Neurotics Anonymous

I have started to do more public speaking about my experiences as a parent of a child with special needs. To me, it is all about awareness, if you couldn’t already tell this from this blog. Unfortunately there needs to be more awareness of what parents go through when receiving and coping with a diagnosis, especially when it comes to the world of helping professionals. As a helping professional, I can admit that I was clueless about all of this before I started this journey.

Recently to prepare for a presentation, I did a little research on the nature of the published professional literature on parents with children of disabilities. I am afterall one of the parents now, so I should know what is said about me, right? In the Handbook of Disability Studies, Phillip M. Ferguson (2003) gives a very nice overview of what has been published about parental reactions to their child’s disability. I will be discussing these in a number of postings. I really appreciate Ferguson’s work on summarizing the literature on this subject and hope you find this interesting as well.

Ferguson identifies the psychodynamic view of parental reactions as being most prominent in the published literature. He notes that this area is receiving less attention more recently, but that the single largest number of publications centers on this view. Psychodynamic (quick…think Sigmund Freud) looks at defense mechanisms and neurotic paths that parents can take in reaction to a diagnosis of a disability. Doesn’t this sound uplifting? So we see things like hostility, denial, grief, and guilt. These are viewed as problems. Pathology. But Ferguson raises a great point (and becomes my hero in the process) – he states that it may be possible that through viewing parents this way some professionals may avoid having to look at their own inadequacies in their performance with clients. Like did they give the diagnosis in the best way possible – or was it over the telephone and one parent having to tell the other like was in our case? Are strengths discussed? Or is it just centered on weaknesses? There are so many things that professionals should consider in talking to parents about the needs of their child. Just who might be the neurotic one here? The parent? The professional? Both? Neither? Let’s try to get more and more possibilities of it being neither! This can only be done through awareness and learning. Actually Ferguson also states that what was once seen as denial may actually be more of a denial of insensitive terminology used, like the r-word. Another area for awareness. So much to do, but so little time, right?

-Karyn

March 21

03/21 is World Down Syndrome Day. The date symbolizes Down syndrome because there are three copies of the 21st chromosome.

Down syndrome was first described in 1866 by Dr. John Langdon Down, hence the name Down syndrome. But it was not until 1959 that the cause of Down syndrome was known. This year is the 50th anniversary of the Professor Jerome Lejeune's publication indicating that an extra copy of chromosome 21 is the cause of Down syndrome. Both Lejeune and Down contributed their own time and money to advocate on behalf of families and individuals with Down syndrome.

For more information about World Down Syndrome Day, please visit www.worlddownsyndromeday.org

Please remember that March 21st is World Down Syndrome Day and please tell someone about it! Thanks!

-Karyn

Good Grief

In 1969 Psychiatrist Elisabeth Kübler-Ross wrote a book called “On Death and Dying.” This book outlines a five stage model of grieving that Kübler-Ross believed most individuals experience when faced with their own terminal illness and impending death. This model has been applied to grief and loss situations, including going through the loss of someone significant in one’s life. Interestingly, at the end of her own life Kübler-Ross was plagued with a series of health concerns and told others she was in the acceptance stage of her own death two years before she actually died.

This model of grieving can also be applied to having a child with special needs. As Emily Perl Kingsley stated in Welcome to Holland, the anticipation of a child is met with having so many dreams and expectations. When you find out that the experience will not go as planned, there is a loss there – a loss of a dream. I have a beautiful daughter, Quinn, and I love her with all my heart. But I am also experiencing a loss of what I envisioned life would be with a daughter in my life. I guess you could say that everyone experiences that to some extent because one’s children rarely live 100% up to one’s expectations, but there is a loss there when you learn that your child will face more challenges in her life than you expected and of course wanted. Nobody wants their child to have such challenges to overcome.

Kübler-Ross’ model is as follows:
Denial – “This can’t be happening to me!” Oh I remember that one. When I was awakened from a nap at 18 weeks of pregnancy and heard those words “Trisomy 21” I was in shock. I thought there was no way this was happening to me. I proceeded to go on the internet and look up how inaccurate amniocentesis tests are. I can smile at this now, but what I basically found was how ACCURATE they are – but that didn’t daunt me from still searching and searching away on the internet. I think it is safe to say that I am no longer at this stage. There really is no denying it anymore.

