Visiting Italy while I live in Holland

I scheduled my trip to Nashville so that it wouldn't affect Hailey at all...I scoured the calendar looking for that 4 day window when she'd be with her dad...where there weren't any activities, no field trips, no therapies or doctor's appointments that I would miss.  I thought I did a great job and booked the trip...

The best laid plans...you can usually count on those not working out.

Just like when I planned to have a perfect little baby...I planned to have a perfect little girl who loved ballet and girl scouts and would get married to a very handsome young man after she finished up her college life at Yale and became a brilliant lawyer...I am a planner...I plan everything.  I write it down, list it out, calendar it...I planned to live in the same home in the same town with the same husband and the same friends, near my same family...I PLANNED IT!!  (note divorced, 4 homes since then, barely any of the same friends and a split family...)

I am not sure why I continue to be surprised when my best laid plans...BOMBBBBB!!!  I am not sure why I plan anything at all anymore.  I guess it is in my DNA...my obsessive compulsive behavior to have to list it all and cross it off.

Now the trip was FANTASTIC...the most fun that I've had in years.  I literally did every adult activity that you can not do when you have 3 children hanging on your leg...

Then I returned to reality.  The reality that Hailey doesn't do well when she knows I am gone (thus the scouring of the calendar before I booked it...).  So the last minute field trip and 2 half school days (yes last minute that her teachers didn't tell me about) that her father couldn't accommodate in his schedule made it so that she had to know I was gone. 

My mom had to take her to her field trip and so she had to come with us to drop me off at the airport.  Added to the fact that she had a half day on Monday so I wasn't quite home when she got home from school and my suitcase was on the floor of the kitchen and I hadn't made our house look like I hadn't just gotten home...and you have my mini monster...

God I love her...every day. Even when she is a mini monster but WOW...she exploded...We have had the most tantrum filled 2 days of my life.  I literally thought that she was going to pull Aubrey's hair out of her head and get us into a car accident yesterday.  She actually GRABBED the wheel!  (We call her lilly long arms...this child can extend her arms to reach ANYTHING when she is pissed)!!

I think that today she has finally accepted that I am not going anywhere and she doesn't have to be made anymore so the tantrums have subsided...

Despite of all this, I will continue to plan...because I am a planner, a lister, a write it downer, check it twice, cross it off when it's done type of planner...That is who I am...So I'll just have to accept that my best laid plans...well you know!

Back to reality...back to life...but I do dream of living in that land where there are only adult things to do...I'll have to settle for visiting and having my wonderful vacations with my very best friend and all of the wonderful adults! 

I'll settle for visiting Italy while I live in Holland...

And off I go...

It isn't easy for me to leave...anywhere...Even for a day or for a few hours or for a night...So imagine me leaving for 5 days!!

I'm certainly not saying that I don't want to go on vacation and leave for 5 days of utter bliss hanging out with my very best friend in the world...doing adult things...having adult conversations....with no children in sight...for the entire 5 days!

Because, oh yes...I DO want to go.

But it isn't easy.

It means a 7 file folders of directions, emergency numbers, medical cards and information...Lists of allergies, doctor's numbers, homework information...Instructions for feeding, for field trips, for medication, for sleep. 

It means packing and hiding the suitcase so that she won't know that I'm actually leaving somewhere...which would send her into a tailspin that no one wants to see.

It means figuring out who is watching which child and where...Who is taking which child to which field trip, which school...Who is making sure that the teenager gets up on time and to school on time....Not to mention, making sure the laundry is done so that he has his gym clothes since I won't be here tomorrow...

Making sure that there is food in the house so that when hubby comes home late from work, he can eat (although he'll probably eat out anyways)...making sure the dish washer is clean and empty and the garbage is out (because no one will do those things when I'm gone and it will be all stinky and gross when I get back).

It is a lot of work this leaving thing....But I'm doing it!!  And I'm excited...and I can feel it and taste it...I'm even looking forward to the flying part (even though I hate to fly) because it means 5 hours of uninterrupted nothingness (is that even a word???)...

I will miss the little ones and the hubby...

But...

I'm leaving on a jet plane...I hope the house doesn't burn down while I'm gone and that the children are all in one piece when I get back!!!

A Choice

Betcha thought this was going to be some serious post about some serious subject...Well it is serious to me but let me warn you...It is not some political topic!

A shower or an extra hour of sleep...that is the choice I made today and believe me, I am paying for making the choice that I made!

I chose the extra sleep.  I haven't been sleeping well lately.  Hubby has been working a lot and I have been alone a lot (technically not actually alone but alone in the sense that the only people that I have conversations with are 14, 9 and 3...and the 14 year old rarely says more than a few words...Oh and a couple of therapists, teachers and maybe the grocery clerk...I'm pretty sure those don't count as stimulating social conversations though!).  So my sleep has been less than restful...I mean, I am tired but mentally, socially I am STAGNANT...I am bored...

