My Baby Girl

My baby girl isn't a baby anymore and I regretfully admit that we have been treating her as such. We slipped into that because she doesn't do the same things as a typical three-year-old. She is behind her peers with DS too. It is what it is when it comes to her development (I accept that), but we slipped into not thinking about her as growing up. And for that I feel guilty. There is no reason she should be in a crib or a high chair anymore. Even in this photo you can tell she doesn't look like a baby, but we have been treating her as such. Time for some changes....

-Karyn

Depraved Indifference

I have been away from the blog for a while. Too long. I had a hard semester in a lot of ways - teaching too many classes, taking on a lot (too much), and worried about the status of my full time job. I became just so burned out. But now I am feeling a renewal. Well sort of. I started working on some advocacy again about my full time job and issues there. I am starting to get my spirit back. I keep going back to that if the kids there were my kids, I would want someone to stand up and speak out to allow them to continue to receive the services they have been.

This clip, although it has been around a while, really speaks to me. The statement of "I suffer from depraved indifference" really fits me given that I have done little for social justice the last few months. When we hear about things, we tend to not let things affect us. That has been going on with me and I feel shame about it. I look around at my work and see so many people leaving and moving on because they don't know what will happen. I can't do that. I need to speak out. So it is time to get going on some things again. "Heroes are made because they are moved - not in their head, but in their heart." I am thankful for all the heroes that were moved when it came to disability rights. My beautiful daughter will benefit from their caring about her and others like her. I have to be moved about things too. May 2011 be a year that more of us become moved.



-Karyn

Just the Way You Are

I love you Quinn, just the way you are!



-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

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

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

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

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

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

Family Photos

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

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