My Life In Holland

Thought I'd share this with you. Hits the nail on the head. WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved 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.

60 Minutes

I am just getting around to watching to 60 Minutes episode from last week. Anyone see it? It was about Steve Jobs andthn lead into iPads & Autism. Of course I imediately started crying. I found it so refreshing and happy in a way to see children like Mitchell. Usually whenever Autism is featured it about a child with Aspergers, high functioning Autism or severely severe Autism where the child is completely non functional. Mitchell falls somewhere in the middle. Site he dorsn't speak consistently but he does communicate and he knows exactly what he wants and h loves to be touch and to socialize but doesn't quite know how. Those are the people I saw on the program. An adult who just started using the iPad because before it was a game of charades to figure out his needs & wants. A 10 yr old boy who was considered low IQ and immature but once he had the iPad they learned how extensive his vocabulary was and he had a love for the opera. This makes me so hopeful and confident we are on the right path it Mitchell. We also were amazed Mitchell could write his name & read sight words without being taught to do so. It is all in there trying to get out. I often wonder why Mitchell is where he is on "the spectrum". Did we do something others did not do and that's why is seems smart or if we had tried something else could he be talking now? What if we had done this or that. It's so hard not to second guess every decision we make for him. But if I give myself time to process it I know we've made the right decision for us.

Family Photo

Since school pictures had been taken, I decided to get an updated one of Grace this past Monday. Her last professional photo was for her 1st birthday, she just turned 2 1/2 this month. Yah, I've been a little busy. Since that session went so well I decided to strike while the iron is hot and get us in for a family picture as well. Steve mentioned it on our anniversary and oddly enough he seemed excited about it. Other than stressing out about what everyone was to wear I was looking forward to it and thought it might go pretty well. The last family picture was taken in 2007 Mitchell had already regressed into Autism and Caroline was in the throws of the terrible two's. Three out of five of us had smiles on our faces and I don't remember the process being all that painful. So into Picture People we go a little before noon on Sunday. We are all in fall colors, Grace almost wore her princess ballet dress but I managed to find something that better fit our scheme. It starts out well without any yelling, kicking or hitting but then Grace decides she is not going to do what anyone is telling her. She doesn't want daddy do we switch then she doesn't want mommy. She wants her sippy cup then Mitchell is tired of waiting do he wanders off to get a drink too. We get everyone situated and I think out of each pose they figured 1 or 2 good shots. If someone had a sippy in their mouth I gave the OK to try again. Mitchell was being really cooperative in the beginning and following verbal instruction like a champ. Unfortunately, and there always seems to be an unfortunate turn of events, by the time we tried to get a group shot of kids only they all had had enough. In the end we let Mitchell pick his spot and placed everyone around him. This worked a little better. We ended up with some real life photos. Ever the optimist I told Stdve it could have been worse. Mitchell was only picking his nose in a few pictures. Grace managed a crazed smile even when she was screaming. Steven and Caroline didn't have a bad shot in the bunch, they handled themselves very nicely. Our pictures truly reflect who we are, no need to pretend we are a well kept well behaved bunch. Where's the fun in that? I'll share a picture in the morning when I get a chance to scan it.

Picture Perfect

School pictures came home today and I had to sit down as I looked at Mitchell's packet.   Tears of joy were streaming down my cheeks as I stared at the beautiful boy who looked so "typical", so much like any other kindergartener.  I could not believe what I was seeing, he was smiling AND looking at the camera.  The first professional picture of Mitchell since he was 1 yr old to truly capture who he is.

Happy Anniversary

Steve & I celebrated our 13th wedding anniversary this week. Crazy isn't it?  It seems so long long ago but yet I can remember all the details like yesterday.  The rain, the salon scrambling for a makeup girl because the scheduled girl lost her mother the previous night, Bert's car bring broken into at rehearsal dinner, Jack windshield being impaled, singer not getting off work, organist getting in car accident on way to church, Fr. Burke showing everyone my 8th grade yearbook picture, all our friends and family being there to celebrate with us.  Am I forgetting anything?  The day was the perfect start to our life together.
Thirteen years ago I didn't look too far into the future.  If I thought about our life in 2011 I new we would have 4 kids but didn't know we would be finished adding on.  I new Steve would be successful in his career but did not see me having already spent 8 yrs at home raising our children.  I new we would be happy but could not imagine feeling as complete as I do now.  This has been quite a journey and I am looking forward to the next 13, 23, 33 years.  We are so blessed to have relationships with the same people we celebrated with all those years ago and also new and returning friends we can celebrate with now. Cheers to all of you!

