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.

I was never in a sorority.  In fact, my University didn’t even have a Greek life.  For real.  It was is a very small Southern Baptist University located in the ghetto.  Anyway, no alcohol on campus, no dancing (heaven forbid), no co-mingling in dorms except for open dorm night (once a week for 2 hours where “all 4 on the floor” was the rule).  However, that’s not the point.  The point is that my friend (whose daughter also has SOD) sent me this story.  It rings so true for me.  I hope you enjoy it.

Thoughts of a Mom
By Maureen K. Higgins

Many of you I have never even met face to face, but
I’ve searched you out every day. I’ve looked for you
on the Internet, on playgrounds and in grocery stores.
I’ve become an expert at identifying you. You are
well-worn. You are stronger than you ever wanted to be. Your
words ring experience, experience you culled with your very
heart and soul. You are compassionate beyond the
expectations of this world.

You are my “sisters.” Yes, you and I, my friend,
are sisters in a sorority. A very elite
sorority. We are special. Just like any other
sorority, we were chosen to be members. Some of us were
invited to join immediately, some not for months or even
years. Some of us even tried to refuse membership, but to no
avail. We were initiated in
neurologist’s offices and NICU units, in
obstetrician’s offices, in emergency rooms, and during
ultrasounds. We were initiated with somber telephone calls,
consultations, evaluations, blood tests, x-rays, MRI films,
and heart surgeries.

All of us have one thing in common. One day things were
fine. We were pregnant, or we had just given birth, or we
were nursing our newborn, or we were playing with our
toddler. Yes, one minute everything was fine. Then, whether
it happened in an instant, as it often does, or over the
course of a few weeks or months, our entire lives changed.
Something wasn’t quite right. Then we found ourselves
mothers of children with special needs.

We are united, we sisters, regardless of the diversity of
our children’s special needs. Some of our children
undergo chemotherapy. Some need respirators and ventilators.
Some are unable to talk, some are unable to walk. Some eat
through feeding tubes. Some live in a different world. We
do not discriminate against those mothers whose
children’s needs are not as “special” as our
child’s. We have mutual respect and empathy for all the
women who walk in our shoes. We are knowledgeable. We have
educated ourselves with whatever materials we could find. We
know “the” specialists in the field. We know
“the” neurologists, “the” hospitals,
“the” wonder drugs, “the” treatments. We
know “the” tests that need to be done, we know
“the” degenerative and progressive diseases and we
hold our breath while our children are tested for them.

Without formal education, we could become board certified in
neurology, endocrinology, and
psychiatry.
We have taken on our insurance companies and school boards
to get what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative
communication devices in special education
classes and mainstream schools for our children with
cerebral palsy. We have labored to prove to
insurance companies the medical necessity of gait trainers
and other adaptive equipment for our children with spinal
cord defects. We have sued municipalities to have our
children properly classified so they could receive education
and evaluation commensurate with heir diagnosis. We have
learned to deal with the rest of the world, even if that
means walking away from it. We have tolerated scorn in
supermarkets during “tantrums” and gritted our
teeth while discipline was advocated by the person behind us
on line. We have tolerated inane suggestions and home
remedies from well-meaning strangers. We have tolerated
mothers of children without special needs complaining about
chicken pox and ear
infections. We have learned that many of our closest friends
can’t understand what it’s like to be in our
sorority, and don’t even want to try.
We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special
Mother.” We keep them by our bedside and read and
reread them during our toughest hours. We have coped with
holidays. We have found ways to get our physically handicapped
children to the neighbors’ front doors on Halloween,
and we have found ways to help our deaf children form the
words, “trick or treat.” We have accepted that our
children with sensory dysfunction will never wear velvet or
lace on Christmas. We have painted a
canvas of lights and a blazing Yule log with our words for our
blind children. We have pureed turkey on Thanksgiving. We have bought
white chocolate bunnies for Easter. And all the while, we have tried to
create a festive atmosphere for the rest of our family.
We’ve gotten up every morning since our journey began
wondering how we’d make it through another day, and gone
to bed every evening not sure how we did it. We’ve
mourned the fact that we never got to relax and sip red wine
in Italy. We’ve mourned
the fact that our trip to Holland has required much
more baggage than we ever imagined when we first visited the
travel agent. And we’ve mourned because we left for the
airport without most of the things we needed forthe trip.

