So your child has special needs. You’ve gone through steps to grieve it, accept it, educate yourself and move forward.

But part of moving forward is making the decision of whether you want to become an advocate for your child’s cause. You have made this decision with your actions, like it or not. Either you are advocating or you are not.

But maybe you aren’t ready, or maybe you just need a little encouragement. Maybe there is a surplus of maybes, but I still ask you to let that encouragement be your child. On the fence? Consider exploring these scenarios:

I want to help, but I don’t even know where to begin.

If you want to advocate, you must first do some research on your own and decide where your skills are best suited. Discover a local or national chapter for the cause, and learn everything you can about it. Get involved. Find out what they need, and decide if the mission of the organization is something you believe in, and if it’s something you can give your time and talents to. We all have talent!

I want to help, but I don’t have enough time.

Like any parent, we are all busy, and you may have less support than others, but we can all find time. Put some time on your calendar and choose to make time to advocate.

If you are a working parent, perhaps you take 20 minutes during your lunch hour to make some calls or send some emails or even run an errand for the cause.

I want to help, but there are already plenty of people advocating for this cause. They don’t need me.

This might sound true, but think of how expensive research and change really is. Think of what it costs to keep a nonprofit functioning.

They have electricity bills, marketing campaigns and payroll, in addition to major groundbreaking research and federal lobbying to fund.

I want to help, but I don’t really have any fundraising or event planning experience.

If your child has a rare disability, like my 4-year-old son, Carter, with Williams syndrome, you should know it’s not just about raising money – it’s also about awareness.

It might be rare, but it happens – someone close to a family recognizes the signs of a rare syndrome because they were educated by a local awareness initiative.

You might not be able to provide a check for $5,000, but awareness, well, anyone can spread awareness. Yes, even you! You just might save a life.

I want to help, but I don’t want to pressure my friends and family to get involved.

I get that. It’s not easy asking things of others – especially if it’s something you aren’t used to doing, well, ever. But, remember you aren’t asking for you, you are asking for your child. What wouldn’t you do for your child?

And you can’t expect others to advocate for your child if you aren’t willing to either. It has to start somewhere. Plant the seed.

I want to help, but I have enough on my plate.

There is no shame in knowing when you have too much going on already. After all, we’ve all been there. Just decide when you want to help, or save up some money to help give a yearly donation to the cause. Or evaluate if there is something you can surrender to advocate. It is a rewarding effort you likely won’t regret.

Just a week ago, I helped in the coordination of the local FM Walk for Williams Syndrome Awareness. We raised almost $10,000 and had 170 walkers come out for the event.

Two years ago, had you asked me if that would be possible, I probably would have said, “Not in Fargo, not in a million years!”

I unmistakably see things differently now thanks to Anne Nelson, another WS mom from Fargo. We did it!

I want to pass on to other parents of special needs children out there, it’s OK to procrastinate until you are ready, it’s OK to be scared, but once you are ready and you take that step, it is valuable on so many levels.

 Kerri Kava is the Newspapers in Education coordinator for The Forum. Her 4-year-old son, Carter, lives with Williams syndrome.

If you are Fargo-Moorhead local, come on out to the FM Walk for Williams Syndrome Awareness tomorrow at Lindenwood Park! You can register the day of, if you have not done so yet. Registration is $25 per person and $15 for a T-shirt. Or $60 for a family of 4. After the walk a picnic lunch and music by Mark Proulx will be provided. The event will be emcee’d by KFGO’s Mike McFeely!

Address: 1701 5th S t South – Fargo

Time: Registration begins at 10 a.m. | Walk begins at 11 a.m.

Questoins? Call 701.367.8645

-Get to know other WS individuals and family members

- Raise awareness for this unique cause

-Raise money for the Williams Syndrome Association

-Have some fun listening to great music

-Enjoy the day outside

See you at the park!

Kerri

I was blessed with an extra day off  with my little monkey this weekend. We took some time to go to Yunker Farm on Friday. Carter explored the museum, the park and the carousel. We enjoyed some lunch at Subway and headed to the grocery store to tackle our Easter Brunch recipes.

