Rare Disease Day--Our Blake

Today is Rare Disease Day, and people all over the world with children that have rare diseases are bringing more awareness to their child's diseases or disorders. Until this year, I never considered any of my kids to have a rare disease. I decided to look up "mastocytosis," the disease that my middle child, Blake, was born with, and there it was, on the NORD website (National Organization for Rare Disorders):

Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs (liver, spleen, gastrointestinal tract and lymph nodes). Cases beginning during adulthood tend to be chronic and involve the bone marrow in addition to the skin, whereas, during childhood, the condition is often marked by skin manifestations with minimal to no internal organ involvement and can often resolve during puberty. In most adult patients, mastocytosis tends to be persistent, and may progress into a more advanced category in a minority of patients. Mastocytosis can be classified to a specific type depending on the patient’s symptoms and overall presentation.

Blake when he was around one year old.

Blake presented with two spots on his stomach that looked like birthmarks. The doctors and nurses said nothing was wrong and did not suspect a thing. It wasn't until we took him home from the hospital that things got scary. He would flush, or turn red, over his entire body. I remember holding him and watching as the redness would start just around his nose, and slowly spread until his whole body was red. The next symptom was blisters on the large spots on his stomach, and they looked so painful.

When he was just a week old, I took him into the pediatrician and showed her what was happening. She had no idea what would cause the blistering, and wasn't sure about the flushing, either, but guessed it was impetigo and prescribed some cream. When that didn't work, I came back a week later, more scared than ever. I pleaded with her to tell me what was wrong with my baby. She told me she had no idea, and that I could call the dermatologist, since it seemed to be related to the skin.

I called that day, and of course with most specialists, there was a back up of 4 months just to get an appointment. But when you are a mom, sometimes you can't take no for an answer. In tears, I begged the nurse on the other line to get my child seen right away. I told her that something was really wrong, and I was scared to death. I told her about the symptoms, and how when he flushed he squirmed and seemed so uncomfortable, and that he now seemed itchy. She said the best she could do was put him on a cancelation list. I did everything I could to help him--the only thing left was to pray.

The next day, just before he was 3 weeks old, I got a call from the dermatologist office--they had an opening and wanted me to come the following day. I cried and thanked them. I was so relieved that I would finally get answers for my son's symptoms. Google was no help, and my pediatrician was stunned, so this had to be the place where he would get some kind of diagnosis.

As soon as the dermatologist took one look at Blake, she diagnosed him with "mastocytosis," and said that his condition was most likely uticaria pigmentosa, or related to the skin only. We had to run some blood tests to rule out internal organ or bone marrow involvement (which came back negative.) She was able to explain to me the reason behind the symptoms in a way that made sense. She told me how to care for him. She said by age two, the symptoms would almost disappear, and that he would keep getting new spots all over his body until then. She prescribed medication for him when he was 4 months old to control the histamines in his body, and also prescribed an epi-pen because there was always a risk that when he flushed, he would go into anaphylactic shock.

So until he was two, I watched him like a hawk. I ached for him every time he flushed, and began keeping a count of how many times he did each day. The numbers slowly went down from around 8 flushes a day to once or twice a week by the time he was two. We went to the dermatologist every 4 weeks until he was that age, and when he turned two, and his symptoms all but disappeared, she said we would not need to come back unless something went wrong again. She said his spots would slowly fade until he reached adolescence.

We haven't been back to see her since that time. Though there were a few scares after that in which we simply called her (she gave us her cell phone number) there was nothing to be worried about. He learned to accept his spots and every day I would tell him that the spots made him special. He's 9 years old now and the spots really have been fading. I don't think anyone in our family gives them a second thought--they are just part of his childhood, and in a few years, they will only be a memory.

It's always frightening when your child's pediatrician doesn't know what is going on with your child, and you have to be sent to a specialist. I feel so lucky that the dermatologist knew exactly what it was and could help us. I am positive that many parents don't have that experience and might go years before they know what is causing their child's symptoms.

I don't talk much about Blake, because his mastocytosis doesn't affect him at all anymore--only the spots remain, for now. I feel blessed to be his mom and to have the chance to learn more about a rare disease like mastocytosis. I've never had a chance to help another parent concerning this disease before, probably because it is so rare, but I have found wonderful Facebook groups in the last few years. Blake has never met another child with the disease. But he knows he is special because he is Blake! The disease does not define him.

If you are writing about a rare disease today, link your blog to this one! Spread more awareness!
http://myunplannedson.com/2016/02/29/world-rare-disease-day-rarewriter-blog-linkup/

Give your Child Time to Blossom

 

I love gardening. I'm not a professional, but there's just something so exhilarating about seeing growth and progress over a period of time, and knowing that my own hard work helped create that—I water, I fertilize, I tend, I protect, and I let mother nature do the rest.

