Sunday, October 24, 2010

Happiness and Sadness



My baby girl turned three on Wednesday. Her development has been just taking off. Two weeks ago she started saying Mama, dog and all done (all done is a little joke she says a lot, when she isn't all done she says it and then smiles when we tell her she isn't all done). She has been coming up to her brothers so much more that her brother Aidan now complains that she is getting into his toys too much - ha ha. She makes more eye contact and will thread her fingers through yours. I feel like things are better and she is just so beautiful (see her three year old photos) and then on Thursday we received the results of the neuropsychological eval that claims she has autism. I say claims because the two times I witnessed Quinn crawl right up to the neuropsychologist are not mentioned in the eval. Down syndrome is referred to as Down's Syndrome throughout the eval. And I was the one who had to tell them about George Capone, who we are now going to try to see when my life calms down enough for me to pursue that. All the neuropsychologist did after I told her about George Capone is look his photo up on the web (she actually admitted that to me). Maybe I am just not accepting the inevitable, but I don't understand this. The neuropsychologist told us TWICE that she knew how we felt. The last time she said it I basically went off on her that, as a helping professional myself, I can tell her that statements like that do not help. Now I have to contact her again to tell her that I want an addendum to the report mentioning that Down's Syndrome should be Down syndrome and mentioning the crawling up to her, and correct another error in the report. There is always something... But I do have my beautiful girl and it is so great that she is more interactive. I can't believe she is becoming more interactive just now when we receive such a diagnosis. Maybe someday I will write Autistic Disorder on the side of this blog, but for right now, I cannot stomach it.

-Karyn

Monday, September 20, 2010

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

Friday, August 27, 2010

Another One

Another insurance company said they would not insure Quinn and they know nothing more than that she has Down syndrome. Unbelievable. I just hope to God my job doesn't close or I am in deep trouble.

-Karyn

Discrimination

It is quite something to look into the face of discrimination and realize that it is pointed squarely at your daughter, your love, your one and only little girl who lights up your life.

We are investigating what it would involve to take on our own health insurance in case their are changes in the future.

What we found out thus far is pitiful and shameful. Our current carrier would insure us all - minus Quinn - at a huge price. But because of changes in the law, we are lucky that in a few weeks they will begrudgedly insure our daughter at an even higher rate. Oh that is reform. AND all this is even before they know the details about her previous bill for a medication for $120,000 for the treatment of infantile spasms, so can we anticipate that the price would increase even more. It isn't much better with the other companies we looked at - and you want to bet when they see the medical concerns she has had, the price will only go up.

And I personally don't understand this health care reform because I have been to busy dealing with possible closure of my main job, Down syndrome, seizures, stereotypic movement disorder, and now a looming evaluation for pervasive developmental disorder. Plus a million and one other things.

Neal posed this question, "Well what did these insurance companies think would happen to Quinn when she became an adult, didn't they think she should be insured?" I responded, "Don't you know the answer is no. They think she should have inadequate health care because they expect she will die at an early age." It is nice to know people have such optimism for your child - the sarcasm is dripping from my finger tips.

-Karyn

Empathy

The other day Aidan was having a crying fit about something that is now inconsequential. The cutest thing then happened, Quinn looked over at him and did a frownie face. At first I thought it was empathy, she was feeling for her big brother and everything - but maybe it was because his crying was bothering her. :>)

-Karyn

Wednesday, August 25, 2010

Local People

HERE may be something of interest if you want to sign it. No pressure.

