Special People Parenting Special Kids

I am SURE you are saying are you kidding me with the Miss USA Pageant as a TiVo alert! I however think all of you with little girls may be very happy to have your daughter see MissIA Miss USA TiVo® Alert   The Miss USA Pageant Iowa – Abbey Nicole Curran.  She’s a beautiful, talented, intelligent, self-possessed, young lady who is competing for the Miss USA title tonight. Why am I so interested in Miss Iowa when I am a Georgia resident and  Jersey born well because Miss Iowa has cerebral palsy.Ms. Curran says she wants the judges to know that she is living her dream competing in the Miss USA pageant. She says she also feels she’s not doing it just for herself however but for all people with disabilities hopefully teaching others it’s ok to take risks and that you never know until you try.It’s being carried on NBC tonight so check your local listings. GO ABBEY! 

Emily Perl Kingsley and her Prize

Apr 10, 2008 Author: Kyron | Filed under: Articles, General

Many of you have read Welcome to Holland by Emily Perl Kingsley. It’s a poem that was shared with me very early on in my journey as the parent of Katherine. I felt likeemily jason Emily Perl Kingsley and her Prize it gave me the ability to say “exactly“! Someone actually understood!!That is why I thought this piece was so much fun – it was sent to me by Johanna. It is on a site about vanity license plates – Ms. Kingsley’s is raflpriz. I think it was a great little article about her car, vanity license plate, and her wonderful son. Please check it out by clicking here.

A ‘Noble’ idea

Apr 10, 2008 Author: Kyron | Filed under: General, News

I was pointed to Pamela Wilson’s post at Bella Online. In this post on the passing of Melissa Riggio (daughter of Barnes and Noble CEO Steve Riggio) I mention this because I was moved by the idea and I think some of you might be interested in participating in the tribute as well…

Some family and affiliate groups are contacting their local Barnes and Noble stores to request space for a display of sympathy cards and notes in gratitude and sympathy for Melissa Riggio, daughter and sister in the family of the Barnes & Nobel CEO, Steve Riggio.  

 The article at Bella Online has links to other articles and the local obituaries for those who may want to express their condolences online. 

   

In Memoriam…

Apr 9, 2008 Author: Kyron | Filed under: News

melissa In Memoriam...

On March 29th I shared an article that was published in National Geographic Kids site. It was about this remarkable young woman Melissa who wrote about being a normal teen who happened to have an extra chromosome. I thought it was a remarkable testament not only to what a remarkable young woman she was – but to her parents as well. What I didn’t know at the time I shared it was that this beautiful soul was in the middle of a fight for her life.  A fight against leukemia which she lost on Monday morning.

Melissa Gaffney’s blog post from Monday was sent to me and I wanted to share this news with all of you who were no doubt touched by Melissa Riggio. The world is a better place for having her here if only for those short 20 years. Please visit Ms. Gaffney’s blog to see the entire post on her passing.

For today, we light a candle

Apr 8, 2008 Author: Kyron | Filed under: Strategies

Well today we had to sit down and tell Katherine that Auntie’s illness was more than jushope For today, we light a candlet jaundice. The word cancer in our family understandably has the most serious of connotations. Katherine is named for two people who died of cancer. Auntie was best friends with these two extraordinary ladies. One of those ladies was my mother. Both had cancer that was found too late, was incredibly aggressive and left so very many of us who loved them with far too little time to say goodbye.

As per the instructions from Katherine’s therapist we’re giving her information in bite sized doses. First we allowed her to deal with the fact that Auntie is sick – she is sick and the jaundice was a very obvious symptom. Auntie looks yellow. Her color is jarring, immediately noticeable and gave Katherine a very real sign to focus on. It seemed to me that it was the best one to focus on – the weight loss, the lack of energy – those were scary to me so if I had her focusing on them it was going to make me go nuts and would not allow me to help her cope to the best of my ability.