Last spring, I was really ambitious. I bought 8 different berry bushes and had them shipped to my home. They were basically sticks with roots attached. I planted them in pots with good soil, watered them, and watched all summer as they slowly took shape. The vines began to grow, leaves sprouted, and we didn't get berries this year, but I hoped that I could keep them alive during the winter to see them grow again. I worried when they lost all the little leaves and appeared to be dead in their pots, and hoped my investment wasn't in vain.

Last fall, we bought three fruit trees: a peach, pear, and orange to add to our young pomegranate tree. We made sure to plant them very carefully with room for the roots to grow. They lost all their leaves during the winter. I could only hope that they would thrive again in the springtime, and the only way to find out was to wait.

So I waited through the colder days of winter and watched. Many days and even weeks went by where I didn't give those bushes or trees a single thought--they all sat there lifeless in our yard. Toward the end of January, I went outside to look at the berry bushes in pots and noticed their roots had extended into the dirt below through the drainage holes. They were still growing, though they appeared completely dead. The proof was in the roots. And soon after that, our fruit trees grew tiny buds. Life was still happening despite all the deadness. To me, it is a miracle, this cycle of life in nature. And with our own children, we can see miracles, too, though at times, we might feel like their progress is dead as the winter.

 

Even when it seems like your child is not making progress, remember: growth is still happening. After the dead of winter, a tree will blossom. Give your child time to blossom.

Parenting special needs children means you have to give great care and attention. Yes, mother nature is helping, but the watering, fertilizing, and tending are often doubled--and it's often done by more than just the parents—doctors, therapists, special teachers, case workers, specialists, extended family can all lend a hand. But the biggest factor in change will be inside themselves--there's only so much you can do. We can give them roots, but they need to blossom on their own.

My three children have each needed extra care. My oldest, on the autism spectrum, had to be taught many times to learn a new skill. While other children might blossom after a gentle gleam of sunlight and a trickle of rain, she would need full sun and rainstorms. I still remember when she was a little toddler and motor skills were a challenge. After intense physical therapy and working with her at home myself, she blossomed into a walking girl at 20 months old. No matter that she did it later than her peers--she has her own life cycle she's following, and though it was hard for me to be patient, I had to let her bloom on her own time.

Soon after her walking took off, I began to notice that other body movements did not come naturally to her. Stepping off of curbs or walking down stairs was frightening to her. At the playground, she couldn't figure out how to climb a small ladder to get to the slide. So I worked with her, every day, putting my hand over her hand, then my hand over her foot, guiding her, teaching her the movement of climbing a ladder until it became natural to her. There were dead periods during this time, where I felt like my efforts were in vain, like I was looking at a dead tree with no life or hope of progress. All I could do was hold on to the hope that the little things I was doing with her every day were somehow adding up inside that tiny body of hers, and that when the winter of this learning season passed, she would bud and bloom. And one day, it happened--she climbed the ladder without my help. It was so sudden, quite like how the blooms on a tree seem like they would never come, but then one day, they're there. Growth was happening, on the inside. It was up to her to bloom, and she did.

A similar experience happened with my youngest, who was born with a cleft palate. We were told that he would probably not need speech therapy after his palate repair surgery and ear tubes were placed, but soon after his first birthday, his speech began to regress. I feared autism, but it turned out that the ear tubes had fallen out, and after they were placed again, his ENT recommended speech therapy to help him catch up.

So when he was 18 months old, we began speech therapy. I would take him once a week, and watch as the trained speech therapist worked with him and listened to the sounds he would make. We began to see that some of his sounds were coming out nasally--a common thing among children born with cleft palate. The therapist would help him focus on one sound at a time until he could say it right. First it was "D." And after taking him to therapy for months, there was still little progress—a dead spell, where I felt like maybe this therapy wasn't paying off. But then one day, he blossomed. He spoke the "D" sound correctly, like it came out of nowhere. Those little roots were growing all that time. And again, it was up to him to bloom. We helped him plant the roots, and he showed the fruit of our efforts beautifully. After that, there was no stopping him. He mastered sound after sound. Currently, he is in a dead period with the "S" sound. But I don't doubt the roots are growing fine on that one, and that he will blossom in his own time.

Growing a garden is a lot like raising children. It takes patience, planning, effort, care, and nurturing. But most of all, it takes hope, and willingness to never give up on the little things that will eventually grow from all the effort. The blossoms will come and the joy will be great--even greater than the joy of seeing new life sprout in my backyard.

