndrome, but was I supposed to in this case?  I decided not to and we just talked about how different experiences can be in a school district when you have a child with “special needs” (yes, I haven’t come up with a better “label” but if you have one, please share!). 

The term “disability” can cover so many ranges of abilities and skills that one cannot just say a school district is great with special needs because individual circumstances vary so much.  When we started looking for a bigger house, I researched local school districts because it was important to me that we (and Luke) would feel welcome and that the school district would be willing to consider parental input as well as what is best for the child.  When we first looked for houses a year after we got married, we focused on top ranked schools and our old school district is ranked in the top 10 in the county.  But now that we have kids, we have found that good test scores and high rankings do not necessarily make a good school. Good test scores gets the school more money, perhaps, but if you have children who are outliers and the school is rigid, it may not be a good fit. 

I was a little skeptical when calling our old school district about Luke because they were a bit arrogant on their approach when I visited them to discuss our older son and gifted education, to which their response was our model works for most kids and if it doesn’t work for your child, best to take them somewhere else (which is what we did).  But our options are more limited for Luke because of the additional services needed, but I was stil hopeful thinking that maybe they put more focus on children who don’t score as well.  Our old school district is more test scores focused so they said placement in a general Ed classroom would be “assessment” based. I asked what that meant but they were very vague. I asked if there could be exceptions made but they kind of gave me the run around, and they just said that the decision of whether a child will be placed in or out of the self-contained classroom is based on tests done every year. I think she thought her answer would make me feel better, but it didn’t. To me, it felt even more disruptive. So if your child did well one year and was placed in the general Ed classroom, but for whatever reason, didn’t do well the following year, he or she would then be placed in self-contained. This didn’t feel right to me and would be confusing to a child and potentially devastating to their self-confidence. 

I was also told that the school had separated from SEDOL and that due to limited resources, the self contained classrooms would be shared among three local districts. So although this may be a step up from being bused to a completely self-contained school miles away, it still would mean having to get used to a completely different set of typical students for elementary, middle and junior high schools. This also seemed disruptive.  

But this mother I had spoken to this week had a good experience with our old district, which may be very well the case.  Although her child has severely limited vision, it doesn’t mean he cannot keep up with the other children academically. Now this is the rub. I think many school districts think it is very difficult for a child with Down syndrome to keep up with the general Ed classroom academically, which I’m sure is definitely more work in almost every case. But the ones who won’t even try, are the ones to avoid in my book.  So my gut was telling me to look elsewhere. 
And you can’t easily identify those school districts because that philosophy doesn’t come across in high test scores and rankings or even in special needs education profiles (where it tells you what % of time is spent in general Ed classrooms) because those profiles do not break down the kind of disability (which includes any child with an IEP for anything like ADHD, dsylexia, hearing impaired, Down Syndrome). So your search can’t be based on what most parents would judge a school by. So a school that looks great “on paper,” may be a very poor fit for your child with Down syndrome (or gifted or anyone that doesn’t fall within the normal bell curve). 

You also have to be careful when talking to other parents who have children with special needs. It is easier to fully include children with a learning disability like dsylexia or a hearing or vision impairment because there are tools to assist with the curriculum, but there is usually no adjustment to the curriculum itself. But with a child who has a cognitive impairment/delay or is intellectually disabled, the waters become muddy as the curriculum usually has to be modified to that child’s capabilities, which requires more work. 

When I first started my search, several families urged me to consider the Deerfield school district.  When I first called and talked to the woman in charge of student services (or whatever the title is called who is in charge of IEPs), I was hopeful. They said their preferred placement was in the home school and tried to support the child in their local environment. However, when I kept digging, I found out that if the curriculum had to be modified in any way, the child would have to move to a self-contained classroom. So they would under no circumstances (at least I was told) modify the general Ed curriculum. I was floored. So Luke would probably be fully included for elementary likely with some pull out services for math and reading I’m guessing (that they provide in each home school), but that at some point, he would have to move to a self-contained classroom as I am guessing he probably wouldn’t be able to do the exact same homework assignments as his peers. So a district that was highly acclaimed by several families would not be a good fit for us. 