Anger – “How can this happen to me?!” Anger became directed at some of the reactions I received from people. It is generally not nice to say to someone “So are you going to terminate?” when they proceed to tell you the news that their unborn child has Down syndrome. I also was ANGRY at a doctor filling in for my regular physician. He obviously did not read my file. When I reminded him that the baby had Down syndrome, he slumped down in a chair and said “You know they are r-word, right?” and he looked depressed and bothered. I thought, “Gee I am sorry I brought you down with this news!” In my experience, my anger tended to be directed at the insensitivity of some individuals. Some parents may direct it at professionals in the system if they feel their child’s needs are not being met. It can also relate to transference of feelings from one insensitive person that you had to interact with to someone who reminds you of that person given their position or personality.

Bargaining – “Maybe if I …” I think I am still here to some extent. Well to tell the truth, I think a parent can go back and forth between all of these over time depending on the situation and what you are facing at the time, but a higher percentage of time can be spent on the higher levels as you work through some things for yourself. Getting back to bargaining, this is where I am in my obsession and quest to get Quinn all the services I possibly can. If I do that, maybe she will be higher functioning. Sometimes I feel so desperate for this. This could also come in the way of experimental treatments that may be out there. They may have some benefit, but parents may reach to them because of this hope things may be improved in their child’s life because of them.

Depression – “I’m so sad, why bother?” This also comes and goes for me. I don’t allow it to last long (quite frankly I am busy and distraction on other things I have to do helps me in this way). But the depression comes when I think about the future. I just get sad not knowing what things will be like. Sure I don’t know what things will be like for the boys either, but it is just more complicated with Quinn. Will she have someone looking out for her if we die before her? Will she find love? Will she be assaulted and victimized if we aren’t around – that is a huge fear for me – I just want her to be safe. Now that I am thinking about all of this, I guess I am still in denial on some things. To help guard against the depression, I have this thought that Quinn WILL marry either George or Cameron (two awesome little guys with Down syndrome). Now I know she probably won’t, but I can hope, right?

Acceptance – “Things will be ok.” I go back and forth into and out of this. Some days I feel that I am totally fine and other days are rough. I think this is common for parents with children with special needs. Like I said maybe in the future I will spend more time here and less time in the other areas. I can only hope. Acceptance also comes in finding the right balance between therapy and life. Getting your child services, but not letting services run your life.

If I had the power and choice, I can be honest with myself and know that I would have never have requested to go through this in my life. It is not something that I wished for. But now that I am experiencing this, I realize that I am learning so much throughout this process. Maybe this is a good kind of grief for me. Maybe it is something that will make me stronger, better, and more empathetic to others. Once again, Quinn is my wise one, and she knew just what her mommy needed in her life.

-Karyn

The Moral to the Story

I often wonder why having a child with Down syndrome happened to our family. I don't mean a "Woe is me, why me??" that kind of thing. That feeling has passed a while ago (let's hope it stays that way). I mean more of what is the meaning of this in my life? I work with a lot of individuals who go through some difficult and unexpected events in their lives, and they have difficulty understanding the meaning behind these events. You can get stuck in denial and/or despair and/or anger, or you find some meaning behind it all. I have always tried to be empathetic to my clients going through difficulty moments, but now it is a bit different for me - I think I can actually relate on some level. I just feel that Quinn is helping me in so many areas of my life. Some people call individuals with Down syndrome genetically enhanced - what I really think it is that they can enhance parents and others around them.

Sometimes an event that brings you so much pain can also bring you so much comfort and happiness. Sometimes you have to decide if you are going to be a victim or a survivor. Sometimes it is not a disability, but actually an ability. And sometimes you take four steps forward and then slide three steps back. But that is alright. This is a journey that I am learning from. I think it will be a journey that changes me more than any other one.

You know how you read those fairy tales and there is a moral to the story? Won't it be interesting at the end of my life to know what was the moral to my story? I really hope it is a good one, and it centers on this journey as a family.