But we, sisters, we keep the faith always. We never stop
believing. Our love for our special children and our belief
in all that they will achieve in life knows no bounds. We
dream of them scoring touchdowns and extra points and home
runs. We visualize them running sprints and marathons. We dream of them planting vegetable

seeds, riding horses, and chopping down trees. We hear their

angelic voices singing Christmas carols. We see their

palettes smeared with watercolors, and their fingers flying
over
ivory keys in a concert hall. We are amazed at the grace
of their pirouettes. We never, never
stop believing in all they will accomplish as they pass
through this world. But in the meantime, my sisters,
the most important thing we do, is hold tight to their little hands
as together, we special mothers and our special children,
reach for the stars.

My good friend suggested that I write about what it’s like to travel with a special needs child.  I thought that was a good idea…it’s not like traveling with a typical child, that’s for sure!  But, for us, it’s not all that bad, either.  It just takes more planning and organization.  And fortunately for me, that’s one of my strong suits.  I will say this…it gets easier and easier the older they get.  And that’s not necessarily due to her special needs.  That’s mostly due to the fact we don’t have to lug around so much crap!  Bye bye to pack-n-plays, extra diapers, lots of toys, bottles, baby food, etc.  I am so happy those days are behind us!  (can you tell we’ll be sticking with or 2 kids and not adding anymore to our brood?)

However, in place of some of that “crap”, is my son’s nebulizer, the steroids that go into it, his inhaler, nose spray, and everything else allergy/asthma related.  And that’s just for Mason.  With Emma, it’s a careful organization of medication, and making sure not only that we have enough, but that we have extra in case our trip becomes extended.  Since she can’t swallow pills yet, we also take enough oral syringes, Sunny Delight (the sweetest juice to mask the bitter pills), and applesauce for those pills whose contents don’t dissolve (called “sprinkles”, FYI).  And for her shot, we make sure there is enough “juice” for the duration…otherwise we pack another vial.  Don’t forget to add extra needles in case one is defective, and extra alcohol swabs as well.  Oh, and last but not least, her patch.  For without that, our days become really long with a child who is bouncing off the walls and everything in between the walls!

It sounds daunting, I’m sure.  And it was at first.  But like I said, it just takes a little extra planning and organization. A wonderful pill organizer that I use is something similar to the picture below.

So if we go on a short getaway for the weekend, I don’t have to bring the appropriate days. (I found that organizer here.  For everything else, I use labeled gallon-size Ziplock bags.

The other consideration that is always in the back of my mind is the bathroom.  My daughter has a big ginormous fear of bathrooms.  It started when she went potty at an airport that had an automatic toilet.  Well, it flushed on her, of course, and she’s been leery of every public bathroom since, even the ones with levers.  For those situations, when she’s going to have to use a public restroom, I use positive reinforcement or bribery.  I’m not above bribery.  For example, when she and I went to Disneyland in October, I scoured the Internet for tips on potties.  Wouldn’t you know there’s a whole website dedicated to the toilets at Disneyland?  I kid you not!  You can visit it here.  That website saved my sanity!  (an FYI for anyone in my situation traveling to D-Land, in the baby center they have “small” potties perfect for those tiny tushes.  The “cast members” tried telling me that she was too big for them, but I gently let them know she has special needs and wouldn’t use the other ones.  Perhaps next time she’ll be ready for the regular restrooms that are smaller in size with lever flushes (like the ones by the AAA kiosk at City Hall and the ones by Big Thunder BBQ).  Is this sad that I know all this?  Perhaps.  But you know what?  It makes my life and her life much easier.  And she knows that she can’t go on her favorite ride,  Thunder Mountain, until we take a trip to the potty.  Worked for me every time!

Okay, that was a total side track.  That last paragraph wasn’t supposed to be about Disneyland.  And now I just want to go there!  Okay…potties.  Obviously every place we go to won’t have a whole website dedicated to the potties of that place.  So we make sure she potties before we leave, and if possible, while we’re out.  In the car, however, it’s another story.  We set a portable potty seat in a hidden place and she does her business!!  The seat she uses looks similar to this one below.

Convenient?  Not always.  Does it work?  All the time.  And again, it makes life easier for her and for us.  And if we pack really efficiently, we put it in the back of the car for even more privacy.  The baggie comes out, gets tossed, seat gets wiped down, and it comes with a neat little carrying case!  Perfect for the situation.  However, I’m not sure what we’ll do once she outgrows it.  That time is definitely coming!

