Special People Parenting Special Kids

Governor Palin,trigpalin Alaskas Governor has 5th child, a son with down syndrome

Congratulations to you and your husband and happy birth day to Trig Paxon Van Palin! With that, we take this opportunity to also welcome you to the amazing country of Holland. You’re very familiar with the Italy tour (having four older children) and I want to assure you that your time in our little part of the world will be very different than your tour of Italy but as your statement already seems to recognize it will be no less thrilling albeit with different challenges, milestones and achievements.

God has indeed entrusted you with this beautiful soul. It speaks volumes because it takes a truly special person to be a special parent. That’s not to say we’re a bunch of saints by any stretch. We all have our share of foiables. Just by way of example, as a rule special parents suffer from depression at a higher rate than parents as a general category. We won’t all have the same foiables but we all share one thing in common – a fierce love of our child and a determination to maximize their potential for success and independence in the future.

You’ll find that it’s not always so easy to achieve that. There is the medical labyrinth, the educational labyrinth and the governmental labyrinth. Oh and the stigma labyrinth, the hyperactive worry and oh never mind. In the end game it all pales in comparison to what joy you are having right now holding that precious bundle you gave birth to.

My mother often said to me – much is expected of those to whom great things are given. I certainly hope you’ll abide by that. Being the Governor of Alaska gives you an incredible opportunity to advocate for your son and the greater disability community. To often those in government really don’t understand why changes are required. You will be in that unique position to not only understand the needs of the disability community better than most but more importantly, you actually have a position that gives you the ability to affect change with your access so many of us could only hope for.

Of course it’s only conjecture at this point that Trig has down syndrome but your statement makes it clear he has some special needs.

Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed.

We certainly wish you all the best and hope you’ll lean on those of us who have already started on our journey in Holland for the love and support we will gladly give. Trig, you are already blessed, little angel, to have parents who recognize what a privilege they have in being your parents. I’m pretty sure your parents are right that you have great potential to make the world a better place. For now, just rest easy knowing you will be loved by not only your family but the greater family you’ve just become a part of and don’t even know it yet.

Much love to you and your family.

picture courtesy of KTUU TV Alaska

Thanks to Michelle to pointing out this beauty’s birth!

As the parent of a special needs child I am frequently out and on the road at doctors appointments, IEP meetings and after school special activities. Rachael Ray may be the queen of the 30 minute meal – I’ve become the queen of the 8 hour meal! The crock pot iscrockpot1 8 hour meals….(*apologies to Rachael Ray) Barbequed Country Style Ribs my hero! I throw a bunch of ingredients in the crockpot first thing in the morning, set the time I want it to cook (typically 8-10 hours) and off I go to only open it up in time to serve dinner to the hungry hordes. Weekly on Sundays I will share some of our family’s favorites.

Ok I will preface this recipe with the fact that while our family does like barbeque (ok well everyone but my husband likes barbeque) this is a NEW recipe for us. It’s sounds so good and will be tomorrow night’s meal so I’m sharing it before I taste it. This however is not something I’m fearful of because Diana Rattray and recipes from Southernfood.about.com have never let me down before – I don’t have any reason to believe they will this time either. On that note – on with the recipe!

 

INGREDIENTS:

  • 3 to 4 pounds boneless pork country-style ribs
  • 1/2 teaspoon salt
  • 1/4 teaspoon ground black pepper
  • 1/4 cup light brown sugar, packed
  • 2 cloves garlic, minced
  • 1 large onion, halved, thinly sliced
  • 1/2 cup apple juice
  • 1 bottle (16 to 18 ounces) barbecue sauce, about 1 1/2 cups

PREPARATION:

Lightly grease the crockery insert of a 5 to 6-quart slow cooker. Wash pork, trim excess fat and pat dry with paper towels. Put the sliced onions in the bottom of the slow cooker, then place pork on top.

 

Sprinkle the pork with salt and pepper, brown sugar, and minced garlic; turn the pork ribs to coat all pieces. Pour apple juice evenly over the pork. Cover and cook on LOW for 8 to 9 hours. Drain liquids from the pork. Pour barbecue sauce over the pork and stir slightly to distribute the sauce. Cover and cook on LOW for 1 hour longer.
Serves 6 to 8.

…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from thecoffeepaper1 The Sunday Paper for April 20, 2008... past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

‘High School Musical’ production takes social inclusion to new level

One of the most successful Disney movies ever has been adapted to stage and performed by thousands of high schoolers across the nation but none possibly as inclusively as this one.

Stars shine at special needs talent show

Children at a local Ohio high school put together an amazing talent show ‘featuring’ Trace Adkins, Jerry Lee Lewis, Avril Lavigne and Soulja Boy.