The Standoff: Parent Vs. Preschooler

 

It was a typical scene in a typical old town. The old-timer cowboy vs. the rookie cowboy in a standoff.

The old timer twisted the heel of her boot into the dusty road, gripping her trusty weapon: a controlled temper. Her eyes stared straight ahead into the eyes of the rookie, as if to say, "Go ahead--make my day."

Now the rookie might be young (and very short) but he's got new tricks up his sleeves. While flashing his dagger eyes he whipped his arms across his chest and folded them tightly as if to say, "Oh, yeah? Try me." He held his razor gaze fiercely, the daggers piercing the weak spots of the old timer.

The old timer flinched, but only for a split-second. "Haven't seen that move before. You are wise beyond your years." She clenched her weapon tighter. He disobeyed me, so I have to follow through. Don't lose control. "If you want your light saber back, you need to say 'I'm sorry' and lie down on your bed." It was a simple request, but the rookie wasn't backing down.

He tossed out his next tactic: the tantrum. He fell to the ground, kicking and screaming and crying.

The standoff was heating up. Onlookers from nearby, leaning on the wooden railings of the tired town stores, shouted to the old timer: "He's losing it! What are you going to do?"

The old timer steadied her grip. "Don't worry. I've got this. I won't give in." She wielded her weapon of self control like a triumphant flag, and gritting her teeth, repeated, "All you have to do is say 'I'm sorry,' lie down on your bed, and the light saber is yours." Even with her grit, she said it so smoothly that it pierced the rookie to his core.

It was the ultimate battle of wills. Who would give in first? The standoff was reaching its peak. You could almost hear the other cowboys in town whistling in the background, the wind whipping the women's long skirts, the men spitting into the dirt.

The old timer remained cool as a cucumber while the rookie reverted back to the stare-and-glare, arm-fold stance. "You know what you have to do," the old timer said.

The rookie whispered faintly the words, "I'm sorry." He took a step back and sat on the edge of the bed and glared daringly at the old timer, as if to say, "There. I'm on my bed. Are you happy now?"

The old timer dropped her weapon of self control to the ground. He's not lying on the bed--he's just sitting on it! But before she lost her cool, she glanced at the clock. She took off her boots and rubbed her weary feet and thought of the long day with the rookie. Well, we can meet in the middle--THIS time, she thought. She took off her cowboy hat, put on her mother hat, and stepped into the room. The rookie lost his rigid stance and put on his child hat. The mother and the preschooler cuddled and read books together until he drifted to sleep.

As she tiptoed out of the room, she wondered where his strong will and determination came from. After all, he was just a rookie. Maybe he takes after his mother, she thought. She smiled and headed downstairs to meet the onlookers in her little old town and wielded her weapon for the next standoff.

Two more children to go, she sighed, clutching the weapon. "Go ahead, make my day."

Superheroes and Sidekicks

Over the years, I have been exposed to a wide variety of superheroes. My oldest son loved "Justice League"--Flash was his favorite. He had the Flash costume, and darted around the house like lightning. The Justice League was a team, each doing his or her part to solve the problem—to save the world.

My youngest now loves "Star Wars." He carries a light saber on his belt loop. He watches light saber videos on YouTube. He says he's from "the dark side" (watch out). In "Star Wars," the apprentice learns alongside the master teacher until he is ready to go out on his own.

Sometimes people call moms "superheroes." And we are, quite frankly. We are master teachers, or at least trying to be. We have apprentices at our side—little "sidekicks."

I have three "sidekicks" or apprentices. Two of them are getting along nicely, becoming more independent every day. They're soaring and flying in new ways all the time. I love watching them venture out, but I'm there to catch them if they fall, too.

My daughter is 12, but she's still my sidekick in many ways. Having autism means she gets to be an apprentice a little longer. And that's okay.

When we go places in public, and there are too many people, and she feels scared, I come to her rescue. I speak for her, I help her, I teach her. She stays by my side like a loyal sidekick--she trusts me.

At school she has a 1:1 aide. Her aide is like her master teacher--my daughter is learning the ropes right along side her. Sometimes her aide lets her fly solo, but she's always there to catch her fall. That's what superheroes do.

At church youth events, she is my sidekick, for now. She's venturing into new territory and needs someone to help her learn. I'm happy to be her master teacher. But I know, with time, she will rise to a new level.

She's had the help of superheroes, master teachers, all along the way. Therapists, aides, doctors, friends, siblings, parents. Her own little "Justice League" working alongside her to save the world--to save her world--to make her world safer.

Superheroes and sidekicks. The master and the apprentice. They work together.

