Well Quinn was really celebrating last night. We went to Dave and Buster's and then home to watch movies. She decided this was the time to torment Belvedere, our beagle. I have never seen her so motivated and strong, trying to get to him and be by him despite Belvedere's lack of reciprocal interest in this interaction. It took both Riley and myself to play defense against her with Belvedere on my lap. Riley got his glasses ripped of and the brunt of Quinn's force. How in the world has Quinny gotten so strong? Gee - it is like she is a superhero or something. One with more flexibility than any other (she can do splits over the enemy). One that is obsessed with beagle dogs and being by them. Don't let her fool you with her cuteness. She is one tough cookie. Happy New Year everyone!
2011 was a rough year in many respects, but thankfully not in the way of Quinn. She really grew and developed this year. Her latest thing is talking nonstop (sometimes words you can recognize and sometimes not) and playing with toys. May seem like little things to some, but it is huge to us. She says "bye ma" when I go out and about to work. To me, that is music to my ears. Last night she was looking at a book sitting RIGHT NEXT TO NEAL (0% space in between), with her socks off, and her legs crossed. She is just so cute. I am so thankful that 2011 was a good year for her. Every day I think about how lucky we are as a family to have Quinn in our lives. She is just beautiful. I hope 2012 is another great year for her.
For me, I hope that 2012 is less stressful. I am making it my goal to work on stress management. I also hope to post more next year - 2011 stunk on that front, primarily because of time management with everything going on. But writing helps me, so I have to try to start out strong next year.
This is just my thoughts...my opinions...this is in no way meant to translate to others...we are all on a journey...an individual journey and this is where I am right here and now...
In Jonathan Mooney's book The Short Bus he interviews a mother of a young woman with DS (Katie). I love this book. It opened to my eyes to that disability is another area of diversity. This is a point that I needed to look at because it challenged my values. Anyway, Katie's mom stated, "Katie revealed my dark side. She was a little crack of light that go in there and revealed my dark side. It is a dark side that most of us have." I had a dark side. I am not ashamed to say that. Quinn revealed it. She continues to reveal it.
What I hope beyond anything is that my children do something great in this world. I used to believe it had to do with what they achieve. I have a Ph.D. I was a gifted student. I had a 4.0 all through college - undergraduate and graduate. It is all about achievement in my life. Achievement, achievement, achievement.... Now I know that achievement isn't everything. Quinn, just at three years old, has shown more purpose and impact on others than I ever have and I work in a helping profession. What is worth anyway? Jonathan Mooney examined this for himself in the Short Bus. I examine it through Quinn. Right now I realize that Quinn has more worth than me. I don't care about what society values, I care about what I value in my heart. Society didn't value various races in the past. They were wrong. Maybe there will be a new way of looking at cognitive disabilities in the future - who knows. I can hope, can't I? Quinn has the DSM-IV-TR diagnosis of Mental Retardation. So be it. I say that now fully recognizing that I still struggle with this periodically. I am on a journey. But right now I feel in my heart that one's IQ does not determine their value. I give IQ tests for a living, they are just a number. What you leave behind on this earth is what matters and Quinn will touch so many people. She will leave behind a legacy that surpasses my legacy. That is truly achievement. She will be proud. That is what it is about. I know this because I see how she already touched her brothers.
This is something I posted on an online forum. The question was about if you see DS as a blessing.
To me, DS is not the worrisome thing with Quinn. I would welcome only DS, but this is not to say that someone else might not have a totally different view. She had seizures which set back her development and were much more scary to me. Although we are moving forward now, I know that these seizures have impacted her. I hate Infantile Spasms, but I don't hate DS. I love Quinn and if she has that extra chromosome in every cell of her body, so be it. But I cannot stand for seizures running through her brain. This is why it gets confusing...Quinn was at a higher risk to get Infantile Spasms because of DS. But then DS helped her treatment for Infantile Spasms become more effective. So many kids who are typical who have Infantile Spasms do not get their seizures under control. It is just so sad to hear what these kids and their parents have to go through. DS was our friend here. It helped her so much and her neurologist would talk about DS in a positive manner for her. Jeez, how is someone supposed to feel about all this? It is confusing. It put her at-risk, but then saved her. But today I went to church and I am not going to get preachy but I so understood the sermon because of all this. The sermon was about grace - sometimes grace comes in ways that aren't exactly what we wanted or expected. To me, if Quinn had to have Infantile Spasms, I am just thankful she had DS. Maybe the DS was a blessing to us. Who knows?
I have decided that everyone needs to be like Quinn. Well, not exactly like her (we do need diversity), but like her in the following way...You tell her no. Maybe she is patting the dog a little too hard. Or maybe she is pounding her toy against the window. No matter, the point is you tell her no. She stops what she is doing. And in return to this redirection which may anger some, what does my girl do, she comes to you and gives you a big hug and the sweetest kiss. My girl is perfect. Everyone else, including me, has the disability.
This summer we went on a weekend trip to Door County. Neal and I were reminiscing during the trip that the last time we were in Door County was when I was pregnant with Riley. So we were talking with the kids that the only one of them that were there before was Riley and he was in mommy in the time. To which, Aidan turns to Riley and says, "Did you see me in there when you were in there?" That guy cracks me up.
I would like to get a photo of all three kids together, but this is what has been happening...Quinn takes off, Aidan gets annoyed, and Riley, well he is by far the most cooperative of the bunch. Memories...
Yes, I know it has been a while since I posted. It has been much too long. I have experienced a big adjustment period in my life this summer. I started my new job in April and then this summer I had to take vacation time at that job to work my other part-time jobs. A very long story and not the best summer of my life. But step by step things are getting better. Maybe now I can get back to blogging. At least for now. I really hope.
I was having a conversation with Aidan about the things Quinn can and cannot do. He asked about when she will be able to ride that tricycle in the garage. I said to him, "What is the rush?" Then at the meet and greet tonight at Riley's and Aidan's elementary school, one teacher asks me when Quinn will start Kindergarten and I say "Not for a while, what is the rush?"
That is my new mantra...WHAT IS THE RUSH?
People (including me) often push to do things quicker and faster and now I am wondering why does that matter? Really, what is the rush? Why can't we take a hint from DBT and be mindful and appreciative of the moment, whether it be good or not so good.
Why should I rush my daughter? She is my baby girl after all, my last born. She will hit developmental milestones whenever she is ready. I don't need to rush. I am going to be 40 this year. Turning 40 isn't bothering me, but it does make me realize I don't need to rush my little girl. I should just watch in wonder that the most beautiful girl came from me.
This also translates to other areas of my life. If I am still grieving the loss of my old job working with kids that I loved working with, what is the rush to move away from that grief? I was there 13 years after all and I was great at my job. It is ok to grieve that loss as long as I am functioning and doing what I need to in terms of my new job. I am not going to rush off of that.
If I want validation in a relationship in my life, what is the rush getting over it? Why can't I just work through my feelings at my pace?
Just why do we rush through life so much anyway? Are we rushing to something? Or away from something?
I am reminding myself it is ok not to rush. Even this adjustment this summer teaches me something. I shouldn't rush, I should try to figure out the meaning of this for me.
They told me that my girl had Down syndrome. I cried. They told me that my girl had Infantile spasms. I cried. They told me that my girl had Autism. Actually I think that was a lie, but I still cried. Now I see all that my girl has accomplished. Now I see my girl loving life. Now I see my girl strutting her stuff. Now I see my girl making jokes and chuckling like things are so funny. Now I see my girl running to the door to greet me when I come home. She has a huge smile on her face. All those tears just made me love her all the more.
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.
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....
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.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.