Okay my title doesn’t make sense.  There’s no such thing as planning the future when you have a child with special needs.  The future is 2 minutes away.  Sometimes the future is 37 seconds away.  I would venture to guess that any parent of a child with special needs might have a slight panic attack when thinking about the future with their kiddos.  I know I do.  So many people have asked me what we’ll do for Emma’s school after her 2 years are up at her current school.  And of course I’ve asked myself the same question.  It’s a hard answer.  I actually can’t answer, so I don’t.

Last week we took Emma to see a peds dermatologist at PCH to take a peek at a mole she’s had since birth.  He gave us good news in that it didn’t need to be removed.  We were thankful, because removing this mole meant general anesthesia for her.  And that’s always tricky with her.  Anyway, he gave us changes to monitor, should they occur.  And then he was very direct and said that we’d be able to closely monitor the mole as she would be living with us indefinitely.

It’s a tough pill to swallow.

Our daughter will live with us indefinitely.  Chances for marriage are slim.  Chances for children are slimmer.  She may not carry a full time job.  Or go to college.  I’m of the philosophy “never say never”, but I’m also realistic.  I don’t need to jade myself into what may be.  Because truthfully I don’t know.  But like I said, I’m realistic.

We’ve thought about the future in that we know where we want to live.  We’d like to buy my parents house and give it a facelift.  There’s a great backyard.  It’s a nice size.  Big enough to build a little guest house back there.  That would be for Emma.  It’s what I think about.

“I think the heart just gets broken — wide open.”

-Amy Upchurch (on how becoming a special needs parent changes a person for the better)

I was joking with my friends earlier, actually I was whining a bit at first, and then started joking, and before I knew it they had me cracking up. I was telling them how I had been feeling PMS-y (sorry to my 6 guy readers), and not the crampy type but the moody type. But it is lasting for weeks. And I’m a little over it. I was telling them that I thought that parents of kids with special needs should get free prescriptions for Zoloft. In a perfect world, when your child gets diagnosed, they also hand the parents a prescription. Raising a kid with special needs is not easy.  It’s a huge roller coaster where you have your ups, but you also have a lot of downs.  Part of my problem is that when I feel like we’re going through a rough patch, I see myself as a bit more “deserving” than I should.  That can get me into trouble with the credit card or- let’s be honest- food.  Who’s with me here?  But I have a plan.  And my friends were not short in offering up their ideas either.  Before long it was a very funny and idealistic conversation.

Before I knew it, my friends chimed in with free massages…free wine…free shoes and handbags, and lastly, free first class tickets to Paris (of course one of my favorite cities. like. ever.). Now, I thought they were getting a little out of hand. Free first class ticket to Paris? A complimentary Gucci bag? Let’s not kid ourselves. But I wouldn’t be opposed to a hefty discount on the aforementioned items.

Along with the diagnosis (or diagnoses, as we have found out) and free prescription for Zoloft, they should issue an ID card. Or perhaps, you bring in your child’s diagnosis/es signed by the doc, to let’s say the DMV. And they give you a special ID. A “Parent of a Child with Special Needs” ID. Complete with your picture. Oh wait…the more diagnoses, or the more severe the diagnosis, the bigger discount you get. I feel like Emma has enough diagnoses under her belt, I could save a pretty penny under my new plan.

Alas, I’m living in a pipe-dream. I won’t get my favorite Tory Burch bag at 50% off. No trip to Paris in first class for the price of coach.  However, I did treat myself to a iced grande skinny half-caf caramel macchiato today, and that should count for something! And I did take a bike ride to the grocery.  I felt very European.

But I think I have a good idea, so if any of you know of someone “higher up”, maybe you could pitch my idea for me?

If you had an ID card as a parent with a special needs child, how would you use it?

Will I ever have enough?

A week ago we had a few half-days due to Parent Teacher Conferences.  I took that opportunity to have 3 of Emma’s friends over for a playdate.  These 4 girls are just the sweetest things ever!  They all have special needs and the 4 of them stick together like bandits.  They are special little girls indeed.  The moms thought I was crazy for hosting a playdate.  I couldn’t have been more excited.  It was so adorable to watch them play together and interact.  Yes, they were loud.  Yes, they were goofy!  But I loved every minute of it.  I envisioned slumber parties in the future.  And I embrace slumber parties in the future.  It was a taste of normalcy for Emma…something that I always want for her.  I decided a “group activity” might be a good idea so we baked cupcakes Chocolate with pink frosting, of course!  Take a peek at these adorable pictures!

Everyone, no matter the circumstance or history, has days where they are just struggling.  Struggling to see the silver lining, struggling to think anything positive about themselves.  We all have those days.  Would it be a stretch to say that perhaps parents of children with special needs have those days more than others?  Maybe.  Maybe not.  I do know that when I read this list, I immediately felt a little bit better about myself.  This list is a nice reminder that while our struggles are many, we grow and learn constantly.  I think it’s true.  Tell me if you agree.  I found this list from Apraxia Mama’s blog.  And she found it over at Disability Resource Exchange.

Ten Great Traits of Parents of Children with Special Needs

10. Camaraderie: meet someone new + find out they have a child with special needs = instant friend.

9. Sense of humor – it carries us through even the worst of days.

8. Appreciation – for what’s truly important in life.

7. Determination – a “do whatever it takes” attitude.

6. Vigilance – often anticipating and heading off potential problems before they happen.

5. Empathy – for others facing challenges in life, whatever those challenges may be.

4. Intellectual prowess – from reading all those research studies!

3. Resourcefulness – more often than not, we find a way or make a way.

2. Strength – mental, emotional, and physical — and stamina, too.

1. Courage – we face challenges head on that we once could never have fathomed.

There are lots more great traits of parents of children with special needs – can you add to the list?