Today we tackled the “C” word. At the instruction of the therapist, while we have given her the next piece of information we have not removed hope from the process. As we explained it to Katherine, Auntie has cancer. Cancer is serious, but the doctors and nurses are working very hard to help Auntie to get better. Katherine asked about what they are doing. Katherine asked if Auntie hurts, if Auntie was sad, if Auntie is going to have to get needles. All reasonable questions – you’ll most likely note that even with her knowledge of cancer, the one question she didn’t ask was the one I was afraid of. I am guessing that it’s only a matter of time before she asks if Auntie will die, she didn’t right away so maybe it didn’t occur to her, maybe it’s just not something she is ready to process at this point. 

I guess that was smart advice I was given. As adults we tend to go from A-Z very quickly, especially when you hear someone you love has a very serious illness. As adults we are more attuned to eventualities and more frequently need to analyze the what ifs and whens. We – ok I won’t speak for you – but I easily forgot that a certain amount of information is plenty for kids. So breaking it into pieces works. The biggest thing to keep in mind is DO NOT LIE. If/When Katherine asks if Auntie is going to die the answer won’t be no because that’s a lie – everyone dies. The reality is that Auntie is so sick that she may die from this. There’s no reason to bludgeon her with prognosis, time frame etc. Especially since it’s not information she really needs to deal with things. 


Keeping hope alive is important I think. And not just for Katherine.

Love across the miles

Apr 7, 2008 Author: Kyron | Filed under: Depression, Mental Health

It’s been an eternity it seems since I was able to write here. On incredibly short notice we packed the family up and drove to New Jersey from Georgia. It’s a 900+ mile trip and a bit over 16 hours in a car. Tons of fun with a toddler and a special needs child. Ok so maybe not. It was only made more difficult because of everyone was nervous about how Joan was going to be when we got there. Joan has been like a mother to me for longer than my daughter has been alive. Joan has been the grandmother on my side of the family to Katherine. Joan’s children, extended family and friends have all “adopted” me as Joan’s 5th child. 

Joan is ill, how ill is to be determined although nothing suggests that long term it will be good. How to address this with Katherine has been a discussion with extraordinary emotion over the past week. Not only am I worrying how to deal with making this easier on Katherine but I am worrying about making sure that my own personal emotions are not too overwhelming for Katherine. Losing someone you love is never easy. Learning how to lose someone you love is something we all eventually need to cope with. So not only do we have an journey to New Jersey but a journey through love and loss as well.

Of course I’ve looked things up online, and I’ve had a conversation with her treating doctors as well. Actually much of the information they gave me was intuitive to me for the most part. Mostly, what the doctors reminded me was that I didn’t need to put the cart in front of the horse. Just like life has a progression we can dose the information out little by little without clobbering her with all of it at once. Some of the information she’ll ask for as she needs it, other of it we can present in bite size pieces so that she has time to digest it.

None of us knows how much time we have left on this earth, nor do we know how much time the ones we love have. I know that it’s times like this that remind me of how important it is that we make the time to say I love you and to show it as often as possible. Taking time to drive to New Jersey through the rest of life into turmoil – for everyone and everything. Honestly though, I’d do it again in a heartbeat. In most ways it was anlovemail Love across the miles incredibly selfish trip – I needed to go see my mother. I just hope that through words spoken and unspoken she knows how much we all love her. I hope that Katherine remembers how important it is to not just say I love you but show it by your actions. I hope that the example set helps her learn that lesson well.

I appreciate the emails I’ve gotten from many of you inquiring about my absence. I am sorry it took so long to respond to you. Your kindness was appreciated. Hopefully I’ll be around for a bit now. I know that you all understand the delicate balance that already exists in being a special parent and additional things can really throw things completely out of whack. Well, we’re whacked but back. Hopefully you’ll take today to tell someone you love you’re thinking of them.

Katherine and I are making cards (coloring pictures and putting “love, Katherine” at the bottom) for some people she loves as tomorrow’s project. Like driving 900 miles via the US Postal Service. Or an email from someone you’ve never met but worries about you anyway.

TiVo® Alert Autism Every Day on Sundance Channel

Mar 31, 2008 Author: Kyron | Filed under: Autism, Television

Autism Every Day on Sundance Channel:

The Sundance Channel will present the U.S. television premiere of Lauren Thierry’s documentary Autism Every Day on Wednesday, April 2 at 8 p.m. ET (which is World Autism Awareness Day). The film documents the day in the lives of eight families struggling to raise children with autism.

I hope that many people take the opportunity to see this

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