JacksLists.org

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Posted by Kyron | Posted in Diagnoses, Inspiriation, Strategies | Posted on 18-04-2008

I found thWhite Caneis blog because the mom, Nancy found me. What a blessing that was!! Nancy is mom to Jack. Jack is a child who has a visual impairment which leaves him legally blind. I’m sharing with you an comment I left on one of her blog posts because I felt the post was that powerful!

Wow! Thank you so much for this honest accounting of what’s truly a very real part of being a parent to our special kids! The reality is we all want to minimize the stigma any of our kids get subjected to whatever their disability. Not wanting your son to use a cane is just a tangible symbol to what we all are worried about – our kids being treated the way everyone else is.

I’ve added you to my blog because I think parents will do well to read another parents’ very honest perspective on parenting a child with special needs. Thanks for being so willing to share with such candor and honesty what so many of us go through but might otherwise be afraid to say.

Please do us all a favor and go visit Nancy’s website and this particularly great post by clicking here.

An open letter to Ms. Curran…

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Posted by Kyron | Posted in General, Inspiriation | Posted on 17-04-2008

Miss Iowa - Abbey Nicole CurranThis is an email I recently sent to Ms. Curran. If you are interested in contacting her yourself (as some of you who contacted me were) you can click here to send her a message. I am sure that she’ll be happy for any messages of support and thanks we send!

Dear Ms. Curran,

I wanted to contact you personally. I wrote about you briefly on my blog – The Special Parent where I talk about being a parent of a special needs child. My daughter is 16 and has multiple disabilities. She recently wanted to understand a bit about pageants because she had been offered an opportunity to participate in Miss Special Teen for our county here in Georgia. Imagine my delight to run into articles about your participation in the Miss USA program. I put it out there on the blog because I was certain other parents of special needs girls (in particular) might be interested in knowing about your inspirational story.

Thank you for representing yourself, your state, and my daughter and thousands of other girls around the country with such beauty, grace and dignity. Thank you also for giving my daughter a wonderful role model for her to emulate. You are someone she can relate to and aspire to be like. I hope you know what a wonderful, powerful and positive impact you are having for so many young woman.

Very Truly Yours,
Kyron Arambula
mother of Katherine McCoy

If you want to see other great pieces on Abbey Curran check out the 2 page spread in People Magazine by clicking here.

You can also view video of Abbey Nicole Curran on the Ellen deGeneres show by clicking here. 

One Dose of Tough Love

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Posted by Kyron | Posted in General, Strategies | Posted on 16-04-2008

The past few weeks I’ve been engaging in the task of reviewing several different classes in an effort to find an appropriate high school placement for Katherine. Certainly not the first time I have had to go view multiple classroom settings. Katherine’s placements have had to change more often than I care to even think about. Of course up until now most of those changes were driven by me and Katherine’s father rather than her reaching an age necessitating a move. The last time age necessitated a move to a new school we set off a cataclysmic chain of events that lasted the better part of 3 years which I am fine with never repeating again in Katherine’s lifetime….or mine!

As those of you who follow this blog know, Katherine has incredible difficulty with transition. So why I thought transitioning to a new school and teacher would be anyschool bus different? Beats me but I guess I didn’t give it enough thought last time. Needless to say the psychotic break it caused has left me with an indelible reminder of what happens when I don’t remember and don’t plan for her needs in a transition scenario. It’s also why we kept Katherine for one extra year in the middle school although some have been all too willing to tell me what a mistake that was. So it was with no small amount of trepidation that I started looking at choices for Katherine’s new class next year in High School.

Together with her therapist and psychiatrist we came up with a concept to put together a transition that would allow her to spend some time – at first 1 day a week in the High School while remaining a student in middle school. This way she’s getting an opportunity to adjust to the new setting with the safety net of middle school safely underneath her.

The first choice was to move her into a similarly classified classroom. While on the face of things it would sound pretty ideal, the reality was so very different than anything I had in my head. I was very thankful that I could see the setting in advance. Had we just transitioned Katherine into that setting I can guarantee we’d be back in that roller coaster ride of hospitalizations again. Teachers seem good, children in the class were impressive. However Katherine would flounder in that setting. It was a total mismatch, a disaster waiting to happen.