You also have to specific about feedback from families who have children with Down syndrome. Not everyone believes in full inclusion for their child, and not every child is a good candidate for it, but someone who isn’t interested in inclusion may also speak highly of a district that doesn’t truly support inclusion. So a generic stamp of approval, even from a parent with a child with Down syndrome, may still not mean that same school district will be a good fit for you and your child. 

So what to do?  You have to sit down and and think hard what you are looking for from a school district. No one is going to guarantee that your child will be fully included for their entire education in their district. They don’t know your child and their needs may change as they grow. So for us, we wanted a district that would be willing to listen to us and work with us to determine a plan that would be best for our child and help us execute that plan. We also wanted to be in a district that would be open to the concept of inclusion, even if we later determined that Luke wouldn’t be a good candidate, we still wanted to be in an area that supported the concept philosophically. 

So with that thought in mind, I set out to call 8 different school districts including our old one. A few never called me back, which I took to be a bad sign. I was surprised and disappointed that there weren’t more districts that were more supportive of inclusion. I wonder if the cuts in funding combined with the over emphasis on standardized testing (among other things) is what has caused this trend. In our old district, they have adopted an individualized model and end up clustering like-minded together to more efficiently and cost effectively teach to each child so groups of children could move at a pace similar to their peers. Unfortunately, this also means that “like-minded” ends up resulting in self-contained classrooms for children with a learning disability. I was under the impression that this customized model is well suited for gifted children, but I was surprised that there are districts who do both gifted and inclusion well (such as our current district from what I hear and hope to be true and I didn’t even know they also cater to gifted education well until after we moved). So the two do not have to be mutually exclusive.  In fact, I have heard that classrooms where children are fully included have less bullying, more sensitivity and an increased understanding of the material as explaining it to someone else helps reinforce their lessons as well as build leadership skills and increase self-confidence. 

In the end, we narrowed it down to 3. The one where we ended up had the best combination of location, house and neighborhood feel. We feel that this is the place for us, and I felt very welcome when I visited the local school in person with Luke in tow. It took a lot of work and I’m hoping that we made the right choice, but my gut tells me that we have. 

Now what to do if you can’t move because you have other children to consider or other reasons? I will still recommend doing your research both on your current district and other local ones. Try to find out what other local schools are doing well so that you know what you are aiming for or want. If your district is just inexperienced but willing to work with you, this can be a huge plus. Just try to work collaboratively and be reasonable and realistic as most districts are resource constrained. Try to be accommodating as well and help and get involved with the school, especially if you already have children in the district. I believe that having a good solid working relationship as a foundation will go a long way to having a collaborative relationship for giving your child with Down syndrome the best education he or she can get. 

And if your district isn’t so supportive?  Reach out to other families and see if it would be helpful to group together and have more influence with numbers on your side. You may also want to look into hiring or obtaining an advocate or lawyer. Legally, your child has a right to be educated in the Least Restrictive Environment (LRE) and you have rights through IDEA (Wright’s Law is a great source if you have to take this route). 

Talk to others online (there are many online support groups on Facebook) and seek out their advice. There is a wealth of knowledge out there and many people willing to help. No matter what your journey and how tough it is, know that the destination is worthwhile and the rewards will be worth it. 

31 for 21: What does it mean to be “Smart?”

So it is very unlikely that Luke will be an astronaut when he grows up, but exactly what are the chances any of our typically developing kids will be?  But what about our other dreams, our other hopes of things that may never be?  But how often do children, typical or not, do as their parents wish?  Not often. My parents wanted me to be a lawyer or doctor or marry one, neither of their wishes came true. But whatever those hopes and dreams may be, I think the most common one (and one that we share) is the hope that our children will grow up to be happy, healthy and well adjusted so they can be a positive contribution to society.  There are many people with Down syndrome who grow up to get jobs, live independently, go to college, get married, and some have children and become parents.  That may not happen for every person, however, I think people tend to put limitations or judge those with Down syndrome a little unfairly. And many may not realize how full and rich their lives are. 