-Karyn

The Lifeguard

I studied psychopathology in graduate school. Now I teach the course and regularly look to my DSM-IV-TR as I complete psychological evaluations for my private practice. I will be completely honest with myself and say that one diagnosis that I never really thought much about pre-Quinn's own diagnosis with it was 307.3 Stereotypic Movement Disorder. Now I just can't look at certain things the same way. Every time I page through my DSM I stop for a moment and look at that page. That never happened before. And then there was yesterday when I saw a lifeguard at an indoor water park that we were staying at. I know that this lifeguard in all likelihood does not have a diagnosis of Stereotypic Movement Disorder, but I couldn't help but to think of this disorder as I watched her stretch her neck back and forth in the same way that Quinn does when she is doing these movements. No other lifeguard did it quite the way she did it and it looked just like Quinn stuck in her movements. Back and forth. Stretching the neck from side to side. Over and over again. Now the lifeguard was trying to look by the side of the pool and make sure no one was needing assistance, but my daughter does these things not for a job, not for any purpose really except to perhaps stimulate herself. Some days she does this a lot, other days not so much. But I will never look at certain things the same way. I now notice things that other people do not. I think Neal and I were the only two people in that huge waterpark that looked at that lifeguard that way, thinking of our daughter. Stereotypic Movement Disorder is just one thing that has changed my life.

-Karyn

Friday, August 13, 2010

Standing by the Window

When I drove up to our house last night after my typical 12 hour workday, I noticed something, or rather somebody standing by our window and looking out over the neighborhood. And this little person was not so little anymore. Miss Quinny was standing there watching the cars and people walk by and, more importantly, waiting for her mother to get the heck back home. If it wasn't for that pesky desire of wanting to avoid an accident, there would have been no way I would have turned away from watching her watching me and standing by the window. I parked the car and then like a stalker walked to the front of my house to watch her some more. I don't know why, but it just warmed my heart so much seeing her stand there watching over her universe.

-Karyn

Tuesday, August 10, 2010

Family Photos



Monday, August 2, 2010

Happy Birthday Aidie

My baby boy is turning six today. I remember his birth just like yesterday. It had all the drama consistent with Aidie - ha ha. I was watching him sleep this morning thinking where did my baby go? Here is a photo signifying just how grown up he has gotten (ha ha). Happy birthday my sweet.



-Karyn

Sunday, August 1, 2010

The Couch Potato

It may seem like a small thing to some, but WAY COOL is that Quinn climbs up on the couch or recliner and likes to sit back and relax. I don't know why, but that makes me feel WAY GOOD!

By the way, I would like to make a formal announcement to the world that she is NOT walking on her own yet and please REFRAIN from asking me this repeatedly. I don't know how many times I have to have the talk with people that it is best to ask a vague question like, "Is Quinn doing anything new?" versus specific skills like that and then looking shocked when you have to answer in the negative.

-Karyn

Saturday, July 3, 2010

Helmut Hair & Others

I have been neglecting my blog. My last post tells you why. Anyway, I wanted to share these photos of our vacation that we went on in June. Quinn and the boys are getting so big.






-Karyn

Friday, July 2, 2010

Advocacy

I don't tend to talk about my work, but here it goes...

I feel honored to be able to work within the field of juvenile corrections. I truly love my profession and the population I work with. If you would have told me when I was younger that this would be the population that I would be destined to work with, I would have never ever believed you. Now after doing this line of work for almost 13 years, I simply cannot imagine ever wanting to work with any other population or in any other institution. I am just one of many people who feel this way, and I work at Ethan Allen School. Ethan Allen School (EAS) is an institution that is in jeopardy of closing all because of politics. Facts like diversity of staff, close proximity to the homes of youth, the value of face-to-face visits, and access to mental health services have all been discounted by the Administrator of the Division of Juvenile Corrections and the Juvenile Corrections Review Committee. I hope that the Governor doesn’t discount these same things, but I am unsure about this given that he appointed these individuals to their positions. I just cannot believe that we have come to the place of actually talking about closing EAS and moving all the youth to an institution a much farther distance away from their homes and the communities where the vast majority of the youth come from.