As far as the rest of the trip goes, I always create a binder for our trip.  It contains all the information on our flights, hotel/s, car rental, and always contains information on the nearest children’s hospital.  That last part is SO important to us, and really I think it would benefit every family to have that information when going on a trip.  We’ve been to several Children’s Hospitals around the country now.  I’m so happy I have had the necessary information with me!

If I forgot anything about travel, or if you have questions please let me know.  I would love to be able to help people out with simplifying their travels!

What travel tips do you have to share?

Our feelings…put to song.

Quick question…how many of you watch Desperate Housewives?  I’m guilty…I do.  I’ve gone in and out of watching it since the beginning, but I have to say, this season is really good.  So, anyway.  Sunday night they came back after their holiday break to continue on with the story of the crashed plane on Wisteria Lane. I mean really, what are the chances?  Oh yeah, it’s Desperate Houswives…anything can happen.  Well, in the story, the housewives all look back at their life and ponder the “what ifs” that are significant to them.

If you watch the show, Lynette is pregnant with twins.  Before the holiday break, she pushed Celia out of the way of the oncoming plane.  Because of that, she started having contractions.  Without giving away the ending (if you Tivo and haven’t seen it yet!), her “what if” moment reflects on what it would be like to raise a child with special needs.  I have to say, it was incredibly powerful.  I haven’t seen a portrayal like that on TV ever.  For me, it was pretty accurate.  All the emotions she displayed were dead on.

If you get a chance, watch the episode here.  Fast forward to Lynette’s part, if you want.  And if you are the parent of a child with special needs, I’d love to hear your opinion.  Even if you aren’t, I’d love to hear what you have to say!

Have you ever thought about the impact labels have on society?  I think they can be very powerful, in so many capacities.  One type of label I never thought about before I had Emma, was labels for children with special needs.  To be honest, even after Emma received her diagnoses, I didn’t realize the impact labels would have on her and on us.  And frankly, we use them for good and for bad.  Yes, I have taken advantage of labels because I feel like that’s the compromise that we can give.  For example, those special seats for people with disabilities?  We’ve sat in them.  In fact, we had 2nd row seats to the Wiggles Concert (aren’t you jealous?) because I purchased seats reserved for those with disabilities.  My daughter has a visual impairment…I WILL use those seats, thank you.  My daughter was wearing a half-body cast (I’ll tell you that story another post), floor seats work out perfectly, thank you. And in my head I’m always thinking about how we can get to the front of the lines at Disneyland!!

And then there are the labels that precede the child.  I know this from 1) being a teacher and 2) being the parent of a child with special needs.  Before teachers ever meet the students, they have their file that lists every disability the child may or may not have.  There was a point where I thought the more labels she had, the worse off we were.  Of course no one wants their child to be labeled negatively, but again it’s how you use those labels.  Finding the “opportunity” in every label can be important to your child’s success and opportunities given to them.  For example, when applying for the Department of Developmental Disabilities, I had to surrender all sorts of paperwork “proving” Emma’s labels.  And do you know what that got her? PT (Physical Therapy), OT (Occupational Therapy), and Speech provided by therapists that come to the house.  It also qualified her for Respite and Habilitation hours, which are fancy ways of saying “babysitter”.  A good friend of mine told me early on that with every diagnosis she receives, she can potentially receive more help and therapy to aide her progression.  I have tried to look at it from that light ever since.

There is another way of looking at labels that has changed for me.  I don’t have a special needs daughter…I have a daughter with special needs.  Emma’s special needs don’t define who she is.  Yes, they are a part of her, but there are so many facets to my little Emma!  Did you see the video of her dancing in ballet?  She’s a natural!  Okay, maybe not quite yet, but you can see how much she loves it!  Other things that Emma loves include reading books, her dogs, and her family.  She loves to run and laugh and play with her friends at school.  Do people know she has special needs?  Yes, once they spend some time with her.  But her labels don’t need to precede her in life…in my view that puts limitations on her.  I don’t want her to think she has limitations, or that she can’t do whatever she wants to do.

I will get off my soap box now.  Was I on a soap box?  My goal in this is to encourage and uplift parents of kids with special needs.  It’s not doom and gloom and if we can see things in a different light, it’s not all that bad!

I want to hear from you…how have YOU been impacted by labels?

Emma, age 18 months