You want to know something, though? Sometimes I don't feel like the superhero--I think my daughter is. She's facing the world in a way I can't possibly understand, and that makes her braver than me. She's like my master teacher, and she's my superhero. She's taught me more than I could possibly teach her. But I'll fill in the role of "superhero" until she realizes she's had superhero powers all along. One day she's going to fly away and take the lead, and I'll be the one left behind.

No matter what, we'll always be a team, and I'll be there to catch her when she falls.

Wednesday Blog Link-Up!

Welcome to another week of blog link-up on The Special Reds! Please add your page here so we can all connect!

 

 

Transatlantic Tuesdays #4: Take the High Road

Transatlantic Tuesdays is a weekly letter writing series between me (in the US), and Maxine (in the UK), blogging from Down in Front, Please - sharing our journeys in the form of letters to one another. Previous letters are listed at the end of the post.


Dear Maxine,

I loved your response to my last letter, and how you said this: "We simply don't live 'negative' with Rukai. Don't feel it, don't allow it, don't tolerate it. We fight it off like teenage acne."

Brilliant, simply brilliant. Except, it made me think that, if you are fighting it off like teenage acne, this negativity must come back often, since, we all know teenage acne isn't a solitary case. You must keep that acne cream handy in the form of positive, uplifting thoughts about your child and his upbringing, and wield it like a personal sword in defense of your son. I'm so glad to hear it.

And my jaw literally dropped when I read your story about the nurse comparing her son to yours. The nerve of her even saying that your son could be anything less! Time for her to go back to nursing school, or choose a new career. It reminds me of an episode of "Call the Midwife" that I watched a few years ago about a mother who gave birth to a child with spina bifida. In the early hours and days after his birth, she cannot bring herself to love him because he is different, and it's her wonderful, caring nurse who coaxes her into coddling that precious infant by saying, "Life is never without hope." I wrote about it here, because it touched me so. If only your nurse could have been so understanding.

And a big happy 4th birthday to Rukai! I'm sure many of his "challenges" will continue to be met as the years go by. So glad you enjoyed your birthday trip with him.

Now on to answer your question:

How do you deal with the unexpected when things go 'wrong' in your world? Either with kids' issues, family issues in general, looking after yourself, etc. When something threatens to derail, how do you get back on track?

Have you been spying on me? Do you know that this is like the number one thing I struggle with, and have struggled with, ever since become a mom and wife? I think it's quite natural to wish that things would always go smoothly in life--to wish that there were no worries, no pressing issues. I can plan and prepare all I want, but I can never plan for the unexpected. Life is what happens when you are busy making other plans, right? I feel like I've heard that somewhere...

I think my answer could be very similar to yours...to not view the things that happen in life as "wrong," but just part of life. The word "wrong" has such a negative connotation--does anything ever really go wrong? Or does it just go in a different direction, one that you hadn't thought of before? If you view things that derail you as wrong, you must be on the wrong path...the bitter path.

I walked down that lonely, bitter road for a while. I let all the difficult things thrown at me as a mother take me off the yellow brick road and into a path of self-destruction, where I was in a constant state of anger and upset. I felt like life did not turn out the way I planned it, at all. I walked down this path for a few years, after my two oldest were born, and I'm sure I wasn't a very pleasant person to be around. During this time, my husband and I had some health challenges of our own, and adding that to the giant pile of "stuff" we were already dealing with, it felt like we'd never see the light of day. As I said to my friend recently, when she was describing her current issues within her own family and what lie ahead for them, "Do you ever wake up sometimes and think, 'is this really my life?'"

Life is going to happen, full speed, and you have to be willing to jump on and take the ride. Trudging down the path of bitterness means you aren't living your life to its fullest--you're just hiding in the shadows of what could be a bright and glorious experience. Even with those same challenges, you can hop off that road of bitterness and onto the road of betterness.

When my third child was born with challenges after praying every day for a normal, healthy baby, I had to do some soul searching in my hospital room. Obviously, my children are giving me a choice: will I take the high road—the better road? Or the low road—the bitter road, of life? Is it still possible to feel content, at peace, when things turn out differently, or don't go the way you were hoping or expecting?

Yes, I told myself, holding my newborn son, who now faced a bumpy road of doctor visits and surgeries ahead of him. Yes, I have to take the better path—my kids are depending on me. I want them to see a happy, positive person so they can meet the challenges they will face with the same attitude. I would never want them to feel how I felt on that lonely bitter path. I have to do it, for my kids—they deserve the brightest future imaginable.

So, have things gone "wrong" in my life? No, but I have chosen the wrong path. I'm so glad I've made it back to the safe road that leads to hope and fulfillment--that leads to eternal joy and happiness.