-Karyn

Update on Willowbrook

I finished the documentary that I was talking about earlier, the film Unforgotten: Twenty-Five Years After Willowbrook. I highly recommend the film for people who are interested in this topic. It follows at least four families of individuals who were placed at Willowbrook during the time of Geraldo Rivera's investigative reporting. It shows what their lives are like now and family members reflect on the experience of having their child, brother, or sister at Willowbrook. One family really stood out. Guess why? I know you are saying, "Um I guess it would have to do with someone having Down syndrome, right?" I know it is shocking that I would be focused on that! Anyway, it was such a powerful story. Patty, the child who was placed at Willowbrook, had sisters who talked about their experience. They mentioned how Patty was such a beautiful baby and how they just loved her. Then came the day that she was placed at Willowbrook. They never really knew why and it wasn't until they saw a photo of a "mongoloid" child in a collection canister on a store counter that they recognized that their sister was similar to this child. That is what they used to call people with Down syndrome and the term still slips out here and there, although it is no longer accepted. They also shared that they road a bus with other families to visit children at Willowbrook, but nobody talked to one another - everything was so disconnected and the support wasn't there. Another powerful comment from the documentary was how when they would walk up to Willowbrook, they always saw a child in the window upstairs looking out calling for mommy or daddy. That just breaks my heart. Remember how I said that stuff like this is still going on today? Why don't you visit the button I have to the left side of the blog? It is for Reece's Rainbow. On the connecting page go to the bottom and click on Russia. Look at the girls with Down syndrome who are in an orphanage in Russia. That could have been Quinn at one time in our own country. I am thankful that I live in this period of time. I am thankful that I feel that I can talk to others and share my experiences with all of you. I am thankful that I don't have the shame. I am thankful that I am learning and growing every day.

But I would be more thankful if all children with Down syndrome throughout the world were accepted and loved in families and homes of their own. I would be more thankful if there wasn't a stigma attached to disabilities. I would be more thankful if the dreaded r-word was gone, vanished into thin air. And I would be more thankful if my daughter had easy access to services, and I didn't have to fight fight fight for stuff (and seem like a five letter word that starts with B and ends with h). But for right now, tonight, I am thankful for what I have. A daughter that doesn't have to see the inside of an institution, who has brothers who love her, is healthy and medically cared for, and who has the safety and security of a home.

-Karyn

The Power of Words

By now you might be wondering why I am obsessed about this r-word thing. You may be thinking, what is the big deal? Karyn, aren’t you being a bit sensitive? Okay, I admit that I am biased. I have a vested interest in this. But I do think use of the r-word needs to be taken more seriously. Even before I had Quinn, I had to occasionally use the diagnostic term from the DSM-IV-TR (used by psychologists and psychiatrists), which is diagnostically called Mental Retardation. Every time I said that term, I felt a twinge in my stomach. It is just a term that is centered and built on such a difficult history – something I talked about in previous posts related to past institutionalization and stigma of families with children with cognitive disabilities. In my profession, I always leaned to saying “MR” or saying Cognitive Disability (the term used in the school systems in my State). It is my opinion that the American Association of Psychiatry (who publishes the DSM-IV-TR) needs to change the diagnostic term Mental Retardation to something more appropriate in their next revision. The r-word has turned into a slang term, used in jokes, insults, etc. It is about time my profession does something about this issue and use a more sensitive term. The APA took homosexuality out of the previous editions DSM because of how society changed, and APA also changed the term Manic-Depressive to Bipolar Disorder, so why aren’t they doing anything about MR? That would be a nice first step, but more needs to be done.

I was at a meeting with the other clinical staff from work not so long ago. In the meeting, people started to use the r-word, or retarded, to talk about a client. It was like I was being stabbed in the chest over and over again. I looked around the room wondering why can’t we see how these words impact people? Why can’t my own profession get their act together? And then I mustered up the courage to speak out and say, “Can we please use the appropriate diagnostic term MR or Cognitive Disability?” One of the individuals who said the r-word in the meeting approached me after to say that he was sorry and he will be more aware of the words he uses. He didn’t do this to intentionally be hurtful; it was just out of ignorance or just not thinking at the moment. I am sure others felt uncomfortable during that discussion. How many times as people do we not say something because we don’t want to be bothered or stand out? Instead we just sit there and think in our minds that something isn’t right. We don’t want to rock the boat, so why speak out that this word isn’t appropriate? They will stop using it soon enough, so why say anything? Well I just can’t do that anymore. I have a little girl at home who is counting on me to do the right thing. Something has to change for her to have a better life. Do you know that the Special Olympics conducted research on how people see individuals with cognitive disabilities? In their Multi-National Public Opinion Study of Attitudes toward People with Intellectual Disabilities they actually found throughout the world that a large percentage of people still believe that people with cognitive disabilities should be segregated in the schools and workplace. This is my daughter they are talking about. Words reflect our society’s attitudes and I so hope that you don’t join a lot of people and just stand by and watch when a group of people who have not harmed a soul and have a heart as pure as gold get picked on, put down, or treated insensitively whether it is because of ignorance or hatred. Please please please say something the next time you hear the r-word used, whether it be by a group of professionals or a group of teens. Please start discussions about the use of the r-word and how it needs to change. Maybe show them some of the resources I have on here. Please.

