thespecialparent.comSpecial People Parenting Special Kids

I swear to God (and I apologize to God for swearing) but for crying out loud! As the years past it becomes apparent to me that sometimes you just have to do it yourself.

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: Yes, my name is Kyron and my daughter is Katherine and we spoke several times yesterday and you said you would have the results of my daughter’s abdominal MRI from April 24. As of today I still haven’t received those results.

Doctor’s Office: We still don’t have those results in.

Me: Well you told me yesterday you would.

Doctor’s Office: I plan on calling them again today.

Me: Well, you told me that yesterday. What happened?

Doctor’s Office: I called and they still haven’t faxed the results.

Me: Well you should call them again and tell them you have an incredibly irate parent awaiting these results and beg them to fax them immediately so that you can get her off your back.

Doctor’s Office: I’ll do that right now.

Me: {note terse voice} Thank you.

Off the phone we go and then I call my contact at the facility. I get a name and number of a supervisor. I get assurances it’s been faxed already but they will be happy to fax it again if the doctor’s office will just call and request it. No problem I assure them. I take a name and direct number (I’ve been transferred at this point a couple of times) and thank them for their assistance.

My belief is that it has been faxed and the doctor’s office is pretty much incompetent since this person at the facility pulled everything up in a couple of seconds flat. Of course they couldn’t give me information over the phone because they have rules about that. So here we go again…

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: This is Kyron, Katherine’s mother AGAIN. I just got off the phone with the MRI facility and you should call Christine at 404-555-1212 right now. She is expecting your phone RIGHT NOW. She has the information already pulled up – all you have to do is call and give her the fax number. {Inference is that she should be appalled that I am doing her job but it’s fairly obvious that she’s non-plussed}

Doctor’s Office: Oh, ok, I’ll call right now.

Me: Thank you, I’ll call you back in one hour.

Doctor’s Office: Oh, ok.

Would you believe as of 5pm tonight I am STILL chasing this freaking report. My only comfort is that if it was catastrophic I’m hoping that the radiologist would have expedited it.

How come that is such little comfort?

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It happens to every parent at some point. Your child is ill, your in a hospital or doctors waiting room just waiting for someone to give you an answer. That’s where I am today only I have the mixed blessing of being at home waiting in front of my computer instead of an emergency room or hospital room (although I’ve done my share of time in both of those).

Katherine has had hypertension for about a year now. We had attempted to address it with diet and exercise alone and it became clear about 2 months ago that this was not working and the blood pressure continued to rise. We put her on medication but the cardiologist we’re working with wanted to rule out renal artery stenosis (narrowing of the renal artery) which can many times cause hypertension. They did an ultrasound and instead of what they were looking for found a mass on her kidney. Well this brought on our first association with a nephrologist.

The nephrologist wasn’t particularly comforting to be honest. The cardiologist seemed to think it was likely to be a cyst – the nephrologist seems to think that cysts are far more comforting in the 50+ set (which leaves Katherine out). So he thinks an MRI to truly understand what it is. Fine. So off we go and wait 4 hours to have the test done LAST Friday only to be told at the last minute that all the metal in her mouth (braces) has to be reviewed by the orthodontist because there’s stuff in there that could break their machine – ok and worse – break Katherine’s mouth. So how do you get mad at them for stopping us from doing that?

The man who runs MRI at the facility we were at gave me his personal business card and said as soon as we could get the parts of her braces which were conductors out of her mouth we could call him and he would not make us go through the wait process again. True to his word I called him and within 1 hour his assistant called us back and had us scheduled for the following day.

This time the test went off without a hitch. She was a real trouper while they gave her an IV for the sedation and contrast. They said after 55 minutes they had gotten what they needed. Fantastic – what did you see??!! Now you KNOW that the answer that followed was one that has frustrated parents from sea to shining sea – We have to wait for the radiologist to review it. Oh SHOOT ME!!

Me: Well now how long?

Them: Oh within a week.

Me: I don’t mean to be impatient but their is SOMETHING ON MY DAUGHTER’S KIDNEY. I’d like someone to just tell me what exactly it is and if it’s something we have to be worried about?

Them: Well you could call the doctor and see if he can get it sooner.