Zambians pledge stronger voice in disability advocacy

A learning exchange between officials in Zambia and The ARC of the Twin Cities of St. Paul will increase advocacy for the disabled in Zambia.

Yoga’s appeal broadening to disability community

The ability to adapt this form of exercise to a multitude of disabilities makes its application almost universally beneficial.

Labour leader Gary Parent wins United Way Award

Gary Parent says he is humbled to receive this national award for doing “the right thing”

This prom is an enchanted evening

Everyone from parents to teachers to janitors kick in to make an ‘Enchanted’ evening for these special kids

U-46 holds first prom for special needs kids

Tuxedo rental: $150. Boutonierre: $10 Tickets for two: $50. The chance to attend a very special prom? Priceless.

One Shoe Two Shoe Three Shoe Four…

Apr 19, 2008 Author: Kyron | Filed under: General, Resources, Services, Strategies

…five shoe, six shoe, seven shoe – Heavens Sake NO MORE!!!

Sounds like a cute rhyme that preschoolers say to learn their numbers but for me it was a little ditty about buying shoes for Katherine yesterday.

Katherine has never been a shoe horse – when you wear an orthotic, fashion via shoes is never something you really consider. As a youngster it wasn’t so bad, sneakers are sneakers are sneakers – as long as Katherine could get the favorite color of the month it was fine. Then you become a teenager. And every girl has some sweet pair of wedges, espadrilles, pumps, flip-flops or some OTHER fashion must have that would have Katherine falling on her face, breaking an ankle along the way.

Just about a year ago now, Katherine went through a heel cord lengthening. It was a difficult decision but for us – but for Katherine it has been one of the best decisions we’ve made on her behalf. Her gait is greatly improved, her mobility far better than it has been in years. It is because of this that shoes have even become a part of the discussion again. At her checkup this past week she mentioned to the doctor that she wanted “party shoes” and after some discussions about type and length of wear party shoes it was!

So off we went. We needed summer shoes for her anyway. The boots she wears during the winter would soon become oppressive in the Atlanta heat. Katherine can burn through the sole in most sneakers in 2-3 months max. The doctor sent us to a shoe store called McMahan’s in Decatur, GA (which if you need shoes that fit well and are well fit for adults – sorry I don’t think they have children’s sizes, look no further). They were meticulous in their pursuit of the perfect solution for Katherine.

Let me mention at this point that we have known for some time now that Katherine’s feet are not the same size. They have not been for years. The foot that has been affected by her stroke has atrophied and has not grown at the same rate as her other one for many, many years. We have compensated for that by using inserts in her shoe to fill up the space.

This has worked pretty darned well – up until yesterday when the nice (and did I mention patient) man working with us was quick to comfort me in the knowledge that Katherine has stopped growing. (how comforting that is is up to interpretation but that’s a post for another day) He also explained to me that her feet have grown since she was measured in November and her feet are now officially 3 sizes and one width different from each other. We now have a size 6 medium foot and a size 9 wide foot.

If you are doing the math the little ditty I started this post out with is starting to become clear. I would for the record at this time to say what incredible respect I have for parents with 4 children who all need shoes at the same time. I thought I too would have a stroke. I thought when my husband saw the charge hit the card he’d give me whatever stroke I didn’t give myself. . .

Then I looked at Katherine walk in these properly fitted shoes. I literally cried. Not big heaving sobs but little silent tears that just roll down your cheek without notice when the love in your heart just starts to pump the water in your tear ducts. It was the single largest improvement I have seen in her since we made the decision to do the heel cord lengthening.partyshoes One Shoe Two Shoe Three Shoe Four...

Last night my beautiful 16 year old baby young lady went to a school dance in her properly fitted party shoes that had been given a little extra help and a little extra stability by a talented man who lives in the basement at McMahan’s Shoes. My heart was pushing the water out of the tear ducts for a second time that day as I got yet another shot of how very quickly they grow up and relished the feelings I’m sure every “normal” parent feels when their kid goes off to a school dance for the first time.

While she dance the night away I just held on to the pair of shoes that would never know the joy of dancing with my daughter but were worth every dime we spent on them.

JacksLists.org

Apr 18, 2008 Author: Kyron | Filed under: Diagnoses, Inspiration, Strategies

I found thwhtcne JacksLists.orgis 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…

Apr 17, 2008 Author: Kyron | Filed under: General, Inspiration

2008 ia miss crown An open letter to Ms. Curran...This 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

Apr 16, 2008 Author: Kyron | Filed under: General, Strategies

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 anyschoolbus One Dose of Tough Love 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 icon smile One Dose of Tough Love

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