I received this email about 11 months after Emma was born. I was searching for it today to pass on to a new mom in the group. She is struggling with issues like guilt and being alone. I thought I’d post this on my blog because these words are inspirational in general, but especially if you have a child with special needs.

Every couple months we start doing this on this list -where we brainstorm a multitude of possible thingsthat may have caused this rare condition of SOD/ONH and talk it out. I know we all want so much to be able to blame something or someone, but in reality what does its matter? If they ever figure it out the only thing we will have is the knowledge of what happened – there won’t be a cure or the power to change it. In the end things will still be the same for you and your child.

I want to offer you a different way of looking at it. What if you DIDN’T do anything wrong, in fact YOU did everything right! Yes Right! Maybe these beloved children were not supposed to be born into this world, maybe they were all supposed to be miscarriages or stillborns and because of all the medical technology and better health care they were able to overcome. Maybe you ate well, exercised, got fresh veggies,drank water, took your vitamins, went to all your doctor appointments, loved and wanted them!, etc. and because you did – The impossible happened! This wonderful child of yours survived – beat all the odds!  Take a look at all of the babies born so very early and the long list of birth defects that keeps growing. Maybe its not a sign the world is worse. Maybe it’s a sign that they can do so much more medically to assist them and save them. It’s a sign that we are actually getting healthier. Take a look some cancer rates are leveling off and people are living longer!

I don’t think finding the cause will change the world; I believe the people on this list will change the world. Look how extraordinary you all are! We are a list full of people, who exchange ideas to help each other, we are raising our children in our homes and caring for them the best that we can, we are making the rest of the world take note and change to accommodate. We are changing people’s attitudes about what it means to have a disability and how the personwith the disability is still a beautiful person like everyone else. We are teaching the world that people have VALUE.

When I look at this group I see extraordinary people from all over the World!  I see moms, dads, grandparents, etc. committed to raising children they love. They are leaving a legacy. I am extremely touched and blown away by all the adoptive parents who have given of themselves to care for a child that others didn’t want to love. What a selfless act, I know you don’t receive applause from others in thisworld, but I will be your one woman cheering section!  I see grown SOD/ONH adults who share their life stories and challenges with us, trying to give uswisdom, insight and even comfort in the future of our children. They are an encouragement to me! They are just like all of us wanting love and wanting to beloved by someone. They want the best out of life justlike us – we are all the same and we all walk in each other’s shoes.  Our success in life won’t be measured by fame or money- it will be measured by each of our children and by what we leave in them and others – that’s our legacy.

I do go back to read this email every once in awhile when I need a pick-me-up.  It works.  I encourage you to print this out for those days when you have that dark cloud looming above.  Or to copy and pass it on to someone you may know who needs some cheering.  This is a tough road we walk and any time you can cheer yourself up, take advantage!  And breathe a little easier knowing that we are doing an amazing job!

This was the first time Brett and I went out of town while the kids were in school, and stayed somewhere other than home.  Last year, if I remember correctly, we took an extended weekend away and Brett’s parents stayed at our house and got the kids off to school.  I think that’s how it happened.  Anyway, this weekend was another extended weekend, but the kids stayed at my parents house the whole time.  And I think that made the difference.

It’s not secret that Emma has a slight problem adjusting to change. She’s very much craves and needs routine and consistency.  And while the routine and consistency of the school day stayed the same, it was everything else that changed for those 4 short days.  And it made all the difference.  We have been paying for that change going on 5 days now.  She’s been grumpy, irritable, moody, and just plain not nice.  And it’s not only at home.  She’s been defiant at school, which typically isn’t like her.  I feel bad for her because of course she doesn’t mean this.  I think she’s just confused and that confusion and frustration comes out in the form of temper tantrums (notice ‘tantrums’ is plural!).  It makes me wonder if going on vacation during the school year is worth it.  We have one more trip coming up, sans kids, during school year.  We’ll be in Florida for 5 nights for a friend’s wedding.  And my kids are scheduled to stay with my parents again.  We’re rethinking that strategy, as it is clearly not working for Emma, and in turn, for us.

Fortunately my mom offered to stay here at the house during the school week while we are gone.  I think that will make a WORLD of difference.  Emma will be able to relax in her own environment.  Often times, when she needs to “unwind” she will simply go to her room, crawl in bed, and read books.  To know that she’ll be able to do that while we’re away will ease my mind tremendously.  I know it’s an adjustment for my parents, especially my mom who works outside of the house.  And I’m grateful that she has graciously offered to stay here to help Emma’s adjustment.  During the weekend will be a different story.  I think they’ll spend one night at Grandma and Grandpa’s house.  And that will be a nice change for them, and probably a much needed break from my mom.

To end, we are so blessed that we have both sides of the family here to help us.  And they are so supportive of our little family of 4!  Thanks, folks!!

My "typically" happy camper

Knowledge Safari is a social network catering to parents, grandparents, aunts/uncles, siblings, friends and teachers of children who have special needs and those living with special needs. On their blog they discuss hot topics and raise awareness about various special needs.  And on Friday, they spotlighted (is that a word?) SOD with a link to my lil’ ol’ blog!  How special is that!  You can read their spotlight right here.  They also gave a shout out to my good friend, Bree, whose daughter Avery also has SOD.  You can read about Avery’s story here.  I met Bree and her family in Chicago last summer when Emma and I attended the MAGIC conference.

Thanks to Knowledge Safari for helping spread the word!!

Many people may not have heard this story.  However, many people who are raising a child with special needs may have heard of it.  It’s another analogy…a beautiful one.  Similar to the Going Greek story I posted awhile ago.  This story has been around a bit longer…and because I love to travel, I love the analogy of this story.  I hope you enjoy it too!

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.