But before we left for all of that fun, we had a momma-Carter breakfast and dyed some Easter Eggs. Just like last year, he ended up using his little fingers to pull the eggs out of their dying baths and his fingers turned a beautiful Gumby shade of green.

Here are some pictures from our Easter Egg dying:

When words are music to my ears

We patiently, hopefully even gracefully, wait for our children to speak, to mutter those first words. The ever so anticipated answers to: “Tell me where it hurts,” “What would you like to eat,” and even as dreadful as it can be, “Are we there yet?”

The ability to speak and use words is one of those flairs in life that most of us take for granted. It was after I become a mother to my unique boy that I soon realized the ability to use words is not created equal for all. My son Carter has Williams syndrome (WS), a rare genetic disorder. Individuals who live with WS possess substantial speech delays. Carter fit this description, as if it were written precisely for him. Lack of speech, unmistakable texture difficulties whilst eating and failure to understand reason are part of the cumbersome speech challenges he so diligently works to triumph over.

 I bear in mind advice from other mom’s friends or mom magazines with solutions to all things children.  The key particularly being, “Can’t you just explain to him?” or “You should really just sit him down and ask him.” As my heart is shattering on the inside with the often unsaid, ‘Do you not know my son at all? Do you listen when I tell you he is in speech therapy? My son can’t tell me where it hurts, when he’s hungry, how his day was, if he has a sore throat or ear ache and he certainly can’t tell me that there is a rock between his sock and orthotic and it’s aching with every painstaking step. No, instead I hear a whining or crying little boy who is yearning to be understood, but doesn’t hold the ability to use his words yet. So instead, I watch for those signs and learn to speak a new language with him.

 Finally, I am blessed with the opportunity to interpret the words that are coming out of his mouth because they are definitely difficult to understand, a task I’ll take on any day over him not talking. Just recently, he seems to be making tremendous strides. He has taken his few words of, “More!,” “All done!” and “Go outside?” to combining around five words. Sometimes the words don’t make sense in context and he’ll blurt out “Of course, I will,” without even being asked a question, but it’s a step in the right direction and from what I have heard from other families with a WS child who is older, soon enough, he won’t stop talking.

 Research shows that individuals with WS can have a more sophisticated vocabulary than the average person because they love to talk more than you or I. They learn new words and practice them and hold on to them. When I heard my 4-year old little boy say his first word about a year and a half ago, “Elmo,” my husband and I both had tears of joy.  We saw him commence such effort to speak, to finally be heard and to finally be “gotten.” Since he was about 6 months old, speech therapists have been working to help him develop his speech skills.  It started with signing, “More, all done, I want,” but once he learned a word, we heard it all the time. Of course, his requests to watch, “Elmo” never did cease, but recently now he says, “Watch Elmo, pleeeeease, Momma?” He’ll even initiate a question and give himself the blessing to go ahead because that’s what he wants the answer to be, “Go see Grandma and Grandpa, okay? Okay! Bye!”  (As he runs down the hall to go out the door – willing us to follow him.)

 In addition to his growing vocabulary, like any child, he loves animals. But I think I can say without hesitation that his animal imitations are more adept than most adults, particularly the donkey and the horse. It just goes to show, that although you may be in a spot where you think your child will never speak, it’s liable to come only when they are ready. It might not be today, or tomorrow, or even next month, but when they are ready – and when you hear those sweet tender words, it will indisputably melt your heart too.

Hi folks,

My mom said I could guest author today, she’s getting her hair did at Mad Hatters Salon or something like that. She told me to just be my friendly self and lots of people will be excited to hear what I have to say. So here I am huntin and peckin at the keyboard! Are you impressed with my spelling so far? I knew you would be!

Anyway – when my momma told me I could guest author, I’ll admit it was in the midst of me say “Puhleeeeeze, Momma I gotta reach my $500 goal to support the Williams Syndrome Association.” She said something about how she has been trying, but needs my help because I’m an expert, cuz I have it myself. Yep, you heard me right, I’m one of those uber special individuals who missin just a few genes. I said genes, not jeans… I wear pants everywhere! But sometimes I show off my belly – as you can see in this picture. But don’t worry, it’s a really nice belly; I gots a belly button and everything.