The second choice was to take her into a class of children who were not as high functioning and not expected to function at the same level of independence as the first one. The teacher seemed great – very kind and nurturing and loving. The children were sweet, very obviously connected as a class – they rooted each other on in their various classes… impossible not to smile and root for them as well. Too bad that the teacher is leaving that classroom, the parapro is retiring and the classroom may move it’s physical location. So I saw yet another classroom in a different school praying it would be what we needed.

I entered the classroom to see probably 10 children sitting appropriately at their desks working on some worksheets. The teacher came over and introduced herself and for the next half hour while we watched the children working on their independent work with a parapro and several students from mainstream classes who were doing a workstudy in the classroom assisting. The teacher told me of her philosophy, things I could expect if Katherine were a part of the classroom, her qualifications as a teacher and allowed me to ask numerous questions. I also carefully observed her interactions with the students.

Ok, this mom is willing to admit that at first I was a bit overwhelmed by this teacher. I know I have been accused on more than one occasion of being a pretty assertive personality. This teacher made me look meek and mild and yet she was strangely compelling. Whatever it was I was picking up on was obviously working for these kids though. Regardless of the in your face nature of this teacher it was abundantly clear to me that she loved these children and that the feeling was mutual!

The teacher willingly admits she employs a “toughlove” approach with these children. She’s tough on them and unapologetic about it. Not unreasonably so, not the kind of tough that expects they are going onto college and careers as doctors, lawyers and teacher but tough that recognizes that each one of them has strengths that they should be encouraged to achieve the maximum their potential provides for. I felt like she was telling me this for two reasons. One because she feels that this approach maximizes each of her students potential for independence by the time they graduate. Second because I think she realizes her approach isn’t for everyone and wants to make good and sure you know it before you have your kid in there and you’re freaking out on how she’s treating your baby.

Without question, the two classrooms whose only real difference should have been the fact that they are in different high schools within the county system but the truth is completely different. What a difference a teacher makes in the classroom. Same basic curriculum. Similar variations in children’s personalities and abilities. Night and day the feel you leave when walking out of the classroom. It left me with an interesting decision to make.

I know when relating this to some of my friends yesterday everyone assumed that I would be choosing the class with the warm fuzzy teacher even though there would be no guarantee that the teacher who came in next year would be warm and fuzzy let alone with any talent or interest in teaching special kids. However that wasn’t what decided it for me.

Believe it or not Ms. Toughlove’s approach is the one I truly believe will work better for Katherine. Sometimes she really needs a kick in the pants. Without question she needs you to stand firm in the face of her behaviors. It is something I’m not always perfect about but I’ve come a heck of a long way. Sharon (Katherine’s personal support aide) is far better at it than I am and honestly – its just one part of what makes Sharon’s role in Katherine’s life so important.

Let’s face it. It’s just not always easy to be tough on your kid – especially when (s)he has had a rough day, week, etc. So often you just want to bring them close and kiss it all away. Being a teen is rough. For Katherine I feel like it’s even harder than it was when I was a teen. Sometimes it leaves me wanting to be warm and fuzzy but as I’ve learned in the past several years it really doesn’t help Katherine and the result is that it won’t benefit any of us in the long run.

So I went to the meeting at school where I said I want Katherine to have a dose of Ms. Toughlove please – in my warmest, fuzziest, most assertive manner possible :)

TiVo® Alert – The Miss USA Pageant

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Posted by Kyron | Posted in Disability Groups, Inspiriation, Television | Posted on 11-04-2008

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 MissMiss Iowa in the Miss USA 2008 contest 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

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Posted by Kyron | Posted in Articles, General | Posted on 10-04-2008

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 Perl Kingsley and her son Jason 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

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Posted by Kyron | Posted in General, News | Posted on 10-04-2008

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…

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Posted by Kyron | Posted in News | Posted on 09-04-2008

Melissa Riggio

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

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Posted by Kyron | Posted in Strategies | Posted on 08-04-2008

Well today we had to sit down and tell Katherine that Auntie’s illness was more than jusHope - 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

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Posted by Kyron | Posted in Depression, Mental Health | Posted on 07-04-2008

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 anLove through the mail 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.