Amsterdam International

I'll update about Christmas later after the snow settles and I download the pictures and videos.


I've come to the realization I have not one, not two, but three special needs kids.  As George and I looked at the calendar and discussed January and February's appoitments we realized we had at least one appoitment a week in January and some weeks we had appoitments every day of the week.  We have therapy twice a week, specialists for Matthew and Christopher and a developmental pediatrician appoitment for Jonathan also as we get his why started.  I've referenced Welcome to Holland before in this post and here's a companion that may explain it a bit better.

This blog was shared with me and I agree with the sentiment.  Our lives have changed now that we have some whys and are looking for others.  It hasn't changed in a negative way, just a different way.  I think this sums it up well.

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.



© Dana Nieder 10/2010 All Rights Reserved

Thank you Elvin

2 weeks ago we went to see Santa.  I've been so busy it's hard to keep up with the posts here!  I've been doing phone calls, doctors appoitments at least once a week, 3 therapies a week, trying to do Christmas cards, finishing up shopping, baking and trying to cook and clean the house while keeping up with the bills as well.  I'm not getting any sleep!

We took the boys to Jack's Toy Drive on the 11th and they met Santa while they were there.  They loved seeing Santa!  I was trying to get us settled in and lost Jon in the crowd.  I got a tap on the shoulder and saw him like this

as he was already telling Santa what he wanted.  If you want to know, it was a new Batcave and Star Wars Legos.

Next Chris walked right up to Santa and did his best smile :)

as he told Santa he wanted a racetrack.

Next Matthew told him he wanted a real penguin and a fish.

The boys started with their Elf on a Shelf the beginning of the month.  Our sneaky elf that they named Elvin has showed up in crazy places.  He was the tree topper a few times, was in their bedroom, on their beds in the morning, on the couch, etc.  The boys have had conversations with him before they leave for school.  I've overheard Matthew saying things like "Now Elvin, make sure you tell Santa we were good boys when you see him."  It's worked somewhat.  I've had to call the "big guns" a few times.  Who is that?  Santa himself my dad pretending to be Santa.  When my mom pretended to be Mrs. Claus yesterday Matthew told her "Gram, I know it is you!"  Can't trick him, huh?





How it went and how I envisioned it

Yesterday was the IEP meeting to discuss the goals we wanted to add for Chris for the increased 30 minutes we fought to get him.  This is what I envisioned: I walk in and we talk about the 3 reports I gave the district, the neurologist's recomendations, the geneticist's recomendations, the neuro-opthomomogist's recomendations, the developmental pediatrician's recomendations, and the genetic pamphlet and the all agree that they need to provide Chris with the help that he should.  The Physical Therapist would have agreed that her recomendations were incorrect and she magically saw the errors in her way.  She would offer more PT for Chris without any problems and would agree with everything I'm saying and all the information I provided.  She would have provided goals to work on his stamina, balance, and strength.  We would all sing kumbaya and do a group hug in the end as we all agree to work together to serve Chris' needs. 

What really happened?  "We don't want to go to court so we're giving Chris the extra 30 minutes you were asking for althoug we don't see the need for it."  "I'm a board certified neurodevelopmental physical therapist BLAH, BLAH, BLAH"  What I said "Clearly someone doesn't know what to do with Christopher if 3 different therapists who provided us with independent evals, a geneticist, neurologist, pediatrician, neuro-opthomologist, neurodevelopmental pediatrician, and all the genetic reports and information on the 16p11.2 duplication all say the same thing."  Their response? "I don't treat the syndrome I treat the person and I've not looked at any of the doctors reports or recomendations from the genetic paperwork."  Obviously understanding the medical aspect of Chris' diagnosis wasn't important to the therapist otherwise she wouldn't have suggested he needed eye therapy when the 8 other people disagreed with her.

After this things sounded more and more like this to me "Blah, Blah, Blah....I think I know better than you and am pissed you are questioning me."  In the end the group hug looked more like this...