The Girls

Caroline & Grace are growing up so fast. The things they say & do really make me stop and the smell the roses while I can. Caroline has a new boy friend. There aren't any girls on the block Caroline's age so she has always had a boy friend around. First it was Nate until he figured out she was a girl I think. Then it was Jack for a about 2 yrs. They are fabulous together and she just moved right into her second home across the street. Now there is Mason whom she sits with on the bus. He lives at the end of the street but we didn't know him before this year. Now it's Mason this, Mason that. I felt so bad about Jack I called his mom to apologize for my daughter dropping him Like a sack of potatoes. She said she saw this coming as their interests were changing and they were fighting more than having fun when together. Typical things before the break up right? And Caroline started riding her 2 wheeler and if you can't keep up, you're left in the dust. Anyhow, Caroline did see Jack over the weekend and is teaching him to ride his bike. Not sure how Mason is going to feel about this. We saw Mason at Great Clips last week and his dad & brother were really trying their best not to embarrass him in front of Caroline. Hid brother kept poking him and was snickering the whole time. Then, yesterday, Caroline came home from School and said "Mason has a girlfriend!". Really? Who says that? "I did". Steven chimes in. " yay she yelled it to the whole bus a bunch of times". So I told Caroline she shouldn't tease Mason and that she was the girlfriend. She just looked at me like she didn't understand. Oh boy. Then there's Grace. She only wants to get dressed when we need to leave the house and then it's only in CaCa's clothes. Now she also wants to be Jasmine for Halloween, same as Caroline. Grace told me today "mommy I stay home by myself, I old enough now". Great that is a huge load off my back. She talks all the time about various friends of hers as if she hangs out with Ms Blanche (at bowling), Jonah, Elle, Beth, Allie & Brett. And she's do polite with please, thank you, oh sorry but then also the occasional oh darn and its not fair. Today she looked up at the sky and said it looked like rain and sure enough the northern sky was dark & it started raining 5 minutes later. How does a 2 yr old now this? I am amazed every day with the things that come out of her mouth. I have to do a better job of writing them down.

Mother of the Year

I am sitting at Mitchell's therapy, by myself, and have time to reflect on the happenings around Ivey land. Let's see, Mitchell woke this morning at 3 kicking his wall and screaming. This happened last week too and he fell back asleep so I let it go. How awful do you think I felt when I go to wake him and see his laying in corner of his bed on bare mattress wrapped completely in a sheet with a soaking wet pj short next to him and wet pants on. Yep he wet his bed, woke up mad and mommy didn't care enough to come check in him. Ugh. Luckily he doesn't hold a grudge. So to make up for being a bad mom I took Grace in for her 2 yr picture. She turned 2 1/2 last week and has not had an updated picture since 1 yr. Plus, I made an appt for a family picture next week. I think I could get some points for this. Last week I struggled to maintain a resemblance of a functioning household and this week I am starting off so good! Pat on the back. Provided Steven & Caroline don't fight the second they're home, Grace says my name less than 50x a day and Mitchell keeps his clothes on & tries not to lose his mind and smack himself in the head or kick another hole in the wall and I don't have to return home 4x every time I try to leave the house. It's only 5 days until Friday. I hear Mitchell screeching at his therapist, Joe, because he does not want to go on the playground, it's time to leave.

Oktoberfest

 Mitchell had his hands over his face a bunch of times for added stimulation I think.

 Grace was free as a  bird on these things and would exit & say "yay I did it, let's go again" over 10x.

Mitchell is in red with his hands over face towards the rear.  He rode the Dragon 4x all by himself.