So last night, I fell asleep at around 9:00, then woke up at 11:00 then fell asleep around 1:00 am then woke up at 3:00 am and then fell asleep at 4:15 am to dream wonderful dreams and sleep soundly for my alarm to wake me up at 5:45 am...and I wasn't ready of course.

Now I know it is Saturday and most people get to be lazy or sleep in a little but here is where the choice comes in...I can sleep in an extra hour because of course my little ladies normally wake up around 6:15 or 6:30 and I could sleep until then but then I can't take a shower in peace.  I mean have you ever tried to take a shower while two little girls run around the bathroom screaming or banging on the shower door or pulling all of the towels out of the cabinet or smearing lotion around the floor or whatever it is that the two of them decide is going to make me get out of the shower as soon as humanly possible so that they can receive my undivided attention!!  Believe me, it is not fun!!

So I usually get up early so that I am put together before they wake up...So that I'm ready for the day and for giving them my undivided attention! 

But today, I chose to sleep...chose to finish my dream...I was woken up to Hailey rocking in her bed...banging it against the wall as she does...and to Aubrey screaming...mom...I am hungry...And then the whining (to which I said, it is 6:30 am...too early for whining...to which Aubrey says, can I whine at 7?)

Now it is 9:13 and I have put off the showering madness for too long.  Everyone is fed, everyone is clean and bathed, dressed...everyone is happy and playing...except for me...I am dreading the 4 minute shower that I am going to have to make do with so that complete and utter chaos doesn't ensue in our house, then the quick 2 minute blow dry of the hair and a quick ponytail...then trying to get a little make up on before the girls decide that they want to make up their faces too and clamor for the mascara!...So Now I'm stalling...

Yep...this is how we all look when Mommy chooses sleep over getting ready!

The upside is that next week I am flying to Nashville to visit my best friend in the world for 4 days...I plan on getting ready in peace every day and not having to make this little silly choice that seems to come up every Saturday!!  But until then...here goes nothing!!

Well at least there's that!!

Oh the pity...Really can people just stop already?  Hailey had an assessment today which meant I had to take her with me to drop Aubrey off at preschool...UGGGG...

Twenty four 3 year olds running into class is actually more like...."ooooohhhhhh look at all that beautiful hair I can pull and all the kids I can make scream while mommy tries to sign sissy in on the sheet and hold both of my hands at the same time"...in Hailey's mind.  I try so hard to be positive...to not expect the worst of her in this situation but the fact is...IT IS LOUD at drop off time for a 3 year old preschool class...Hailey does not do loud, she does not do chaos, she does not do tons of other children.  It freaks her out.  And I have to sign Aubrey in, I have to walk her into the class and they do not have a wheelchair ramp into the classroom (I know...drives me crazy) so I have no other option to walk Hailey in with me and hope for the best...HA HA HA...

First little guy that came into her reach while I was signing Aubrey in and boom...hair is pulled...CRAP.  I apologized to him and to the mommy...Hailey signed sorry (all while giving him that "I'm going to sign that I'm sorry so that my mom believes me but really I meant it and I am absolutely not sorry" look)...but the damage was done. 

So then I start to get the pity looks...I HATE THE PITY LOOKS!  My life is not perfect but it's mine and I love it and I'm happy and I don't have anything for you to pity...

Guess I'm not making any other "mommy" friends in this class...I could hardly run out of there fast enough...

So I picked Aubrey up a few hours later after finishing Hailey's assessment and dropping her off at her school and Aubrey says this..."Mom, my friend says it's ok that sissy pulled his hair"...and I said, "oh that's good...did you guys talk about it?" and she said "yes mommy but he didn't care...his sister pulls his hair all the time"...well at least there is that!

Amsterdam International...Love it!

I have received the poem "Welcome to Holland" many times over the years from well meaning people.  It is an ok poem but usually just bothers me because I always think it is so "simple"and in no way describes what I was going through...Here is an updated version from a blogger.  My fellow cri du chat mommy, Tiffany posted it from another blog.  The author's name is at the bottom with her information. 

I hope that this helps people understand that there is much more going on inside a mother who first receives a diagnosis for their child than a simple cliche can fix or comfort...The depths of your soul hurt...It is unexplainable, unimaginable but here is a pretty good explanation...

Thank you Dana for writing this and Tiffany for posting!

 

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting.  Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland."  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet. 

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending. 

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.  And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

(copyright -me, Dana Nieder, 10/2010.  I would make the cool little symbol, but I can't figure out how to)
Please feel free to forward this, blog about it, post it places, etc.  My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone.   If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out. 

Also, if you blog about it or post to a website, please email me to let me know, because I think that's pretty cool :) 

Thanks for reading :)

My definition...My identity.

Aubrey goes to preschool.  A school filled with normal little three year olds.  With two older siblings she couldn't wait to start going to school and so I found one for her, two days a week for a few hours.  I was so excited for her...and for me...other mothers to meet! 