Maxine, I know you are very sick right now, and have been for some time. Please find that spark of hope and meaning in it all. And if you are feeling up to it, I would love for you to answer this question in your response next Tuesday:

Speaking of challenges, what has been the greatest challenge Rukai has faced thus far, and has he overcome it?

Sincerely,

Kera


************
 New to #TransatlanticTuesdays? Catch up on what you've missed here:

Letter #1: --Maxine
Letter #2: --Kera

Letter #3--Maxine

"I Love You" Rules Our House

It's February, and the month in which love is celebrated.

For many parents with special needs children, hearing the words "I love you" can mean the world. There are countless inspirational stories written by parents about how many years they've waited just to hear those words from their child, who before was nonverbal or lacked language skills. I have to admit, I get teary eyed reading them. It is a wonderful thing to hear your child say these magical words.

But can it be possible to actually loathe them? Let me tell you a funny little story about my daughter...

My 12-year-old is on the autism spectrum. When she was around 7 or 8 years old, she began displaying vocal tics (and motor tics, or movements) and mild Tourette's was added to her list of diagnoses. She seemed to have certain words she would repeat often, and movements as well. It was like she had an electrical current running through her body, and she couldn't feel better or release that energy until she said certain things or moved a certain way. That's the only way I can describe it.

Over the ensuing years, she had many different vocal tics that would come and go, but one that has stuck like glue is "I love you." (I first wrote about it on my own blog here.)

A typical conversation with my daughter would go like this:

J: "Mommy, can I have some juice?"

Me: "Sure, J."

J: "I love you."

Me: "I love you, too."

Immediately following any question/comment/suggestion made by her to me (and sometimes her dad) she says, "I love you." Sweet, right? But do you know how much J talks to us during the day? A LOT. And if I don't say "I love you" back, she cannot go forward with anything else. I must reply to allow that electric energy to be released.

For a time, she was saying this to her younger brother also, and if he did not respond the first time, she would repeat with more urgency, "I love you!", waiting for a reply. If it took a third time, well, she'd be full-on angry, yelling "I love you" and even resorting to hitting him for an answer. I never thought I'd have to break up fights between my kids because one of them was saying "I love you" in a mean way! Oh, the irony!

I love that she feels the need to say "I love you" at the end of every single conversation with me, but I have to be honest, hearing it so much does wear on my nerves! Yes, I know she really, really, really loves me. But is there some underlying reason that she's saying it so much to me? Does that internal energy of hers sense that I don't always love her?

For a while, after this phrase became very commonplace, I began to second guess myself as a parent. Maybe she's saying this so much because she feels like I DON'T love her? Maybe she's saying it more like a question, to see if I really do love her and will respond the same? Maybe I'm not showing her enough love, and she has to remind me often that she loves me so I can remember how much I love her, but don't say it as much?

There was a time, almost 2 years ago, at a special church broadcast with other moms and daughters, where I really felt the spirit of the evening through the wonderful speakers and I felt an overwhelming joy in just being her mother. I could feel the love for her more than I'd ever felt before. And she must have sensed it somehow, because during the entire meeting, she kept saying "I love you" to me over and over again, and I replied every time, not with aggravation or an eye roll, but with tears rolling down my cheeks. In fact, I didn't want her to stop saying it. She doesn't like it when I cry, either, but in that moment I think she understood. I will always cherish this memory.

Regardless of how I feel, Julianna is keeping the love in our family alive. Perhaps she knows how challenging things can get in our household, and it's her little way of reminding all of us just how much she loves us. Yes, at times, I still get frustrated hearing it every 10 minutes, and yes, I've come up with ways to make replying to her easier when it becomes too much (signing "I love you" with my hand) but you know what? If it's the one thing she's going to tell me all day, every day, for the rest of her life, I'm happy. She loves me, no matter what, no matter how much I mess up, or get upset, or break down. Her love will keep me going.

This post originally appeared on www.snapvoices.blogspot.com.

But Julianna Doesn't Have Red Hair, Mommy!

Sometimes Nathan says really cute things, and I want to record them in more than just a little Facebook post. Putting it on my blog means it will be more easily accessible. Today we had one of those moments that I want to remember.

On the way home from picking him up from school, I asked him what color his hair was. I like to ask him this to see if he will say "red" or "orange."

Me: Nathan, what color is your hair?

N: Uhhh....ORANGE!

Orange. Of course. Each of my redheads has always said orange, because it IS orange. Not red. Why do they call them redheads, anyway? I decided to ask more questions.

Me: Orange? Okay, it is orange. What color is Blake's hair?

N: Orange!

Me: Yep! His hair is orange, like yours. And what about Julianna?

N: Uhhh.....BROWN!

Brown? Really? That was a first from him.

Me: Brown? No...her hair is orange, like yours, silly!