So when Mom said, “Do you want to guest blog on the Who Needs Who blog?” I said my new favorite saying ever of, “Of course, I will!” Yes - apparently I say that a lot and even when I’m not asked any questions! Neato, huh?! Oh and I pretty much say anything that you say around me and I will even mimick farts – so watch out folks or perhaps I should have said, watch your words around me folks!

Moving on to things that smell and sound better – lets talk about the FM Walk for Williams Syndrome Awareness – coming up on Saturday, May 5th at Lindenwood Park – Fargo, ND.

Did you know that if you want a free t-shirt/meal voucher you need to register by Saturday, April 14th? I hate to say this, but that’s only 2 weeks away from right now… and who knows how long it will take me to figure out how to post this thing?! Oh wait, Mom’s back she’ll help me. So – just don’t you hesitate, register right now. If you want to give, but can’t make it to the walk, perhaps you would consider helping me reach my goal?

To view my personal goal page – click here.

To register for the walk – click here.

To learn more about WS – click here.

To download a registration brochure – click here.

I’m so glad you stopped by. Now my mom said that I could end with a joke. I heard this joke from my cousin Faith – who is a sweetie pie. It goes like this, “How do you wake up Lady Gaga?”

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“You POKE ‘HER face!”

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Get it? Like “Poker Face” her song? Yea… I don’t get it either because I only listen to Elmo and the Backyardigans and that movie Rio!

Bye guys!

-Carter Kava

We made our maiden voyage out to Felton, Minnesota tonight for Carter’s first ‘Riding On Angels Wings’ Hippatherapy session. Mr. Carter could barely eat his Subway munchies due to his horse/cow excitement. No there are no cows, (that we saw) at Riding On Angels Wings, but Carter looked for them during the short country drive. Evidence of our country drive was all over my white Subaru; note to self, car wash tomorrow and every Tuesday until Hippatherapy is over.

We walked in and Carter immediately heard a horse neigh. He replied with the best horse imitation in the whole Red River Valley. After a short visit and getting to know the therapists and Betty, the ROAW Director, we were ready to go meet, Blue – ironically a Black Horse. Don’t ask me what breed, I just know “horse.” But, I’m sure my husband could tell you. He is a certified farm boy.

We knew it was far too good to be true that he would remain happy throughout the entire therapy session, after all – it IS therapy. But he was a brave boy and kept repeating it, “Good job, Carter” quickly following with “All done!” He did well, despite a few tears. We sang songs like, “Puff the Magic Dragon” to ease the nerves. Not long later, it was time to take the final lap, letter by letter and verse by verse, Carter and Blue rounded the corner to where Mom and Dad were waiting for him. But before coming over for plentiful high-fives, he was able to say good-bye to Blue until next Monday. Blue gratefully received not just a hug, but a kiss on the snout. We left and talked about Blue the whole way home. Tonight after his bath and story, we told Carter how proud we were of him to be so strong and ride the big horse, Blue. He was so proud of himself and finished his night with “Now I Lay Me,” which he can say now all by himself. Here are a few pictures from his session tonight:

Even though you see a lot of sad faces, he did great and did enjoy a lot of it. I just didn’t manage to capture one of the smiles.

Good night.

-Kerri

Overcoming surgery fears

By Kerri Kava

I recall how scared I was waiting to go in for a C-section to have my son. Edgy, nervous, wishing it wasn’t necessary.

But that passed and a new challenge was bestowed on me.

My son, Carter, who is now 4 years old, lives with a genetic disorder called Williams Syndrome. People who live with Williams Syndrome often have complications with anesthesia due to a weakened heart.

I remember the first time we brought 3-month-old Carter in for a hernia surgery.

That night was probably the worst night of our lives, not because of any procedural scares, but because I slept in a chair next to our colicky baby and my husband slept on this heater/bench contraption.

The surgery went well, and although they wanted to watch him over night because his breathing was irregular, we were able to go home the next day with careful instructions for him to not jump or lift anything heavy. Since he was 3 months old, we thought that shouldn’t be much of a problem.

By the time Carter reached 6 months, we were back at the children’s hospital in Minneapolis, doing the same inguinal hernia procedure, only on the other side. At this point, he had already gone under anesthesia twice.