Some people may not know that many people with Down syndrome have high social and adaptive skills, leading to what some call the Down syndrome advantage  (click here to read more).  So they are not just a positive contribution to society, but by virtue of who they are and their attitudes and graciousness, end up lifting up the people around them.  And I have heard other people say with the best intentions that if you are to have a child with a disability, then you are fortunate it is Down syndrome. Again, this statement may come across as offensive to some, but I think what they are trying to convey is this “advantage” and the positive effects having a child or sibling has on the family. That because a person with Down syndrome is more likely to have higher social and adaptive skills than what their IQ may imply, it will have a more positive impact on your life. For us, this is definitely true. 

So even though a standard IQ test may only range typically between 40-70 for someone with Down syndrome, there are so many factors that these tests do not capture. One, is what I like to call emotional IQ, and that is the ability to read other people’s emotions and have the ability to cheer them up or calm them down (see reference here). The second area is adaptive skills, which is the ability to adapt to your environment especially in daily activities. I like to think of this as “street smarts,” meaning someone with high street smarts know how to live and adapt no matter what environment they are in (like living on the streets).   

I can tell you that these social and adaptive skills are just as, if not more important, than a high IQ.  A person with a high IQ that cannot relate to society can end up feeling alone, dejected and depressed. A person with a high IQ that has low adaptive skills will have struggles positively contributing to society.  Human beings are social creatures so this makes sense. If you have brilliance within you but you can’t relate to others, work with others or have relationships with others, this is a different limitation, a “social disability” of sorts. On the other hand, 99% of people with Down syndrome have reported being happy with their lives, and I think that is a reflection of how they relate to others around them. 

Even with IQ ranges, you shouldn’t limit or assume someone with Down syndrome is intellectually disabled. I read about a child with Down syndrome whose parents never gave up on her health issues and never limited her cognitive ability. So they read aloud to her everyday from a little baby, and she grew to love and devour books. By the time she was school age, they had her IQ tested and her IQ was 105. I also met a mother whose child with Down syndrome scored in the top quartile in reading in Maps testing. She also constantly exposed her child to books, and that love for books led to improved reading skills. This child is also fully included in her school district, which I also think helps. 

I do caution allowing having your child’s IQ tested if you have any suspicions that the results would end up with you or someone else limiting your child. I have a little understanding of how some of these tests work having gone through them for my older son. Now my older son’s test results came in quite high. I do not share this with you to brag, but I want to tell you that these tests give you a very limited perspective of your child’s strengths and weaknesses. Our child does not act like some brainiac genius. He is very good at testing and he is sharp and loves puzzles, so this kind of testing is well suited to how he thinks and operates.  He also has been fortunate to have been tested twice by adults that he has felt comfortable with and that he wanted to impress, which always helps. But he has his weaknesses too.  And I know other very bright children who have not tested well because they don’t speak English well or have behavior issues (like fear of strangers or a sense of humor where they will say the wrong answer on purpose) that diminishes their score from their true potential as measured by the iq test. I have no doubt that people with Down syndrome are unfairly tested also because these tests do not tailor to how they learn or communicate or give adequate time to process things as their processing ability is slower than typical children, as well as being conducted by personnel that may not understand them. And they have no connection to the questions being asked, there is no incentive on answering the questions being posed.  Instead of asking how to solve a puzzle, maybe ask how they would go about getting their favorite toy off the table because our little guy has impressive problem solving skills when it is for something he wants. Because of this, I think that standard IQ tests are not necessarily a fair reflection of their true intelligence. 