N: NO! It's BROWN!

Me: Hmm...okay, Nathan.

We made it to the kids' school and waited for them to walk to the car. When he saw Julianna approaching with Blake, he yelled, "See, Mommy? Julianna has BROWN hair!"

I looked at that tall redhead walking toward us, her red curly hair shining in the sun, and had no idea why he thought it was brown. It is really thick, but other than that, I'm not sure where his color confusion is coming from. Regardless, I think it's cute.

Julianna got into the car, and I told her that Nathan said her hair is brown, not orange or red.

Julianna promptly corrected him: "No, Nathan, my hair is RED, not BROWN! Got it?" She likes to say "got it" lately. And I'm glad she's reached the level of maturity where she knows her hair is red, even though it's actually orange.

N: No, it's BROWN!

J: No, it's RED!

Me: Okay, that's enough. Let Nathan believe what he wants.

The conversation turned to school day topics and that was that. It makes me wonder, though, if I asked Nathan next week the same question, what he'd reply. There's no denying my kids each have red hair!

Wednesday Blogger Link-Up!

Welcome to The Special Reds! I am a stay at home mom to three adorable redheads. Each of my children has a unique diagnosis. I'm glad you are here. Please share your most recent, or favorite blog post so others can network together! Please add a comment so I can meet you, and thanks for stopping by!

18 Tips For Preparing For an IEP Meeting

I've been attending IEP (Individualized Education Plan) meetings since 2007. It started with my oldest child, and now my youngest has an IEP for speech therapy. From my first IEP meeting to my most recent, I have definitely learned a lot. I'm by no means an expert, but I wanted to share some tips that might help you as you prepare for your next IEP. Preparation is KEY. (Please be advised, the laws may vary from state to state.)

 1. Talk to the teacher, aide, and anyone that works with your child BEFORE the meeting.
Make sure you are on the same page with those that associate with your child. You want to prevent as many surprises as possible.

2. Know what kind of IEP meeting it is--triennial, goal setting, amendment, etc.
This might sound silly, but make sure you know why you are going! There are different kinds of IEPs. You have to know what is being discussed so you can prepare properly. Read the form sent home to you to sign carefully. Call the school if you are unsure.

3. Notify the team ahead of time if you plan to record the meeting.
You must give 24 hours notice, in writing, if you plan to record. By law you are allowed to do this. I've done it before, and it can feel a little intimidating, but you never know what might be said, and often, you need to review every word.

4. Go over your child's most recent IEP and goals.
Pull out the most recent IEP. Read the teacher's notes on each goal. See if progress has been made, or hasn't. Make sure you know what the current goals are and if he/she is reaching them.

5. Know who's coming to the meeting.
Another simple one, but important, too. The form sent home should say who will be attending. Call if you want to know for sure. You really need to know who will be there so you can be ready for possible confrontations or situations that might arise. Knowing that the special education director for the school district is coming really changes how you prepare.

6. Know your child's current levels in school.
What grade level is your child reading at? Where is he/she in math? How about spelling? Physical education? Is he/she progressing, or digressing? These things are important to know before you go to a meeting so you can help make appropriate goals and revisions. Don't leave it up to the team.

7. If time, read through all of your child's IEPs and reports before the meeting.
This might seem like a daunting task, but sometimes it's good to go over everything in your child's file. (And if that's hard to do, start by organizing the files chronologically--all types of files). You will begin to see the "whole picture" of your child. Your IEP team does not do this--only you can. Doing this can help you really see the growth of your child over the years and find gaps that need to be filled.

8. Have some goals in mind to add for your child.
Come with a list of goals yourself--don't just rely on the team. This is your child, and you can add valuable insight. Don't be afraid to disagree with a goal that's been made. You are the parent, and you have the final say.

9. Read up on the special education laws.
Part of your job as a parent of a child with an IEP is to know the laws related to special education. Not every teacher or principal or specialist will know all the laws, so it's important that you are knowledgeable. You need to make sure they are following them, and be brave enough to say so.

10. Know what your child needs for services.
Is your child getting all the needed services to succeed? Have you asked for services, or just gone along with what your team says? Talking to the teacher or aide beforehand can be a good help for this one. Know what services are available and be bold enough to ask.

11. Bring an advocate or lawyer if needed.
I hate to say it, but this one is a given. If you are going into a meeting where you are requesting new services that would require a large amount of money from the district, talk to an advocate for advice. Every school district should have local agencies that help with this. I've been able to talk with many experts over the years for free. Do your research, and bring someone if you know this meeting can't be tackled alone.

12. Get your paperwork organized.
Going to IEPs and medical doctors means you have lots of paperwork. Getting organized before the meeting will really help clear your mind and give you a positive, fresh outlook. (I'm still working on this myself--I will get there!)

