Deep Thought

What would the world be like if more people in power knew of what it was like to have a child with special needs? I am assuming our governor has two typical sons, and maybe I am wrong....but I doubt he would leave the door open in his budget repair bill to have the benefits for individuals with disabilities be able to be cut for years down the road if he knew what it was like to have a child with a disability. I read his bio online just a moment ago and nothing struck to say that he knew what it was like to have to fight for his child to get services, equal treatment, stop having seizures, be accepted in this world, all the things that one might have to do. I don't even care about the union stuff as much as I care about this issue - this impacts my daughter and how I see our society as valuing her. And this to top it all off, this topic isn't even talked about very much in the media. Talking about disabilities doesn't seem to be sexy enough for the media. Long story short, I will do what it takes to give my baby girl what she needs. Now is not the time to be a state employee, so I am leaving state service. Call that a contribution to the budget repair bill. One less person for our governor to lay off.

-Karyn

IEPs Should Not Be Like Buying a Car

Quinn has started early childhood classes. And she LOVES it!!!

The whole process setting this up sucked. We are happy that we finally got what we did; she is going to four half-days per week and then we are supplementing with private therapies, including music therapy - my girl will be a rock star - ha ha. BUT that being said, the whole process was well...I'd better not say. Let's just say I would insert a bad word greater then sucked back there. As many of you who visit here know, things have been complicated in the last year with additional diagnoses which have greatly impacted Quinn's development. This was minimized and the OFFER from the school district was two half-days a week of school. It was said that they don't do more. When we didn't immediately agree, then they still only offered three half-days a week. What is this back and forth crap, am I shopping for a new car? Then we walked out the room without signing the IEP. After I informed them that I would be getting an advocate to just make sure because her placement should be based on her individual needs and not what they tend to do in our school district, their tune completely changed. We could get whatever we wanted. Crazy, huh? I didn't even get the advocate, I just said I was going to. Kind of makes a person believe they weren't doing what they were supposed to. Anyway, we settled on four days a week versus five because then Quinn could go to just one school for all four days (if it was five, she would have to go to one school for three days and another for two).

-Karyn

Evaluation Part 1

The evaluation of my daughter to find out whether she has a fourth diagnosis (i.e., Autistic Disorder) – Part 1: The parent interview:

1. It would have been nice to not have to worry for an extended period of time while waiting for the appointment to start. The apology for being late was nice, but we could tell you weren’t prepared for us.

2. It is recommended to actually read the file prior to starting an evaluation, especially if you proudly note that you have collected and received the information. Knowing that Quinn is actually a girl, not a boy, would have been a nice touch when it comes to the development of rapport and showing us you actually reviewed the file material.

3. Your reaction to my profession was priceless. Yes, I am a psychologist. We do sometimes have children with special needs after all. Sorry but I don’t think I will be following through with your request for my business card so you can refer to me, for I am not comfortable with that.

4. Knowing the expert on co-occurring disorders of Down syndrome and Autistic Disorder would have been a nice touch, especially given that if you find that my daughter has Autistic Disorder I am going to double-check with this expert. I liked how you tried to be very calm with my words on this subject.

5. Don’t tell me inaccurate information on what has been “found” related to psychological testing. I doubt if there is any research to suggest what you said to me. In our field I know we prefer to give tests individually to the child without the parent in the room, but a tendency towards increased performance under these circumstances is not often the reason.

6. NEVER EVER SAY TO A CLIENT THAT YOU KNOW HOW WE FEEL. If you do indeed have a child with special needs and maybe have a hint of how I might feel, perhaps you should have self-disclosed that. However, given 1-5 above I am thinking that you do not (although I will ask that at the feedback, along with nicely telling you all the above – one psychologist to another). I don’t think you have any idea what it is like to be on the other side of the evaluation. It is actually a blessing and the most education you could possibly receive in the area of psychological evaluation. But this hasn’t been an easy road, for I am an individual who has always performed at the top of her class and then my world changed, I found out that I am an overachiever who is the mother of a child with a disability (DS). I ultimately found out though that DS, and this first diagnosis, was a blessing. It made my world a better place. Then, unfortunately, entered diagnoses 2 (IS) and 3 (Stereotypic Movement Disorder) and the possibly of 4 (Autistic Disorder) and I find with these additional three diagnoses that I only wanted my daughter to have a diagnosis of Down syndrome. I repeatedly feel robbed of the “typical” Down syndrome experience, if there is even one. I don’t think you know how that exactly feels.