Give Thanks

So I'm a week late.  I've been busy making my case against a school system after they are still not budging on the whole Chris needs more PT thing.  The PT is saying that his balance, motor skills, etc are within normal 3 year old range.  Our private PT is saying something different as is Chris' PT from Early Intervention, the OT that works with him, the aqua therapist that works with him, a geneticist, eye doctor, neurologist, developmental pediatrician....you get it, right? *After I wrote this they did agree to give Chris an extra 30 minute session!*

The boys helped me make pumpkin pies for Thanksgiving.  Chris loves baking and is a completely different kid while doing it!  He chats up a storm, helps with pouring, cracking eggs, stirring, and even touched the crust when I made apple pie!

Chris had ear tubs put in again yesterday.  I swear the kid was like drunk baby after he got the happy juice.  He looked like George on a normal basis :)  He was grinning and honking George's nose then laughing. 

You've entered the "PPP" zone

Do...Do....Doo...Dooooo....You've entered the zone....the "PPP" parent zone....What is this you ask?  It's the Perpentially Pissed off Parent Zone....it's like the Twilight Zone



What is a Perpetually Pissed off Parent you ask?  This is the parent of a special needs child who is angry all the time.  There are a few different species of a PPP.  There's the PPP who has just learned of their child's diagnosis and is pissed at the world.  There's the PPP who is angry and pissed about fighting tooth and nail for what their child needs to succeed be it school placement, therapies, or services to help our children. 

Just like the 7 stages of grief, it is suggested that parents of special needs kids go through their own stages of grief.  It is a cyle however; parents of speical needs children tend to cycle through the stages of grief and and every once in a while it starts up again.  For example, when you have your "D" day, when you have your initial IFSP/IEP, subsequent evaluations, when you see other children around your child's age or even younger who are meeting their milestones on time/early and you are hit like a big mack truck with your child's development....

I believe there's a level of acceptence but there's always in the back of your mind the wanting to see your child developing typically.  There's always a bit of THIS CAN BE FIXED but unfortunately it can't.  Unless you got your medical degree from the School of Playboy like Jenny McCarthy and think that you can be cured, their skills will improve but the initial concerns will still be there.  I can't remove extra pieces of chromosomes from my child.  I wish I could.  He HAS inproved his skills.  A year ago he was just starting to walk, he had a few words.  Today he is running (although not well), he's able to converse with us (although a simple conversation) and you'd never know that was the same child!

The second type of PPP is the one who is tired of fighting and has become bitter.  I'm here as well unfortunately.  Sometimes parents have to fight for someone to recognize that their child might be not developing on schedule.  I had to question more than once, I questioned at 6 months, 9 months, etc.  Finally the doctors believed me after I brought them the Early Intervention report showing how behind he was.  Then it was fighting with the insurance company to finally agree to pay for the genetic testing.  Next it was fighting with the school district to get Christopher the appropriate services. 

It sucks but it is what it is.  I have to figure out how to get out of this funk.  I really do.  I can understand why there's a high divorce rate for parents of special needs children; I'm now taking the fight ode to my marriage and I don't want that.  I want us to work as a team.  At this point I don't know if I know how any more.

Handbook to the Recently Diagnosed

You know like on Beetlejuice in the scene when they find themselves suddenly dead and they are in a waiting room? Then they go back into a room and get a book entitled The Handbook for the Recently Deceased….
Guide to the Recently Diagnosed

I’m trying to figure out where our handbook is. Where is The Handbook for the Recently Diagnosed? The book that explains to parents the lingo, rules, paperwork, services you are entitled to, therapies your child should be getting, how to advocate for them more? Yea, there is nothing out there like this….WHY?

At a training for my new job, we had to watch part of a movie called Educating Peter and we talked about the support system the mom had and how knowledgeable she was in preparing for his future. No one tells you anything. It’s like you have to have hip boots on and wade through the shit of bureaucracy to figure out the lingo, rules, paperwork, services, and therapies. It shouldn’t be that way either…..it seems as if there’s someone who should be able explain all the shit and make our lives as parents of special needs easier.