This morning I walked to one of the cottages on my way to see one of my kids. I do consider the youth placed at EAS my kids. Not the same as my children at home, but the youth at EAS are in my care during their time with us, and I take this all very seriously. They all made bad choices in order to come to EAS, but they are still boys and young men who are very capable of changing. I have spent the last 13 years studying what it takes to change, talking to the youth at EAS about this concept, hearing about their lives, and helping them through unbelievable difficulties. I have experienced tears, loss, anger, guilt, pain, happiness, and laughter. I walk to the cottage thinking about how much I actually love this place. I know it is hard to imagine loving a correctional institution, but this institution is filled full of almost 13 years of memories, people that I loved working with – both youth and staff. I walk by Draper Hall and remember so many kids I worked with over the years, there are so many that I remember what their face looks like or the sound of their voice yelling hello to me through their window. I love working with every one of them. Some are thankfully successful adults in the community. Some were lost to the streets and maybe prison. Some had a slip up as an adult and then turned themselves around. And some are now deceased, but I loved working with every single one – even the challenging ones. It was an honor, not only did I teach them, but they taught me. They made me a better person. I give it my all with every single kid to help them consider change in their lives, but I recognize that they ultimately have the power to decide their destiny. That is the way it should be.

I arrive at the cottage to talk to my youth. Every time I talk to one of my youth I just know that I am in the right line of work. I feel this is the place I am meant to be. There is nothing like seeing the look in their eyes and the turn of their heads when I ask a question that challenges them. I can see it clearly over and over – this is the population that I am meant to serve. They also know they can rely on me when they are at EAS. I will always have their best interests in mind even if they don’t agree with my response. I have a gift in creating a strong therapeutic relationship with these youth. They see I care, but they also know that I will challenge them to think about things they never considered before. I recognize that I use more challenge with the youth I work with now than ever before, and they surprisingly take it well – they want to know what I think. I do not lie to them. They know that I will do what I say I will do. They know that they are safe.

Later in the day I am honored to see the family of one of my kids. So many people make assumptions about the families of the kids I work with. I can’t read postings online anymore without anger at some of these assumptions. Not all families of kids placed in corrections are one way. There are a multitude of stories. There are, however, times when unfortunately some of these assumptions are true, but this is not always the case. People from the outside who don’t know these kids often don’t have any idea of what really exists. They see these kids as “monsters” and criminals and their families as permissive or absent. Why not place them far away, they say. They really have no empathy for this population. But I know otherwise. The family of my kid is stable, loving, sets limits and boundaries, and is highly involved in their child’s life at EAS. I witness a powerful interaction. I see tears. I see hugs. The kid hears about how his previous behavior in the community impacted his family. I ask him to turn and look at his family and see their reaction to him coming home and to forever remember this moment. I see it in his eyes that he is taking in what I am saying to him. Looking back now as I type this, I see very clearly that all of this would not have been possible if EAS was closed. His family would probably have not come to the review which would have been a substantial distance away. If they were present via teleconferencing (an option discussed by the administrator and the committee) this interaction would not have been as powerful. I have studied people who change and recognize that defining moments like these can have a lasting impact. This kid, who has great potential, may be lost to the system or the streets without this moment. I am so thankful that we had this moment because there may be countless people impacted if we did not.

I remember the families over the years that I have worked with, one after another. I remember the honor of helping them through difficult moments and losses, seeing them become closer, witnessing vulnerable moments, and looking at the kids’ faces when they see their family walk up to our building for a meeting. I remember the pride of kids I worked with being able to introduce me to their families at visits or graduation. I remember the young men with children who wanted me to hold their son or daughter. I remember the joy of surprise visits on their birthday or some other occasion. How happy the youth were that there family was able to make it out to EAS last minute for this occasion.

I think about all the Serious Juvenile Offenders (SJOs) that I have worked with, one after another. They have a special place in my heart because this is the population that I have worked with the most over the years. There offenses tend to be the most serious and many would discount their ability to change, but I know they have potential if they choose to do something different with their lives. I simply know if institutions such of ours did not exist in the State of Wisconsin, one after another SJO would be waived into adult court. The advocates trying to get rid of all juvenile correctional institutions and move to the Missouri Model do not have any idea what they will be doing to this population. I think of so many SJOs who have had such potential – that this might have been their first offense, but it is serious enough that they have to come to corrections. I feel sad knowing that they may be lost to the adult system where they have less likelihood of receiving treatment and more likelihood of being drawn into additional negative activity and experiencing violence and assault.