But for now, I wait for part 2 of the evaluation and our results and feedback. Then I will speak my mind.

-Karyn

Living with a Gift

I love so many parts of this....



I need Quinny more than she needs me.

-Karyn

It Is About More Than American Idol

I cried. I actually cried. Tears welled up in my eyes as I learned the fate of Maddy Curtis. I felt a pain deep down in the center of my heart. I suppose some may think that I went overboard in my reaction to this young, talented girl I don't even know, but tonight was about much more than just a television program. It was about much more than American Idol. It was about acceptance for my daughter. It was about hope for her future being free from discrimination and hate.

Let me tell you about another experience this week, it might help you understand where I am coming from. I went to Target with Aidan this week. We were going along with our cart down the aisle. I could tell up ahead there was a woman with DS pushing her cart. I could just tell from behind - you tend to look for these signs when you have a child with special needs. This was the second time this week alone that I saw someone with DS. Normally I sneak glances at the individual with DS, glancing and wondering will be Quinn's future if this person is an adult, but this time was different. Instead of looking at the woman, I looked around me and took in other people's reactions. I watched the crowd around me. I saw a child watching this woman. He was walking backwards, unable to turn away from her. He had a disgusted look on his face. I saw his mother look and ignore his reaction to this woman. I saw ignorance. I saw discrimination. I saw hate. I decided right then and there that I have been approaching these types of situations entirely wrong. I will no longer steal glances at the individual with DS, I will instead watch those who think that no one is watching them. I will watch them. And I will let them see how it feels. I began staring at the child with a disgusted look on my own face until this child looked at me, noticed, and turned away. Sure, it is a child. I am an adult. Maybe it isn't nice of me, but I am tired of hate, prejudice, and discrimination. I see that this starts early. And it grows. It festers. It turns into use of words that hurt. It causes pain.

I then turned to watching Aidan. Thankfully, he saw this woman, glanced at her, and then kept on talking and going about his business. I was so proud of my baby boy in that moment. I know that Quinn has touched our lives so much. I know that my boys will be better people for having Quinn. I get Maddy Curtis' message. I feel it in my heart.

So why do I care about Maddy Curtis? Because she represented hope for me....hope that others will see the beauty and love in the faces of individuals with DS and the faces of those who love them. Her brothers would have been cheering her on in the audience. DS would have been discussed. Maybe it would have been possible for others to see some positive images of DS instead of the multitude of negative ones. She represented my hope that one less person would stare and look like that at my daughter. I am so sorry Maddy that this didn't work out for you. You just don't know how sorry I am. Thanks for sharing your story and the beauty of having someone with DS in your life. I thank you. Quinn thanks you. We all thank you. It was about so much more than a television show for us.

-Karyn

Dance Like Nobody's Watching

It is February! Wow, where does the time go?

I finally had a little time to explore for more documentaries related to DS. I found this little gem. Please watch. I am in totally agreement with Paul's mother, I am completely different because of having Quinny.



-Karyn

Elizabeth Torres

Anita

-Karyn

Tying Your Own Shoes

A documentary...it looks good.



-Karyn

Placing Politics Aside

I didn't get a chance to watch the Sarah Palin interview on 20/20 on Friday night. I came home from work and just crashed because of the very long work week. I did get to watch it on youtube though. You can check it out there if you didn't see the interview. Out of protest for the repeated violation of person-first language, I am not going to link it here. Check it out if you want, it was pretty easy to find. I would just think that professional people in the television industry would be more conscientious about using person-first language. Oops I forgot that individuals with disabilities are discriminated against every day and they don't often get the same press and voice as other minority groups do - silly me, just how could I forget (sarcasm dripping from my fingertips as I write this).