I can’t explain that feeling, that moment right before your little child is whisked away to a surgery you’ve had weeks to prepare yourself for. I can’t imagine how I would feel if he needed an emergency surgery. I suppose there would be less anxiety for the day to finally be here.

Despite the gift of time, nothing prepares you for that moment. That last little finger grasp before he goes under; that last kiss on the forehead.

The moment he disappears between some double-swinging doors your knees go weak and what you really want to do is slide down the wall and cry because you know you can’t do the one thing you want to do. You want to go in there and help. Your heart is trying to convince your brain to grab your little baby and run back to Fargo.

One year ago this week, my husband and I brought our son back to Minneapolis for a triple procedure. We were able to do an echo to check his heart, put tubes in his ears and do an eye-alignment surgery all in the same operation, undergoing anesthesia only once.

The surgery was a success. And better yet, it was over.

That same night we were able to bring him to the hotel at which we were staying in downtown Minneapolis. I remember lying him down to sleep on the giant king-sized bed and ordering room service with my husband.

There wasn’t a table in the room, so we celebrated the success of the surgery and our sleeping, healthy boy by having a little picnic on the floor and clinking our fancy water glasses together.

That night and driving home the next day, we felt like we had won this round. Round 2 soon came while doctors determined if his little brain would allow his eyes to stay aligned after moving those muscles to a new place. As it turns out, it’s not aligned perfectly, but it’s so close that his doctor believes there is no reason to proceed with another surgery.

We hope we hear the same answer this week when we travel to the Cities for his one-year follow-up.

Every trip, every appointment, every mile, every last detail is so easily forgotten when every morning, I wake up and open my eyes to see this little boy staring at me.

“Guda morniiing!” Good morning, my sweet little pea.

Kerri Kava is the Newspapers in Education coordinator for The Forum.

Support Williams Syndrome

Support Williams Syndrome Awareness locally by participating in the local FM Walk for Williams on May 5 in Lindenwood Park. You can register online and learn more about Williams Syndrome by visiting: www.williams-syndrome.org.

I found this poem today. I can’t take credit, notice I said I “found” it online. But it is well written and has a great message that I would like to share on my blog. So here it is:

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever  go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

*     *     *

©1987 by Emily Perl Kingsley. All rights reserved.  Reprinted by permission of the author.

back to Circle of Friends home page

I was probably a little naïve going into it.

Of course the last one went fine, even though he cried. The gal got it on the first poke, no problems. He got a Muppets sticker. Well, he got a few actually, but don’t tell anyone. We walked out of there to find the sun shining on our faces and smiles came again, soon after. The tears were quickly forgotten.

This time was much more difficult. Not only had the gal I’d grown to depend on for my son’s blood draws drop the ball, but my son became much more difficult to restrain. We couldn’t hold him down with just one or even two people anymore. No, now it took a whopping four people to restrain and draw blood from his tiny little arm, searching and seeking for his tiny little blood vessel.

This painful process repeats itself every two months in order to check his calcium levels and maintain a level he can live with.

My son, Carter, who has a rare genetic disorder called Williams syndrome (WS), has high probability of getting Hypercalcimia (too much calcium in his blood). For some reason, people with WS absorb calcium at an extremely higher rate than the rest of us. Due to its rarity, it’s under-researched, leaving most of us who want to know, left to wonder and wait.

Left untreated, Hypercalcimia can cause body pains, kidney stones, and it could cause your heart to stop. That being said, we do the one thing we know how to do – sustain it with diet so he doesn’t have to undergo cumbersome Pamidronate infusions. It involves drinking as much water as possible to flush out the calcium and replacing regular milk with a special formula called Calcilo. Taking both of these steps is fine with us, it’s the blood check every two months that’s becoming more strenuous. (Although much less strenuous than the infusions.)

We’ve all been there. Sitting, standing, whatever position you find yourself in while your child is screaming in pain. I can name no other circumstances similar to that emotion. That feeling where your child is hurting and you, their No. 1 advocate, rendered motionless.

I sputtered some words, which I know he didn’t hear over his agonizing cries. I’m almost sure I just say them out loud because I know the staff members want me to say something. So really, I just say it for them because there is no reasoning with a child who is screaming in pain. Especially not mine who has special needs and doesn’t understand reason.