Lastly, I must say that I love Soeren Palumbo. Every time I see him I think of how someday Riley and Aidan may be like him, giving such beautiful speeches and loving their sister so much. I have posted about him before. I came across another speech he made called the Power of Words (hence my title). I have the link below. Please go to this page and view this speech. It is similar, yet different, than the other one. He talks about an actual situation he has been in with his sister, being in a store and seeing others make fun of his sister, calling her the r-word. Think this doesn’t happen? Think again. One person actually said that they hate it when the “r-word“ are allowed in THEIR store. Sound like another hateful time in our history, doesn’t it? But the worst part was that nobody who heard this reacted. They just continued on doing their shopping like this is an everyday occurrence. Please don’t fall into this group of people who do nothing. By doing nothing you are making it okay to treat people in a hurtful manner.

http://www.specialolympics.org/video.aspx?id=6066

-Karyn

What is Perfection?

What is perfection? Do we really even know? You look at the media and you see people like Angelina Jolie and Jennifer Lopez who are held up to be the standard of beauty and perfection, but is that really what it involves? Tonight I had the privilege of holding Quinn for quite a little while as she was dozing off to sleep. That is kind of rare for me given the combination between my schedule and her temperament. And I think I saw perfection. She was looking at me deep into my eyes as I was looking at her. She smiled and moved her foot to purposefully bump into my face (she must have been watching her brother Aidan who seems to like to do that too). Then she smiled HUGE – like “ha ha I got you mom.” I looked at her skin – I saw perfection. I looked at her eyes – I saw perfection. I looked at all those features of Down syndrome and I saw perfection. How do we know that we aren’t all meant to have three 21st chromosomes? Maybe it is the rest of us who are the ones who are missing something and because of this it is all the rest of us who are really the ones who are disabled. I was on my island today and LOVING it!

-Karyn

More on 3/31/09 - Plus John C. McGinley Rocks

I had already posted about March 31, 2009 and the eradicate the r-word campaign. Please remember this day and get the word out to others. We would be so honored if you too would be a Quinn's Crusader. Also please watch this awesome interview of John C. McGinley on the Bonnie Hunt Show. Try to get through it without any tears in your eyes; that was difficult one for me.



-Karyn

Willowbrook - A Sad History Lesson

I was a history major in my undergraduate education. I am always drawn to history and the stories of people at certain points in time. Now that I have Quinn in my life my history lessons have taken an interesting twist. I have started to study how our country has treated those with cognitive disabilities. I ordered an interesting documentary from Amazon (Unforgotten: Twenty-Five Years After Willowbrook) and I am admitting to the rest of the class that I have not fully watched it. But I have watched the special features which included a 1972 investigative report by Geraldo Rivera and did some research on the internet. I can't wait to learn more after watching the full documentary, but I have decided to share what I have learned thus far in order to make my history professor Dr. Cedar proud (always the A student I am).

Willowbrook State School was opened in 1947. It was a state-supported institution for children with cognitive disabilities. It was located in Staten Island, New York.

In the 1960s there were unethical medical studies conducted at Willowbrook on the population of patients there. Between 1963-1966 medical researcher Saul Krugman intentionally infected children placed at Willowbrook, either orally or by injection, with hepatitis in order to study what would be the most effective treatment. Yes, you read that right, he intentionally made these children who were cognitively disabled sick. Fellow history majors or history lovers, here is an alert - doesn't this sound somewhat similar to the Tuskegee Syphilis Study from 1932 to 1972, although in that situation African American males with syphilis were not treated when they could have been just because the researchers wanted to study the impact race had in the progression of the disease. In both of these situations we unfortunately learn that some researchers and others in society did not place much worth upon anyone of diversity, whether it be due to race or cognitive disability.

In the 1970s Geraldo Rivera (who at that time, pre-Al Capone's vault - remember that?, was an investigative reporter in New York) conducted a series of investigations at Willowbrook. This is what I watched on the special features of my dvd. Very very sad and difficult to watch. But I had to watch it. I can't help it. I need to see these things and know about them. The investigative report makes the institution where Molly Daly (from Where's Molly - discussed in a previous post) was placed look very mild. At Willowbrook, there were deplorable conditions such as children running around with no clothing, lying in their own feces for hours and hours, having no stimulation, overcrowding, and abuse. I never knew this about Geraldo that he did this wonderful thing of bringing this story to the public. Why didn't I know this about Geraldo? I kind of feel like I misjudged him all these years. After Geraldo's report, changes slowly followed. You know how bureaucracy is. There was a class-action lawsuit. The publicity of Willowbrook also contributed to the passing of the Civil Rights of Institutionalized Persons Act of 1980. Willowbrook ultimately closed in 1987. Now a college campus stands on a place that once was a state-sanctioned place for mistreatment of those with cognitive disabilities. I wonder if those college students really know what once went on where they walk and learn? I wonder if they are taught about awareness and advocacy for those with disabilities? Maybe...because there is the Institute for Basic Research in Developmental Disorders there by the campus. Maybe there is some regret for past wrongdoings.