13. Bring any current medical reports that will help your school make goals.
If your child has seen a specialist or doctor since the last meeting, and this information can help your team make better goals, bring it. There is nothing more valid than a piece of paper signed by a medical doctor.

14. If you have other children, consider getting a babysitter for the meeting.
These meetings are no joke. The times I've brought my youngest to a meeting, it did not go well. I was too distracted, and it distracted the team, and I felt like I was doing a disservice. This one is really a personal choice, but the meetings go so much better when you can focus. They are already stressful enough!

15. Read a good book to get you prepared.
There are lots of resources out there to help you prepare. A great website is Wright's Law. There are support groups. There could be other parents in your area that you can talk to. There are countless books available, so read what you can.

16. Dress for success--you are representing your child.
Look the part--this is a meeting with educated professionals. Wear nice pants (or jeans) with a nice shirt. No grubbies or yoga pants. This is for your child--you are his/her representative.


17. Bring tissues and (for the moms) wear waterproof mascara.
At these meetings, you mainly go over your child's current levels and progress, or lack thereof. It's tough to swallow. I'm notorious for crying at every meeting. There's usually a box of tissues on the table, but just in case, bring your own. And unless you like mascara running down your face in front of the team, wear waterproof, or none at all. And don't be afraid to cry--it's okay.

18. Make sure you are confident--you have the final say.
My final tip would be go in there with an air of confidence. You are the parent--you are in charge. Your team can make suggestions, but in the end, you have to approve them. If you don't sign, it doesn't happen. And don't sign that IEP if you don't agree with everything! Take it home and tell them you will review it and bring it back. They don't always like it when parents do that, but do it anyway.

I know IEPs in general seem very overwhelming and intimidating--believe me, I wish I didn't have to go through all of it! I wrote a post last year about this very thing after I attended a Wright's Law conference. But they are a necessary part of your child's educational plan now, and as parents, our job is to help our children prepare for the future. So be prepared for those IEPs, and remember that your child's greatest advocate is YOU!

NEW: Wednesday Blog Link-Up!

I've seen these link-ups on other blogs, and I think they are a great idea. I'm averaging around 200-400 views a day on my blog, so I thought it would be fun to try this. Tell your blogger friends! It's a great way to connect with other bloggers and read other wonderful blog posts, all in one spot! I will leave it open for a full 7 days and start it up every Wednesday! I look forward to connecting with you all!

An InLinkz Link-up

Transatlantic Tuesdays: Letters from Across the Pond

Right before Christmas last year, a war began brewing in a closed group for writers of a very popular disability website. And as is typical, when there is a bad thing going, good will always come out of it. Well, much good came out of this war-like conversation: a wonderful bond and connection between parents who felt strongly about being advocates for their disabled and sick children, who advocate mainly through their powerful words. Some of the parents and I began private messaging during this time, and decided to form a closed group where we could all support one another without any fear of criticism. This group is flourishing and helping and supporting, and encouraging those parents to continue writing despite what other opinions are floating out there. And those same parents and I decided to start a blog where we could publish all parents' stories. We named it SNAP: Special Needs
Advocates and Parents. Now you know the history behind SNAP, and I strongly believe that without that little battle before Christmas, none of this would have happened.

And in the early days of our new group, I met some amazing new parents who had all been writing for that popular website. We got to know each other, and I must say, I feel like we are all family now. One parent in particular would share her blog posts and published articles and I always felt touched by them--her writing spoke to me. Maxine, from England, is a mother of a child with Down's syndrome named Rukai, and she blogs at Down In Front, Please. She also has red hair, which is something I of course admire. But more than that, I admired her boldness, her concise yet descriptive language, the literary tone she weaved through every piece, every sentence. Her words move me--to action, to pondering, to betterment.

I continued to be drawn to Maxine's words, and asked if she would like to collaborate with me somehow. After about a week of brainstorming, we decided to write letters to each other, letters that would dig below the surface of the issues we face every day. Letters that show how similar we are as parents, despite how different our children's diagnoses are. And so, "Transatlantic Tuesdays: Letters from Across the Pond" was born.

This was her letter and introduction to the project. Before you continue reading, click that link. Her words are powerful and thought-provoking, to be sure. They respond to an article of mine published here.

Have you read both links? Good. You are ready to read my reply to her fabulous question posed at the end of the letter:

"Now if you're up for it, how about telling me what exactly is buried in that ice?"