I cannot believe that people are actually discussing closing EAS. I tried to have my voice heard in this process, but I feel that those who are “driving” this moment don’t want to hear from people like me. They discount the years and years of knowledge that I and others have on this subject. They want to portray our institution as a place where the staff just can’t get along and where the kids are unsafe. They are discounting any evidence that is to the contrary. They don’t want to see any good at EAS. They don’t want to see that there is support amongst staff. Maybe it isn’t 100%, but you tell me what work environment has 100% of the people getting along. If another correctional institution seems like 100% of the people get along, I would be very suspicious of this portrayal. My daughter’s two Godmothers have worked at Ethan Allen School, so this alone tells you what support there is amongst the staff. I admire so many of the staff. I know a youth counselor who the kids just respect, a man who can reach the kids who have an absent father like no other person can. They see hope for their future in him, as he comes from the same city as many of them do. He always treats everyone in the institution so fair and kind. I know a teacher that the kids just adore. One after another tells me know they would not have been able to get their HSED without him. He is a team player, and he always helps me out whenever I have a need or a question. I know a social worker who advocates for her kids’ needs. The kids respect what she has to say even if it isn’t exactly what they wanted to hear. She regularly reaches out to staff in need. She has even comforted me in my most difficult personal moments. I know a nurse who consistently follows through and communicates about the needs of the kids. He always has a smile on his face when I see him. I know a superintendent who cares about our opinion. No matter who you are, youth or staff, he treats you with respect. I walk around the institution thinking how is it possible that they portrayed us like this? What is the true agenda here? The above is just a sampling of the staff – there are so many others who I have been honored to work with. I could go on and on.

Ultimately, what I worry about are the kids, my kids. Since this horrible series of highly political events have commenced, I have advocated for them. I will continue to advocate for them. This is why I am telling my story even if it doesn’t change things. I just feel my voice needs to be heard. I am not speaking out for me. I am speaking out for them. I cannot see any justification to moving the vast majority of the kids, my kids, far from home to a county that demographically is so different than their own. This just isn’t right. I just hope that those in power to make these decisions will not close EAS for the kids who have been entrusted in my care. If you are from my state, please call the Governor and speak out about this (608) 266-1212.

-Karyn

Tuesday, June 15, 2010

Reality Bites

One thing after another, so it seems.

I am trying to enjoy a vacation at the moment when my job (AKA my passion and life's work) is in the balance and depending on all things, politicians. Risky to say the least.

Kind of reminds me of a vacation three years ago when Quinn was in my belly, a diagnosis of DS was on my mind, and my husband's loss of his job was in my heart.

But we adjusted.

Then a new diagnosis of a seizure disorder came along.

Then we adjusted and completed a $120,000 treatment.

Then yet another new diagnosis came along (Stereotypic Movement Disorder).

But we adjusted yet again.

And now waitng for this decision and questions about what will happen....

I had the dream of going into private practice if my work closes. That way I could work with a smilar population, but then reality came here back to me....

Insurance...

Quinn's medical needs...

Oh things are complicated, aren't they?

But as always, we will adjust. I am just feeling trapped between a rock and a hard place at the moment.

-Karyn

Sunday, June 6, 2010

Wisconsin Natives-Please Help

If you are from Wisconsin, please help get the word out - Out of 437 youth in the Department of Juvenile Corrections, 325 are from the southern counties. That is a huge percentage of youth, families, and county workers to be inconvenienced by moving the location. Please write your governor, state senator, and state representative.

http://www.google.com/hostednews/ap/article/ALeqM5hSdbz67zNVY31vVu-FE-HzRP4n4gD9G5UQGO0