And the biggest thing I wonder is why didn't I know this before? Does your average person know about Willowbrook and it's history? Have they seen Geraldo Rivera's report? No offense Dr. Cedar, but had I known about this maybe I could have studied this for my independent study senior year. Here I was born in 1971. While I was safe and sound - fully clothed and loved - in my home growing up, people were suffering at Willowbrook. People (who were very similar to my now daughter) were laying naked curled up in a ball with no care from staff for hours and hours and hours. They had to eat a full meal shoved in their face in five minutes or less because that is all the time that the staff had for them. And forget about teaching self-help or doing early intervention. And while I was growing up I was completely clueless about all this happening right here in my own country. Nothing like having a child with a disability to really kick start your education.

-Karyn

Smiles and Trials

In the short time we have been on our journey of being parents of a child with special needs, I have learned about the highs and lows of intervention services. Much to our disappointment our county offered us a very limited amount of service. In my personal opinion, this is disgraceful given that research has indicated the impact early intervention can have on the later functioning of individuals with Down syndrome. But I guess there are other more important areas for our county to spend money on than my little Quinny. This is a difficult realization to a parent.

Thankfully we have met wonderful individuals who could advise us and we were able to do some research and find out that we could go private for the majority of our services. So you do the comparison:


What the county wanted to give us: Once a month early educational service and once a month physical therapy (which I had to fight for by appearing to be a "difficult" and demanding mother).

What we get now: Once a week physical therapy, once a week speech therapy, once a week occupational therapy, and once a month early education service.

So what do you think, which one is better?

Luckily we found that our insurance would cover so many sessions and then a State program called Katie Beckett will pick up the rest.

Easy, right? Well, not exactly...

The State program is slow in approving things, like a walker for Quinn. Quinn's physical therapist really wants her to have one at home. Quinn has been doing an awesome job using the walker in therapy and it will help her learn to walk, but the State doesn't want to pay yet. They want to wait until she is MORE delayed and then maybe, yes maybe, they might pay. Again, who cares what the research suggests and that this may be of great benefit to my daughter. Going back again to the sad realization as a parent.


Well that is the trials part, but now the smiles...Quinn's physical therapist is a BEAUTIFUL person and she has taken it upon herself to help find Quinn a walker. She contacted families that she knew had one that they were no longer using, and it looks like we will be able to borrow one from a family she knows. Also another smile...a BEAUTIFUL family that we don't know who are helping us out because they know the struggle.

The things you learn having a child with the disability...

Sometimes the priorities of others unfortunately do not include your child. Like sometimes people are told to terminate a pregnancy because of a disability. And sometimes they don't want to give you services that will help your child long-term. Or sometimes you hear an insensitive joke or lyrics to a song. You just learn that there is still stigma, and although we have come a long way - we have some distance left to go.

You have to fight for services. This may make you seem as a difficult pain in the hind end to the all-knowing professionals. In an interesting twist of fate, however, I am one such professional (a psychologist) and I have become humbled by this experience. I am embarrassed to admit that there was so MUCH that I didn't realize until Quinn came to my life. This is again an example of Quinn's wisdom - to put me in my place. Anyway, my thought about all of this is that you have to constantly be learning, researching, and advocating to help your child. What are families who just can't do this left with? Hopefully they are not just left with the crumbs.

And - this is the light at the end of the tunnel - sometimes you meet the most wonderful people who go above and beyond what they need to do to help you. It is from these people that you do see that somebody values your child and you get some hope. You get a feeling that things may be ok after all. God bless Quinn's physical therapist - we were so blessed to get to know Sarah, a truly beautiful woman.