I have also heard about mothers being concerned about their baby not being “smart,” and that their baby will have an intellectual disability. That may be the case, but I think you may find your child will surprise you. Our son doesn’t like cooperating “on demand” or being forced to do something he isn’t doing on his own, which makes me believe he wouldn’t perform well in a testing environment even if they asked him to do things I already know he can do. He also doesn’t consistently speak, although he has said a few words a few times but not on a consistent basis, but he communicates with us, even though he doesn’t sign (some children don’t use gestures and are more verbal in nature and we believe Luke falls in this category). But he understands words and communicates to us through his actions. When I ask him if he wants books, he crawls to his books so we can read them together. When he wants to sleep, he crawls to his room or points in that direction. When he wants a piggy back ride (his favorite thing these days), he crawls up behind me and pulls to stand and slaps my back with his hands. When he acts fussy at mealtime, I ask and sign “juice” or “cracker” or “drink” and he calms down knowing that I have gotten it right. Honestly, we saw a similar pattern in our older son who didn’t sign or speak or show any clear cognitive understanding of spoken words until around 14-15 months old. So it doesn’t concern me too much because I believe that Luke will find a way to communicate with us. So don’t under estimate your child and they may surprise you. I also believe each child has their own unique set of gifts and challenges. As their mother, it is up to you to help them hone these gifts and to ease their challenges. It isn’t easy sometimes, but the rewards you reap are so worth the effort. 

My mother in law works in a non-profit that assists adults with disabilities, including those with Down syndrome. She told me about one woman with Down syndrome that grew up in a trilingual household, and can understand and speak 3 languages (maybe not fluently but still!), which is more than what I can say for myself!  She also said that this woman is a social butterfly who always addressed everyone she meets by name, social skills that would probably put many of our own social abilities to shame. 

There is another man with Down syndrome that is not a recipient of their services but works for an armoured car company for Pace tickets that are dropped off at their office. She said that he is equipped with a gun, just like any other armed guard, and drops off the tickets unaccompanied. This is a very big responsibility that I am confident that this person takes very seriously. In fact, many employers report that their employees with Down syndrome are hard working and have a positive impact on the workplace. 

I read someone’s blog that suggests that in order to truly be a good example of inclusion, we should have friends with disabilities. I like this idea. I would like to have the woman who did the webinar as a friend, not because she has Down syndrome, but because she is smart, a caring mother and seems like a good person and one I would like to call a friend. There is another man who interned at Gigi’s playhouse who I met when Luke was just born that seemed like he had a good mind for business (which always interests me) and I would enjoy talking to him about his internships and the people he has met through it. Unfortunately, those are the 2 adults so far who I have had more in depth conversations with, so I can see where we have common interests and similarities. But I certainly would love to meet more. 

So what does being “smart” mean to you?  After reading this, I hope it means more than just someone’s IQ. I hope that one day having a high social IQ and high adaptive skills is just as respected as someone with a high IQ because intelligence comes in many forms. 

31 for 21: Brotherly Love

Luke is lucky to have a loving older brother that adores him as much as Luke adores his brother.  In fact, 88% of siblings report feeling they are better people by having a brother or sister with Down syndrome. Even Kaden’s friends shower Luke with attention and include him into their activities, even though they are 6-8 years old and Luke is only 21 months. 

The other day, Luke crawled into the room where they were all playing quite roughly in the bouncy house. They all stopped and asked if Luke wanted to come in. So Luke climbed in and they played with him, giving him balls and helping him up and down the slide. It was very sweet to see. 

Then the past weekend, Luke crawled into the playroom when Kaden had a friend over and they were eating lunch. So he grabbed a play arrow and started to pretend sword fight with Kaden and his friend. Then afterwards, he sat in a chair and ate pizza and drank apple juice from a pouch just like one of the boys!  

I have heard of others who have a sibling with Down syndrome who ended up adopting a child with Down syndrome. So people who are concerned that their sibling would be a burden, would probably wonder why they would do such a thing.  Why double the burden on yourself they might ask?  But they spoke of such love for their sibling and knowing just how wonderful and capable people with Down syndrome are. And that is a gift that parents and siblings have, as well as close relatives and friends. They know how caring, fun, capable and smart (yes smart!) people with Down syndrome can be. They see them for who they really are and not everyone sees that, especially at first glance.  

They know this wonderful secret that not everyone is privy too, that people with Down syndrome are so much more than most people give them credit for. It gives these siblings great perspective as well as the desire to share that knowledge with others, and are often times great advocates for people with Down syndrome (take Dr. Brian Skoto for example who has a sister with Down syndrome). Maybe one day, the majority of people will see what they (and us parents see). That most people will see our children for who they really are and not just the diagnosis.