Pipe dreams

Last week I started a job. I haven't worked a real job in a few years. I did about 6 months in a clothes store but am not really counting that as a real job. Last week I started working in a private school for kids with significant disabilities in their transition program. I’m technically an aid but thought it was something that might be able to get me a job in the school part of their program. It has been really difficult to do this. I work all day with adults that are mentally challenged, physically challenged, autistic, have genetic syndromes.



I thought this would be a great job since not only do I have the experience as a special education teacher but being Chris’ mom would be helpful. What I got was a huge dose of reality. This is what we would be possibly facing with Christopher. I want to cry! I think that it is every parent’s dream to have their children do and be better than they are and he’s no exception. It hurts me more than anything to know that he may not be able to go to college, live on his own, and be more productive than George and I could be.


I had dreams of my boys going off to college, Penn State preferably and choosing a career that they love, finding their loves, and having families of their own. Now I have to worry about how to take care of Christopher when he reaches adulthood.



He’s starting flapping again, spinning more, and lining things up more frequently. He’s becoming more and more aggressive hitting, kicking, punching, scratching, spitting, and screaming in our faces. It sucks!


Instead of saving for his college I’m going to have to save for his future and well being without us. I don’t know if that will mean that I have to plan for one of his other brothers to take care of him when George and I have passed but I can say I will not put him in a group home. I will not let a stranger take care of my baby boy.



It sucks and there’s no way of putting it nicely. It sucks hard. I look at our children as our future and never in my life did I imagine our future looking like it will. I will have to learn to embrace our future but as of now I don’t have to like it.

Pirates, Firefighters and Thomas Oh My!

Last night was freezing!  After a week of beautiful warm weather we were so cold we ended up going home early.  Jon was a pirate.  Matthew was a firefighter and Christopher was Thomas.

Pumpkin picking

We took the boys to a pumpkin patch a few weeks ago.  They went on a tour of the farm that was there, saw cows, goats, pigs, horses, and a zonkey!  That zonkey was the highlight for me....

Not the boys!  They were obsessed with a cat.  Yes, a cat....something they can see every day.....

They picked out a pumpkin that we got to carve tonight!

As soon as blogger lets me upload it I'll edit my post and share with everyone.

Lucky 13

Never in a million years did I think I'd be saying this....but HAPPY 13th BIRTHDAY JOSHUA! 

Dear Joshua,

  You have grown into an amazing. smart, caring, loving, compassionate young man.   I have loved watching you grow from a tiny baby to a toddler, through your little boy years, your tween years and hope to continue watching you grow.

  You enjoy playstation a bit too much at the moment.  Your love of the Yankees may divide this house a bit; it really pains me to have to buy that stuff.

I love you (and yes I am still able to say that)!
Mom

POTW: Fall crafts

Since I used to teach I have a lot of fall craft ideas that I've done with the boys.  A few years ago we did apple print crafts, last year we did fall trees with sponges (I think we're going to do this again this year).  We've done spider hand prints 2 years ago at a playdate, pumpkins last year and the year before as well.

This year we did a ghost from marshmallows.  We got the idea from No Time For Flashcards.

I had the boys draw a big "U" on their black construction paper, next was an "M" to connect to the "U".  This was done with a white crayon to make it easier to see. 

The next step was to glue the outline of the ghost and finally they put the marshmallows on the glue.

Fall is upon us

I am a featured blogger today on Moms of Multiples!  Check me out!
In case this is your first time here, let me give you a quick introduction….I have been married to my husband for 6 years and we’ve been together for almost 9. Joshua was 4 when we met and 6 when we got married. Shortly afterwards we decided to give Joshua a sibling and through IVF we were able to give him not just one sibling but two. We had our twins, Jon and Matthew in September of 2005. At that point we thought we were done and happy with our family of 5. Around the year mark, we changed our mind and agreed that we would return to the same doctor who helped us the first time around Jon and Matthew’s second birthday if need be. Instead, we had our youngest son Christopher 4 days before Jon and Matthew turned 2.