I've been sort of a recluse in the friend department.  Over the years, I have discovered that other mothers as a general rule don't want to visit very often...I can't blame them, for Hailey pulls their children's hair and doesn't play well with their children so they get bored.  Oh they still visit...just not often.  And plus, I worked a lot and didn't have the time to cultivate new friendships.  Many of my childhood friends disappeared when Hailey was born.  I was an emotional wreck and all I spoke about was her disorder, her therapies, her doctors, my sadness.  I was self absorbed and they all just faded away...and I let them.  I wanted to be alone back then, in my sadness, in my new role as the mother of a special needs child...With my new identity.

Since I've been a "stay at home mother" for a little over a year, I found that I am lonely.  I have a couple of wonderful friends who I love and cherish...but they work hard and have families or live far away and so I don't see them very often...don't talk to them as much as I'd like.

So I went to this school excited to meet other mothers...potential friends...so I wouldn't be so lonely...so I could connect with other women who stayed home too...to see how they staved off the loneliness...

But I found that I have a problem.  I have defined myself with Hailey.  With her disorder.  With her therapies.  With her doctors.  I guess I had to...have to, whatever.  But I'd like to not be defined by it. 

I began to think and realized that everyone I meet, I tell that I have a nine year old with a severe genetic disorder...I dare them to ask me what it is...and for that question (which always comes) I have a standard well rehearsed answer...I could say it in my sleep.  It is an "elevator" speech...It is her disorder in a nutshell, in a 60 second explanation...And so I am defined by it.

I try so hard not to do it.  Wonder why I can't just say I have a 14 year old, a 9 year old and a 3 year old.  But no matter how hard I try, I can't stop adding Hailey's disorder after her age.

She is certainly not defined by it.  She is Hailey.  Beautiful.  Stubborn.  Loving.  Sweet.  Nine.  She is her.  She is not Cri du Chat.  She is not 5 P Minus syndrome.  She is not Autism or auditory processing disorder or sensory disorder.  She is simply Hailey. 

So who am I?  What defines me now?

I don't mind...

All of the meetings are getting to me...the IEP prep is getting to me...the conversations about out of compliance IEPs is getting to me...the assessments are getting to me...This is what I'd like to tell all of the "experts"...

I don’t mind...

I don’t mind if you tell me what to do...I do mind if you don’t listen to my response.

I don’t mind if you tell me it’s my fault...I do mind if you don’t take responsibility when it is yours.

I don’t mind helping if you need help...I do mind if you take advantage of me.

I don’t mind if you tell me that you don’t like me...I do mind if you don’t know why.

I don’t mind if you don’t agree with me...I do mind if you can’t give me the chance to disagree with you.

I don’t mind if you criticize me...I do mind if you do can’t do it to my face.

I don’t mind if you need a break...I do mind if you can’t give me one.

I don’t mind if you don’t listen to me...I do mind if you blame me afterwards.

I don’t mind taking consequences...I do mind if you can’t take yours.

I don’t mind doing things for you...I do mind if you fail to appreciate it.

I don’t mind if you’re cranky...I do mind if I can’t be.

There...I feel better!

A special kids event...

An amazing event put on by the Active 20/30 Club in Sacramento...All Sacramento area special kids and families were invited to a fantastic day of fun at Fairytale town.  Thank you Active 20/30 Club for such a wonderful day...

Mommy needs a time out

An ear infection...a crazy day...a crazy night...doctor's office times two...fight with the pharmacist...I hate when she is sick.  Not only because she is sick but because when she is sick, it makes her crazy!  We made it through almost the whole day and the whole night.  Every crisis averted, every thrown toy and scream from the little sister, we got over it.  I was thinking as we were cuddling on the couch, just the three of us girls, wow...we made it through the day.  Then I said, let's go brush our teeth and read stories.   All hell broke loose.  Long story short, she got a hold of my new fancy $4 oil reed thingy...You know, the little thing with the smelly oil and the reeds sticking out.  I bought it the other day on sale and hubby said, really?  You know she is going to flock to this and throw it right?  And I said, no she won't...she's doing much better.  I was wrong, he was right.  Smelly oil everywhere...GRRRR...I yelled at her.  I hardly ever yell at her but I did and she is sick and I feel horrible but I yelled.  I needed a time out.  I cleaned it all up with minimal damage to the book case, only a warped area or two, threw the hallway rug in the washer...Had my little one get her own jammies on and went into Hailey's room.  She signed sorry and I cried and told her I was sorry too...I knew she didn't feel well and I yelled at her.  It was horrible.  So I brushed their teeth, read their stories, gave her her meds and ushered both the girls into bed...Kisses to both then I closed their doors...Then I snuck back into Hailey's room and climbed in her bed and told her again that I was sorry...That sometimes mommies need time outs too...She kissed my cheek.

Then my son comes out of his room and says, wow mom...it smells GREAT in here, what did you do?  I just started laughing...