Dear Maxine,

I'm so elated that you read my recent article. You say it seemed like the tip of the iceberg, and to be completely honest, it really was. With only 500 words to pen it was nearly impossible to delve into the depths of the despair that was in that singular moment of my motherhood. So yes, I chopped and chiseled my words down to what I thought were the most meaningful to share, because that's what I do! But what were in those "teardrops of hopelessness" that drifted into the wind?

Well, I'll tell you one thing. Growing up in a family with very typical children, I never imagined for one second that I'd have a child with a disability. It was something that other people dealt with, but not what I would deal with. Does anyone ever consider it might happen to them? Imagine what it would be like, or how they would feel? I never did, and motherhood came at a young age for me. I fully expected to have a normal, healthy child, because that's what I knew growing up.

However, there were certain instances that I think prepared me for this life. I remember going to a facility for handicapped and disabled children and young adults when I was about 14 years old. Each of us was assigned a person from the facility to care for while we were there. I will never forget the face of the young man I pushed around that day in his wheelchair. His dark brown hair, his permanent smile, his body movements when he was excited. The employees tried to teach us how to interact with these severely handicapped individuals. I did my best at such a young age. I talked to him and knew he was listening. I patted his shoulder and tried looking into his eyes.

At the end of the visit, we all gathered in a large room and an employee led us in singing songs together. Watching these disabled people respond to the music was overpowering. They swayed, they smiled, they laughed. Even now, when I think of that moment, I get goosebumps. I remember he grabbed my hand as we all stood in a circle. I felt my soul connect with his. Human touch is a powerful thing. I'm so glad I got to experience this as a young person. No doubt our youth leaders were divinely inspired.

Flash forward to the year 2004. I'm a new mom to a cute redhead. I've just been told by a neighbor that she might have autism. I'd done everything I could to push that thought out of my mind. She was too young to be diagnosed, anyway. I told myself that she would grow out of these behaviors. I'd researched autism and concluded that she didn't have enough of the symptoms. But my fears were always close to the surface. Fear is a potent emotion...

Because she wasn't walking by her 18-month checkup, her pediatrician was concerned. He gave me the contact information for an early intervention group in town. I had no idea what this meant, but thought I'd follow my doctor's advice. We were moving out of state soon anyway, so it wouldn't be a long commitment.

I arrived at the parent/child group for early intervention. All the parents were doing crafts with their kids at little tables. I looked around the room at the children and saw visible handicaps. Visible syndromes. Noticeable behaviors and delays. I didn't even stop to notice the smiles on the parent's faces. Their loving and genuine concern for their children. All I could see was that these children were different. Her pediatrician had placed MY CHILD in this same category. Why did he do this? Why did he think my child was different like these children?

I wanted to leave that room soon after I arrived. In fact, I don't really remember how long I stayed. I probably made up some excuse and snuck out of there, clutching my precious child to my chest.

Why did I feel this way? How could I feel such a strong connection to a handicapped boy as a teenage girl, but feel the complete opposite about my own child? I obviously understood the impact that a precious soul could have on my own--why couldn't I feel that with my own child?

Here's why--here's what's buried under that ice, that is usually chiseled away conveniently as to not offend or demean. My daughter is MINE, and I wanted her to be perfect, not broken somehow. Perfect, not damaged or needing repair. Perfect so I wouldn't have to worry. Perfect so I could keep all the same hopes every parent has for their children. Perfect so I wouldn't have to be broken, too. Oh, how wrong I was, and how strongly fear had a grip on my perception at the time...

But life is not about perfection. It's about being broken, over and over again, and finding the strength to sweep up those pieces and put them together. And when those pieces are glued together, we might look at ourselves and see those cracks, those visible scars, and think, why can't it just be easier? Ease does not lead to growth, only hard things do.

Back in 2004, I didn't know what the future held. I didn't know that my daughter eventually would be diagnosed with autism. I didn't know I would have a son with a frightening blood disorder, or another son with a birth defect. I didn't know how broken I would feel as a mother. But what I do know, now, is that I've always been able to gather up the pieces and make myself whole again. There are probably many cracks beneath the surface, but on the outside, to the world, I try to appear strong. It's all I can do without completely falling apart, which I do often, in quiet moments to myself.

And I know now that being broken doesn't mean anything at all. We are all broken and damaged. We all need repairs. We will always have worries, and our dreams will not always come true. But that doesn't mean we can't make something beautiful of our lives despite the brokenness. It's okay to be broken, because it means we are being shaped and formed into who were were meant to become, much like an ice sculpture has to be broken and chipped away to create something beautiful.

So, Maxine, that's what's buried under the ice, what you might find below the tip of the giant iceberg of my life to my very special children. And now I have a question for you:

How have you turned the negatives thrown at you regarding your son's diagnosis into positives?

Your friend across the pond,

Kera