Jon, Matthew and Christopher were all born prematurely. Jon and Matthew were born at 32w4 days after my water broke. They are in a preschool inclusion class at the moment. We suspect Jon has a learning disability and we believe that Matthew has Asperger’s Syndrome. Christopher was born at 35 weeks as a result of preeclampsia/HELLP syndrome. We noticed something wasn’t quite the same with his development. We noticed him not meeting his milestones on time. When we finally convinced the doctors that there may be something going on he was 15 months old. We went to a developmental pediatrician at 19 months old and were able to get some standard chromosomal testing that most doctors now do as standard practice at a bit over 2. This revealed a micro duplication on a chromosome. Christopher has something called 16p11.2 duplication and he has PDD_NOS. He just started in a preschool program and is in a preschool disabilities class for part of the day and an ABA class for the other part of the day.



Now on to your regular blogging….

Last weekend Jon, Matthew, and I took a road trip to my parents’ house. It is usually a bit over 4 hours to get there…if you don’t stop at all. That’s not happening with two 5 year olds! We stopped to get some supper and stopped about an hour after that to buy my cousin a baby gift. She had her daughter a bit earlier than expected and we didn’t have anything for her yet.

What should have been a 2 hour drive at that point took 4 hours because of traffic. Seriously not fun with a 5 year old who did nothing but talk the entire time. THE.ENTIRE.TIME!

After we got on the road again, we hit more traffic. It took 8 hours to drive home! I’m so thankful that Matthew fell asleep after we got back on the road.

So, the reason we went for the weekend was to celebrate something called Flaming Foliage Festival. It’s been going on for over 60 years and is to celebrate the height of the fall foliage in the mountains. They have a parade, flea market, and pageant for high school kids.

The boys were so excited to see the parade and really got into it.

Italy, Holland, or Beirut?

I’ve referenced the poem “Welcome to Holland” by Emily Perl Kingsley on my blog before

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.

and I’ve also offered it’s companion “Welcome to Beirut” by Susan F. Rzucidlo

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

I’m starting to have a new opinion on Holland and Beirut. I think of it as this; there are days I am in Italy, 

days I am in Holland,

and days I am in Beirut.

I’d like to think that my days spent in Italy are not always the typical things that everyone wants to see. I may spend part of my day in the Italian countryside, I may be hijacked and taken to Beirut…. I may relish in the fields in Holland and enjoy the scenery.

We may take our time but we will eventually be Italy again relishing in that amazing countryside and driving towards the Coliseum, Venice, and other places that everyone else looks forward to going while in Italy. We’ll be there eventually but in the meantime we’ll be enjoying the sights in Holland.

Oh No He Didn't! HELL WEEK

Christopher started school last week.  He's going the ENTIRE day and riding the big boy bus to do so.  Monday I had to drive him in since he tried climbing out of his harness in the moving bus!  Oh no he didn't?  Yup, THREE TIMES!  I asked for an aid on the bus at his initial IEP meeting and they wouldn't do it.  I asked for one last Monday and they said no again.  Oh no they didn't?  Yup, sadly they did.  I expressed my concern about him hurting himself.  They didn't care.

I tried putting him on the bus Tuesday and he did exactly what I predicted?!  He scraped his neck while trying to climb out!  Oh no he didn't?!  Yup, he did.  And, my response?  I drove him in AGAIN and asked to speak to the child study team.  They weren't in so I spoke to the principal.  He got a temporary aid for the bus.  Apparently temporary means one week only.  The aid wasn't there today.  This after we   I had a hell of a time getting him dressed and on the bus yesterday and it took me wresteling for half an hour to get him dressed.  He was late getting on the bus as a result.  And....George had to force him on the bus today.  I'm in the process of figuring out what to say to say through e-mail that doesn't sound "combative".  Apparently I'm a combative parent?  Oh no they didn't say that?  Yes, sadly, she did say that.  His case manager told me I am a combative parent because...get this?  I will advocate for what he needs!

Birthday madness

The past two weeks have been pure insanity!  We had Chris' birthday, then Jon and Matthew's birthday several days later, that weekend we went to our nieces' birthday party, and this past weekend we had our boys' birthday party.