Me: So you mean we have to wait until one doctor actually connects with another doctor??? Does Armageddon happen before or after?

Them: tense laughter, polite smile

So now having called the doctor first thing this morning, first thing after lunch break and 10 minutes before 5 here I am waiting until Monday and praying that the God who saw fit to entrust me with this precious package will understand that I’m mortal and I can only take so much waiting….

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Oh no, not a bad joke just look at those kids!! They sure do look like they are having fun!! Your kids can have fun too and for a good cause!

Citrus lovers from around the world including the United States, Canada, China, Korea, Hong Kong, Japan, Singapore, Malaysia and Taiwan are invited to submit original photos of themselves with a creative “Sunkist Smile” (orange wedge in the mouth) to celebrate Sunkist’s 100th Anniversary. Now through May 15, 2008, consumers are encouraged to submit a photograph of their best Sunkist Smile and brief caption to www.sunkist.com/smiles.

Judging criteria are based on Creativity (40%), Fun Factor (30%) and Quality of Image (30%). One grand prize winner from each country will win a trip to any country in Asia and have his or her photo prominently shown on the world-famous Reuters Sign in Times Square in the heart of New York City! Five runners up will each receive a digital camera and one month’s supply of Sunkist citrus!

Adding to the excitement of commemorating the 100th anniversary of the Sunkist brand, Sunkist will celebrate and honor consumer participation by making a donation of $50,000 to Special Olympics, another brand known for creating joy and helping families stay active and healthy. See www.sunkist.com/smiles for official contest rules.

Terri Mauro of Special Children at about.com summed it up best in her post about this contest when she said the contest:

sounds like a good opportunity to get silly with your kids and upload a photo for a good cause. Since children with special needs stand to benefit from the Special Olympics donation, it would be cool if they were well-represented in the photo gallery, too.

Why not take a bit of time this weekend and have some fun with the kids and maybe you could be the lucky winner!! Certainly all our children who compete in Special Olympics will be winners by building up that donation!

I’m new at this but I’ve set up a Flickr Group ‘The Special Kids’ so we can share pics of our beautiful kids. This way we can see all our kids who we submitted to the Sunkist contest!!

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Well tonight was the end of the road for Marlee but think about just how far she made it and you can’t help but be proud – and hopefully she is as proud of herself as we are of her.

Who knows whether she’ll ever see this but if you do Ms. Matlin – you have done us all proud and we are forever grateful for your example. I continue to try to utilize it in my day to day life. My daughter will be quite sad to see you go. You see, she thinks your super cool like Aunt Mary (my stepsister) who is also profoundly deaf and is an amazing mom, wife and teacher. Maybe not quite as good a dancer as you but not many of us are

thanks to lifeprint.com for the graphical depiction of PROUD above 

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Ok did you see that cute 13 year old Brandon and Brittany?? Oh my goodness they were amazing and Brittany is deaf in one ear. It’s the Marlee effect (ok obviously not but hey!) in the next generation. I was so blown away by their performance I had to share.

I do love this little Juniors competition. The kids are so talented and they are so cute ya just wanna pinch their cheeks!! Yay!! Brandon and Brittany advance to the next round in the Junior’s competition!!

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There are many children with a diagnosis of ADHD, some concurrent with other issues. A new study from the American Heart Association however is showing that a basic test should be done on our kids taking stimulants for their ADHD.

The American Heart Association believes that all of the estimated 2.5 million children taking ADHD medications should have an EKG to rule out problems. This test should be done on children both who have been taking the medication for some time as well as those who have just started. No one believes at this time that the medication is causing heart disease. It is believed that somewhere in the neighborhood of 1 in 50 of children being treated for ADHD may have a previously undiagnosed disease. For some reason children with ADHD are 3 times more likely to have heart problems.

This MSNBC/Today Show video is well worth watching if you have a child taking ADHD meds. Please take a minute to point it out to a friend who has a child who is taking these meds if yours isn’t. It’s information that should get out there. While it’s not reason for panic, it is most certainly reason to check with your pediatrician or prescribing physician. An EKG is an inexpensive, non-invasive procedure that takes only minutes but could absolutely save a life.

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Governor Palin,

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!

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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 is 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.

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…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the 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.

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…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.

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.

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