After all of that, Carter’s lab technician couldn’t find the vein. Let’s face it: We’ve been drawing blood from these little arms for all of his four years of life, since he was 5 weeks old. Isn’t it obvious by now? Would placing a stick-on tattoo with an arrow be going too far? I’m starting to think it would be appreciated.

Everyone says different things. Go to the main lab between 10 a.m. and 2 p.m., because that is when the most experienced technicians are on duty. So we do. Believe you me, it is much more convenient to wait until Saturday, but we don’t do that in hopes to have a quick and (not as) painful blood draw.

Others suggest we try nitrous. Well, we’ve done that for other things and due to his short gag reflex, he made himself throw up. Still, I think we’re going to try that again, in addition to some cream to numb some of the pain.

I wish we could take away all of the pain. As parents, I’m sure we would all do that in a heartbeat.

Perhaps it’s that very pain we experience, as part of motherhood, that is the pain our mothers wish they could take from us as well.

Kerri Kava is the Newspapers in Education coordinator for The Forum. She can be reached at kkava@forumcomm.com.

Patching and pointing and taking it in stride

This Thanksgiving weekend reminded me of a life lesson to be thankful for. Actually, I have my son, Carter, to thank.

The lesson stems from a recent trip the two of us took to Fleet Farm.

“Just a little longer now buddy, we’ll go look at cows and you can play while we wait for our tires to be put on the car. But please don’t fuss. You know you have to wear your patch for a couple hours every night to help strengthen your right eye.”

The sound of little feet pitter pattering full speed toward his favorite thing – toy cows – my 4-year-old boy with special needs does so with his left eye patched, looking like a pirate, without so much as a complaint.

“Run, run, run …” which sounds like “won, won, won” coming from his little lips as the anticipation grows. We walk in alongside another family with three children, all boys. One boy is old enough to wonder, “Why is there a patch on that little boy’s eye?”

Carter, who has Williams syndrome, a condition in which Strabismus (a fancy term for when your eyes do not line up), heart complications and developmental delays are common, never notices or picks up on the social cues of him being different. I find that a blessing. I wish I didn’t detect it. Then, it wouldn’t plague my heart so much.

My husband is exceptional at ignoring or not even noticing other people staring, he just goes about his business and sets his mind toward the goal, whatever that may be.

I’m not as good at that. I notice other people, even adults. Truth be told, I think its other adults that allow it to be the most difficult. Had that mother stopped staring, maybe she could have demonstrated to her child the correct behavior: to move on with your business and not stare, because it isn’t polite. This is merely conventional manners right?

If you see a burn victim or a person with dwarfism, yes their appearances may be different, but that does not warrant it OK to stare, much less point, which occurred later in the same visit to the store. Perhaps I shall pretend they are staring because of the brilliant blue eye that is showing or his amazingly captivating smile.

Carter has struggled with his eyes since he was a newborn. We patched his left eye for a couple of years before finally having a surgery to correct the crossing last spring. A few follow up appointments later confirmed he needs to start patching again. In efforts to avoid a second surgery (where anesthesia is often fatal for people with Williams syndrome), we are patching just as instructed by his eye surgeon.

A couple of years ago, I remember standing in church, singing songs with my family, not able to focus because of two children in front of us that absolutely could not stop staring at his patch. Another year later, no patch on, a woman felt the need to point out that he had Strabismus, as if we had no idea. I like to think this doesn’t get to me, but I would be lying if I told you it doesn’t hurt.

I understand people are curious, especially children, and I’ll be the first to tell you that I adore children and their curiosities. I think instead it’s something special needs parents need to work through, understanding your child is different and special, and knowing that with those special attributes come special challenges.

Learning to sit up, crawl and walk were very difficult for him. Now he is working hard on talking. And like many other children who don’t even have special needs, he needs to train his eyes not to cross. Our little boy, full of joy, lets you put the patch on and simply wrinkles his face a little when he knows it’s coming, saying “OK.”

If we all have this “can-do” attitude to whatever challenges we face, what a better world we would have to live, learn and love in.

Kerri Kava is the Newpapers in Education coordinator for The Forum. She can be reached at kkava@forumcomm.com.