I think I've had enough birthday cake to last an entire year!  We had Thomas cakes for Chris' birthday, Elmo and cookie monster for our nieces' birthday party, and pirate cupcakes this weekend for our party.  I'm sharing a few pictures of our photo shoot done by a friend for their party.

Happy birthday! (Jon and Matt)

I'm sorry I'm doing this a week and a few days late boys!

Dear Jon,
  Thank you for chosing me as your mommy! I remember seeing you for the first time and not knowing that babies could be that small.  You looked so tiny!

You have amazed me since day one with your sensitive, funny personality.  You have been sunc an independent little boy and love playing on your own with your action figures.  You love army men and your big doggie (STILL)! 

This year you have blossomed into a fun, silly, sensitive guy who I love more and more every day.

You are such a good and silly boy!  You amaze me every day with your love! 

I love you to the moon and back,

Mommy

Dear Matthew,

You came into the word 5 years ago and weren't quite ready to be here yet.  You have showed us how strong you can be.  You have blossomed into a funny boy who will do just about anything for a laugh.  This year you have become obsessed with Wii, Batman Lego, Mario and Ben 10.

You are my cuddle bug and between you and me, your hugs are like magic!  They make me feel better on a bad day.  I don't know what it is about them but looking into your big puppy-dog eyes with a great big squeeze make me feel better.

I love you to the moon and back!

Mommy

Happy birthday Christopher!

Dear Christopher,

  You are 3!  I can't believe it!  I'm amazed at you and what you've done this past year.  Last year you had problems letting us know what you wanted and were really unsteady on your feet.  Today you were unsteadily running around, you are going pee pee on the potty, you are talking in sentences and are chatting up a storm!

  You ate your favorite meal today "fimp, bocci, and fenh fies" aka shrimp, broccoli and french fries.  We went to the toy store and you wouldn't put the birthday boy hat on but happily carried around the balloon that you were given.  You got a new Thomas video and we watched it several times today!  You loved your Zhu-Zhu pet.

  This year we went through a lot.  I though that last year was hard but I have to tell you Iron Man that this past year was much harder.  We did get your why but that doesn't change anything about you.  You were and always will be you and we will love you no matter what.  Your why just helps us help you more.

I love you more and more every day! And I can't wait to see what this next year brings to us.  It's been an amazing adventure my love.

Love you!

Mommy

On a different note, I'm going to be doing a give away. Lavender Lotion and a Lavender soap.  My friend at Who Knew? Reviews is hosting a Blog for a Cure Blog Party as a fundraiser for her Leukemia & Lymphoma Society walk.

This will be a quick give away and it will end tonight at midnight.  To enter, you need to visit Lani's site and donate at least a dollar to her fundraiser.  Next, you need to leave a comment here letting me know. And lastly make sure you follow me.  I will use random.org to chose the winner.

You like me, you really like me*edited*

YEA!  I'm finally posting about my awards!  I have been given 3 different awards, two by The Drama Mama and one that I got in July and didn't know it! 

Tthe Blogger Buddy Award is my most recent..  The Drama Mama and I go way back ok, so more like 3 years when she was expecting Scooby and I was expecting Iron Man.  To accept this award I have to list 7 facts about myself and give the award to 5 other people.

1.  I am a history buff.  I love all things history wise.  I love learning about history.

2.  I hate cleaning and will aviod it like the plague!

3.  I bite my nails; I know it is a nasty habit but it's better than other's habits.

4.  I am very disorganized but I do try to be more organized.  It just doesn't happen.

5.  I love baking and am looking forward to apple crisps and pumpkin breads. 

6.  Although I try to be crafty,  I am no Martha Steward.

7.  I had a lovey that I had as a kid called Ramcoon.  He was a puppet Raccoon that I got at FAO Schwartz when we were in NYC at Christmas-time.  I slept with it until I moved in with George when I was 24.

I'll pass it on as soon as I think of 5 people!

Sometimes being a jackass pays off

George always tells me I'm a stubborn jackass when it comes to things.  I don't give in.  Usually I get upset at that.  I have to say that I'll take it as a compliment right now.  Chris' Developmental Pediatrician visit and IEP meetings didn't go so well. 