-Karyn

Quinn Island

I shared Welcome to Holland with all of you, but there is another analogy that I would like to make to describe my experience more fully. To me, having a very young child with a developmental disability is like being on an island. It is a beautiful, calm place of peace. When you are on the island, alone with your child, everything is so clear and calm. As you hold and look into the eyes of your child, it is just love that pours over you. It is the best feeling in the world. You just enjoy the beauty of the place where you are. You know your exerience is unique and you really value it. But, unfortunately, you are never allowed to stay that way. You have periodic outsiders from the mainland who come along who tell you all about the mainland – reminding you of what you are missing by being on this island. They keep reminding you that your experience will be different from others through their direct questioning of where your child is in developmental milestones. Your heart goes to the mainland – you really wish you could travel there and experience life there, see how it is different, but you fully know that you just can’t ever go there. It just isn't a possibility. You know your child will be different than the norm - there is no getting around that no matter what you try. Your heart aches, and you just want to go back to being alone on the island without a care for the mainland.

In addition, on this island you have periodic thoughts about the future. Worries about what it will be like as you stay on this island longer and longer. Worries about what your child will do in the future. What will her functioning be? What she can and can’t do? She probably won't be able to live the exact life I have. Certain things will probably just not be a possibility. It all depends upon her functioning which is just a big question-mark at this phase. Anything can trigger these thoughts, things that the average person would never even think about will send you in this tailspin. To you, it is like you just want to deny the future and only think about the moment you are in – this is the only thing that brings you comfort and peace. You desperately want to just stay on the island and the beautiful moment that you are in, but periodically all these forces just seem to work against you.

-Karyn

Meet Another Quinn's Crusader: Aidan, Age 4

Quinn has another big brother, Aidan, age four. He will be her protector; I can feel it. Anyway, with Aidan I notice something way cool - he doesn't really seem to think that Quinn is different than the rest of us - she is just his sister and someone that he loves. We have as a family started doing more with the Down syndrome community, so we are at a lot of events where there are people with special needs. Does Aidan notice anything different about them, no. To Aidan, they are people just like the rest of us. I think about this a lot and how this is EXACTLY what I want him to do. He does "know" that his sister has Down syndrome because the other day the term was mentioned and Aidan said, "Oh Quinny has that." He knows, but he treats her the same. That is my dream for my little girl and her big brother is already doing that for her. Another awesome thing that Aidan said about Quinn was that she is a pretty princess. He just knows how to get at my heart.

-Karyn

A Short Film to Watch

If you go here, you will see an excellent short film, Be My Brother. It is very entertaining and relates to Down syndrome.

http://tropfest.ninemsn.com.au/?videoid=79896813-777c-4bfc-832a-5f94b692ef53&tab=1


-Karyn

Meet an Advocate: Riley, Age 8

My oldest son, Riley, has become an advocate for individuals with special needs. He first found out that his baby sister had Down syndrome while I was pregnant with her. For anyone who hasn't met Riley, you must know that he is a very sensitive, gifted child. He has a beautiful heart. Riley's response to hearing that his baby sister, Quinn, had Down syndrome was excitment and happiness. He said that then his sister would be like this little girl from our church, Grace, who also so happens to have Down syndrome. Riley always loved Grace and saw all of this as a good thing. He said we could learn a lot. See things a different way than most people. Doesn't Riley have a beautiful heart? Remember my post about Jeff Daly and his little sister Molly? Maybe we adults should take a lesson or two from the children. Sometimes they seem to have it more together than we do. While I was crying and thought my world was going to end, Riley was excited about this new possibility. He is my hero, and I have certainly learned a lot from him and will certainly continue to learn.

Recently I heard a very cool story about Riley. He has been all about educating his classmates about Down syndrome. He has talked to them about his little sister, the Buddy Walk, and even had his teacher read a book about Down syndrome for story time. One day I was talking to my friend Maria on the telephone and she told me wonderful news. Maria's daughter (who has only seen Riley a couple of times) was in her Sunday School class, where there just so happened to be a little girl who was from Riley's elementary school, Hallie. Hallie shared with her class that she wanted to pray for Riley and his little sister who has Down syndrome. Riley's message of love and acceptance went all the way to this new group of children he never met. Riley is indeed my hero and if he can advocate and get his message to people he never even met, I certainly can do that too. Maybe I am doing that right now? I hope.

-Karyn

Welcome to Holland

Emily Perl Kingsley, a mother of a son with Down syndrome, wrote a awesome essay describing the experience of having a child with special needs. This brought me a lot of comfort when I was pregnant with Quinn and still gives me a lot of comfort today. I also love love love the following You Tube video of the essay. Enjoy! Once one is in Holland for a while, you do see the beauty!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.




-Karyn