I have mixed feelings about Palin. Even though we aren't on the same side of the fence politically, she is a kindred spirit on this journey. I always have to see whatever she has going related to her son, Trig. She is another mother who received a prenatal diagnosis just like me and because of that there is some connection or interest there. I don't expect those who don't have a child with DS to get it - how can I be drawn in this way to someone who is so politically different than me? It is just that you gravitate towards the stories of those who have something in common with your experience. This tells you that you are not alone - something I battle all the time.

Anyway, I found the article (link is below) very interesting. This story - the story of her son's diagnosis and birth was very interesting. Check it out HERE...

Here is a quote from the story and her book:

"God knew me: I was busy. Got to go-go-go. I’d always yapped about how lucky I was that my kids were all healthy over-achievers, self-sufficient. Now, I thought, I’ve got a tough job and other kids who need me. I just couldn’t imagine how I could add a baby with special needs and make it all work.

Unless He knows me better than I know myself, I thought a bit dismissively, God won’t give me a special-needs child."

Drat...she had to ruin it at the end with the violation of person-first language. But I forgive that because the message here in this part is something I can SOOOOOOOOO relate to.

Ok politically I am different from Palin, but I recognize that she is like me in this significant way. She has found strength from having a child with a disability. And for this, I honor her today.

-Karyn

Awareness Begins at Home

Last night I came home from work to find out that I had a situation to follow upon. Aidan and Riley were looking at photos on the computer from a recent event at school. A photo came up of a little girl who happens to have a disability. Aidan said to Riley that this girl was a dork and weirdo. Deep breath. How can this be? How can one of my own children say such a thing when his little sister is sitting right there who also happens to have a disability. On the good side, Riley was outraged about this. So I had a heart-to-heart with Aidan last night about this issue - we do not make fun of those who are different, namely those who are differently-abled. We celebrate them.

Would I have had this conversation if Quinn was not in our lives?

Probably, but I would not have the passion in my heart, the pain in my eyes, and the powerful significance behind my words. I owe all that to Quinn.

Although Aidan doesn't tend to be too serious most of the time, he totally got it. I could see in his eyes he was sorry. The power of all that comes from Quinn, my little girl who is so not loving life right now and who appears to be suffering from these shots. The shots that I both love and hate - love because I hope it will bring relief, but hate because I can see that it is making her very uncomfortable. These are the same feelings I have had about that extra 21st chromosome - a love-hate relationship.

Some people will never know (or just do not want to understand) what I experience and they will never truly get what you sometimes have to do for your child. God bless the ones who do know or at least try to understand.

-Karyn

Walk the Walk

We raised $3335 for the Down Syndrome Association of Wisconsin and had a great day! Thanks Wendy for the awesome photos! Thank you everyone who helped us!

-Karyn

Robert Pio Hajjar

This video is so inspiring and educational for all of us. It came into my life at such an important time for me and lifted my spirits at a time I needed it. Robert Pio Hajjar is such a beautiful, loving person. A leader who asks all of us about what is our vision, our purpose. Do something positive, like him! He looks at the positive, not negative. He is the founder of IDEAL-WAY, which believes every person should be included, deserving, equal, appreciated and loved. So true. So important. He builds us up instead of tearing us down and he taps into the philosophy of positive psychology, building on the strengths. I can't express how much hearing his message meant to me. He is the voice of my daughter. I cried tears of joy. Please watch. You won't regret it.



-Karyn

Kelly Fitzgerald

I have seen this a few places now, but I know that some people who read my blog don't necessarily read other DS blogs - so I wanted to share this with all. Kelly Fitzgerald is an inspiration, but more importantly her mother is an inspiration to me. What a great family and what a great story. If you haven't seen this story, please watch it.

Including Samuel

I love documentaries. I am always on the look-out for them – especially ones that have to do with psychology, disorders, prison, or disabilities because of my professional and personal interests. My post-doc intern gave me a head’s up on this one, Including Samuel by Dan Habib. Here is the summary of the film:

“Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib's award-winning documentary film, Including Samuel, honestly chronicles the Habib family's efforts to include Samuel in every facet of their lives. The film also features four other families with varied inclusion experiences, plus interviews with dozens of teachers, young people, parents and disability rights experts.

Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion.

Including Samuel has been featured on NPR’s All Things Considered, Good Morning
American NOW and in the Washington Post and the Boston Globe. Exceptional Parent magazine said “Including Samuel is a must see film.” The film won the Positive Images in Media award from TASH, an international group committed to the full inclusion of people with disabilities. The film was also screened at the Sprout Film Festival at the Metropolitan Museum of Art (NYC) and named “Best Documentary” at the Somewhat= North of Boston Film Festival. The global aid group Mercy Corps is using the film to support the Iraqi disability rights movement.”

The film will be broadcast at different PBS stations throughout the country. In the Milwaukee area it will be on Saturday, September 12th. If you would like to see when and where it will be broadcast you can here.

I am drawn to these stories of families trying to figure out the best way to raise their child and the best balance of services for their child our educational system. I am unsure how I exactly feel. I totally agree with the statement from the film that having a child with a disability brings the disability rights movement right inside your house and in your living room. It was an area that I was completely naïve to before Quinn. So many people are. In fact, too many people are. And that is the problem. I want Quinn to have the same rights as everyone else. I want to take away and erase the horrible history of how individuals with disabilities were treated. But I cannot. I have learned so much about how equal rights for those with disabilities is the final frontier of the civil rights movement – how sad that they have lagged so far behind in access and equal treatment. It is really shameful of our society to be this way. But on the other hand, I want Quinn to receive therapy and services, not just get 100% the same as everyone else – she needs an individual educational plan – one with the best fit for her. She needs to know that there are other beautiful girls and boys with DS. It is just so hard to balance.

Dear Parents

Whether it be in a forwarded email (those are the worst, aren't they), a posting online, or something I overhear one person saying to another, lately I have heard some bias. I have bias too - everyone has it. But I personally think it is important that as a parent of a child with a disability that I examine and re-examine my own bias, where it is coming from, and does it really need to be expressed. For if I expect some people to refrain from their use of the r-word and be more sensitive to those with developmental disabilities, then I myself have to look at my own insensitivity. That is why I like this PSA. It is a nice reminder on so many fronts.

Awareness Walk

What is Down syndrome?

It is a chromosomal disorder caused by the presence of an extra 21st chromosome. It is named after John Langdon Down, a British physician who described the syndrome in 1866.

But this definition is missing so much!

The definition above completely misses the mark in showing how Down syndrome can make your life better, richer, fuller, and pack it full with love. Down syndrome can bring you closer to the most beautiful, giving people in the world – people you wouldn’t have otherwise met. Down syndrome allows you to learn the joy of truly unconditional love for your child. Down syndrome teaches you that in something that brought you such pain, such as with the diagnosis of your child, such beauty and intense love can grow.

This is what Down syndrome really is. For the second year, our family is joining forces with another local family for the Down Syndrome Awareness Walk on Sunday, September 27. Because Down syndrome brings you closer to others, it is only right we walk with another family together as one team.

Down syndrome also is about struggles. Like the struggle of seeing your child develop at a different rate than typical peers. The challenge of possible complications in health. The challenge of advocating for your child to get the services they need. And, perhaps the biggest challenge, the challenge of discrimination, such as limited access to services, use of the r-word, jokes, and other invalidations or insensitivities.

This walk is important for many reasons. It helps us raise money for families and individuals with Down syndrome. This walk brings awareness to others of the beauty, love, and togetherness of Down syndrome. And this walk supports those of us on this journey of such highs and lows in our lives. Last year our team was huge in numbers, full of love and raised $4,150.00. We are proud of the photo of our 2008 team. It was beautiful to see the love and support we received from our families, friends, previous students, colleagues, and members of our church. We also received so many words of encouragement for the walk and the importance of this encouragement was priceless. Please help us this year by doing something. Some ideas: Join our team, start your own team, donate to the awareness walk, spread the word about our walk, pray for us, help others see that the r-word hurts others (don’t just let it pass someone’s lips without saying something), spend time with someone with Down syndrome, share our story – and the list can go on and on. Just please do something! We will forever be grateful.

You can visit our fundraising page here

Thank you for your continued love, support, and especially your prayers. We are blessed.