Last weekend we went to St Joe's Oktoberfest & Carnival.  We went last year & had a great time so we thought we'd try it again.  We invited our friends Sandy & Brian & their kids because we knew they liked rides and it was definitely good call.  Caroline & their daughter Peyton immediately bolted for the Gravitron then made their way around for 2 hours.  I felt as if we had 2 15 yr olds not 5 & 6 yr olds.  Steven played games like he always did which was a good fit with Cooper.  It was nice to see it wasn't only my kid who whined and complained he wasn't having fun at the carnival.  Grandpa Steele showed up so we had an extra hand with Mitchell & Grace too.  They both liked the Motorcycles and went round & round for what seemed like forever until Grace crashed in the stroller.  When Mitchell was done with the kiddie rides he conquered the Tilt-a-Whirl, Ferris Wheel, Super Slide & Dragon Coaster.  He loved the blue cotton candy & also peed in a port a potty for the first time ever.  WHAT A DAY!  Steve had to ride all the rides with Mitchell because I would just vomit, he's such a great dad.  The 2nd time they went on the Ferris Wheel Caroline joined them and was testing the limits with daddy, rocking it back and forth, looking over her shoulder so it swayed.  Steve just held his breath and they managed fine.  From the ground I just waited for Mitchell to stand up & jump out but he did awesome. He REALLY liked being up way high at the top.  I was also amazed at how well he waited in line for the rides and after the Dragon Coaster the attendant unbuckled him, he climbed out and came right to the exit.  It was a great day.  It just figures though, we find something that Mitchell loves to do and we have one other, Steven, who's not such a big fan.  Having extra help makes it manageable.  Thank you dad, Sandy & Brian!

Another Clogged Toilet

The kids bathroom toilet clogged again the other night.  This is the same bathroom the Lego piece was found in roughly 6 months ago.  We thought Steven just used too much toilet paper cuz it would work then not work and we didn't know.  I had looked around the bathroom to see if I detected anything was missing but couldn't quite put my finger on what was off.  Waalaa!  Steve pulled the toothpaste out of it this morning.  Strange I didn't notice toothpaste was missing, right?  I placed it on the counter earlier to throw it out & thought I had.  Not sure if it was Mitchell or Grace who is guilty, no one's talking.

A Poem

The Misunderstood Child
A poem about children with hidden disabilities
by Kathy Winters
I am the child that looks healthy and fine. I was born with ten fingers and
toes. But something is different, somewhere in my mind, And what it is,
nobody knows.
I am the child that struggles in school, Though they say that I'm perfectly
smart. They tell me I'm lazy -- can learn if I try -- But I don't seem to know
where to start.
I am the child that won't wear the clothes Which hurt me or bother my
feet. I dread sudden noises, can't handle most smells, And tastes -- there
are few foods I'll eat.
I am the child that can't catch the ball And runs with an awkward gait. I am
the one chosen last on the team And I cringe as I stand there and wait.
I am the child with whom no one will play -- The one that gets bullied and
teased. I try to fit in and I want to be liked, But nothing I do seems to
please.
I am the child that tantrums and freaks Over things that seem petty and
trite. You'll never know how I panic inside, When I'm lost in my anger and
fright.
I am the child that fidgets and squirms Though I'm told to sit still and be
good. Do you think that I choose to be out of control? Don't you know that I
would if I could?
I am the child with the broken heart Though I act like I don't really
care. Perhaps there's a reason God made me this way -- Some message
he sent me to share.
For I am the child that needs to be loved And accepted and valued too. I
am the child that is misunderstood. I am different - but look just like you.

Overnight

No routine is the routine in our house. It's bad I know but it's the way we roll at Casa Ivey. Grace has something against sleeping in a bed, any bed, so she sleeps on the floor at the foot of our bed. She used to sleep on the little Elmo couch, then it was Dora, but she has outgrown them so the floor it is. We are slowly making the transition to her bedroom which she shares with Caroline and she should be moved in by the time Caroline heads to college. Every night grace wakes sometime between midnight & 5 am yelling about something in her sleep and screams to go downstairs. I just want her to be quiet & not wake everyone up (mainly Mitchell) so I do what I am told. We spend the rest of yhe sleeping hours On the couch. Anyhow the point is she screams about something that has gone on during the day. Last night she yelled "no Caca that's my pizza", the night before it was "no Mitchell don't take my french fries". Clearly her days are very stressful and she has nighares about them. My mom was her last night & told me Caroline took the last slice of pizza for dinner & Grace was mad. I'm sure tonight it will be the frequently used " Mitchell don't take my juice, come back here." Hope everyone else has a good nights sleep.