When It Rains, It Pours

So I tried to put my previous bad day at work behind me. Every day is a new day, right? Well the next day was not much better. Right away first thing in the morning, a staff (ok, she DOES have the reputation of being an insensitive person) uses the r-word to talk about a kid who I am going to see in her building.

I stayed calm, although my blood was boiling. I said I do not like the r-word, please don't use it in my presence (never mind how disrespectful to say that as an adult about a kid who is actually above average intelligence). OK I get Toltz's statement in my previous post - she is one of those people who would laugh and make fun of people with cognitive disabilities even as an adult or in old age. Unbelievable.

Then I talked to one of the adults in that group I observed the previous day where the r-word was used a lot. She said she didn't notice it at all. Despite the fact that I believe we once talked about this subject previously. Am I the only one who cares?

Please let today be a better day! Yesterday for the second day in a row I felt chewed up and spit out. Two more work days until vacation (from at least one job - ha).

-Karyn

Insensitivity

This was a horrible, horrible day on many fronts. Mostly because of other people not thinking or caring about the impact on others. What I had to deal with today...

Scrubbing graffiti off of a youth bathroom at work that wasn't from my group of kids, but if left there I would certainly become the scapegoat.

Realizing that someone else was not watching the kids they had in my room (who also ironically did the graffiti - notice a pattern), who proceeded to steal my febreze, dry erase marker, and most upsetting my DS awareness calendar. What is up that you can't notice such a thing happening right before your eyes!!!!!!!!!!

Then recovering my DS calendar (and febreze) and finding that the calendar was defaced and used to put graffiti (notice graffiti again, gee could this be a pattern) and all sorts of other things on it. Most upsetting is that the kid drew all kinds of "funny" (term used loosely) things on the kids on the calendar. Wow so nice. It is basically unusable.

All I wanted is to create a little awareness of special needs at work, and I get this crap. I am not as upset with the kids as much as how this was allowed to happen - adults should know better than to allow this. A little common courtesy and watching out for my stuff would be nice. Soeren Palumbo is right, the biggest problem is the adults.

Oh and then I was doing an observation today and over and over again I heard the r-word. I couldn't comment because I was only observing. Of course the adults in the room said nothing.

Well on the positive side, my own group of kids were outraged that someone did that to me...so that shows caring. In addition, they don't use the r-word anymore because I talked to them about it. If it happens to slip out, they point it out to one another and apologize.

I guess I have to learn that all I can really impact is my own little world - that is if someone doesn't come in and let others take and misuse my stuff.

Tomorrow is another day. Counting down the days until vacation.

I read the book A Fraction of the Whole by Steve Toltz for my book group discussion tonight. Martin, one of the main characters in the book, says there are four types of people in the world: those obsessed with love, those who have it, those who laugh at r-word people (great language, huh) when they are children, and those who laugh at them into adulthood and old age. When I read this originally, I was outraged, what does laughing at those with a cognitive disability have anything to do with types of people? But now I get it, it is all about character and integrity. Actually Martin is missing a category...those who stand by and allow others to laugh at those with a cognitive disability and DO ABSOLUTELY NOTHING - to me, they are the worst. And today, what pains me most is that I "had" to be one of those people during that crappy observation.

-Karyn

Thank You

"The right to play on any playing field?
You have earned it.
The right to study in any school?
You have earned it.
The right to hold a job?
You have earned it.
The right to be anybody's neighbor?
You have earned it."

-Eunice Kennedy Shriver

I have been meaning to post on this, and just haven't yet. I have thought about it a lot.

But now it is time.

I want to thank you Eunice Kennedy Shriver for all you have done for my daughter. You never met her, but your work has undoubtedly helped enrich her life. Whenever I think about how you dedicated your life's work to making the world a better place for individuals with cognitive disabilities, tears of appreciation well up in my eyes.

God Bless you in heaven, because you certainly deserve being there. Your family is in my thoughts and prayers at this difficult time.

You are an inspiration to us all. A person will be made a better person by knowing and loving someone who has a cognitive disability.





For a great tribute to Mrs. Shriver, go to this site.

-Karyn