The developmental pediatrician told me that the genecist doesn't know what they are talking about.  WTF?  The person we saw is the ONLY person who knows about 16p11.2 syndroms.  OUR doctor knew noting about them when Chris tested positive for it.  I knew more than he did. 

He told me that the orthotics for Matthew weren't doing anything for him.  AND we needed to do more therapies with him at home; school based therapies are a waste of time.  I should give up on both Matthew and Christopher as far as growth?  No mama would think like that!

Yesterday's IEP meeting for Chris was less than productive.  I'm willing to go full steam ahead with a due process hearing if need be.  They knew in June we didn't agree to the evaluation report for PT.  We had Chris' EI PT call in July and August.  They didn't return the calls.  They didn't have a PT there to explain why she saw Chris do things that he can't do.  Now we have to wait until next week to talk to her.  They hope she'll be in next week to explain why she thinks Chris can do things like stand on either foot for more than 3 seconds when YESTERDAY we had him try and he could do one leg for a second and this was after about 10-15 minutes of coaxing!  So, now we are in search of a new developmental pediatrician in NJ and an educational advocate and lawyer in NJ to help us.

Oh No He Didn't: Just do it

I'm so happy my child has decided to go potty.  And I know that using public bathrooms is a fun things and a necessity for toddlers.  BUT, I swear it was a bit much yesterday.  Yesterday we went twice in Michaels, twice in Learning Express, twice at home during an hour long speech therapy, and not one...not two...NOT THREE...NOT FOUR...but FIVE TIMES!  Oh no he didn't!  Yes, he did and I'm sure the people at Applebees must think I can't control my kid.....  That was 5 times in 45 minutes because I asked them to pack us up.  He didn't poop until late last night.  I've even given him the ability to drop the duce in a diaper.  He tried in the potty all day until he was shaking with pain.  Poor baby!

Two Truths and a Lie Thursday

I made this video for Chris...ENJOY!

Make photo slide shows at www.OneTrueMedia.com

Literacy Style!!!
1.  I just finished Wicked.   I LOVED it!
2.  I am currently reading The Girl with the Dragon Tattoo and am really getting in to it.  I am very much enjoying it.
3.  My favorite series is not Twilight but the Sookie Stackhouse series.  George calls them Vampire Porn.

Jumping through hoops

I had an interview today to have Chris qualified for SSDI and a Medical Card. We will be able to use the money to pay for his medical debt the medical card will help pay for the medical bills that he will have come January 1st.

                                             

I felt like I was jumping through hoops!
We had an appointment in June where we didn’t qualify because we had too much money in hidden assets; we fixed it by cashing out all of George’s bonds and using them to pay for bills and groceries. Now we have no backup if we can’t pay a bill. Thank you Uncle Sam for making us financially unstable so we can’t pay bills.



The person wanted to know multiple times why we were applying for Welfare. We aren’t applying for Welfare; we are applying for financial assistance for our disabled child. There is a difference!

Then, we had to prove that he wasn’t going to improve drastically. I can’t remove the extra 3 pieces of his 16th chromosome. I can’t! I can’t make him NOT be autistic. She kept asking over and over if he would have a chance of NOT being disabled.

Where the hell is my easy button?

This should come with an easy button.

Seriously, life with a child who has a disability isn’t hard enough? Between the SSDI thing, trying to get OT STILL for my child.  Aetna, I’m talking to you and your claim department!, I’m going to need my two buddies tonight Ben and Jerry and maybe my boyfriend Eric. Pam, you aren’t going to barge in this time with the vampire emergency, right?

Oh No He Didn't! Eric, I'm yours!

Eric the Viking Vampire....why do you tease me every week with your sexy body and those lucious lips?  Please forget that Sookie and pucker up with me.  I swear you'd enjoy these lips.  Pucker up baby!

Shame on you Jennifer Aniston/yesterday's Two Truths and a Lie

I thought  you had more class than to reference the "R" word!  As a parent of a child who will be forever associated with the "R" word I take offense to that word being used.  It is no different than using the "N" word or the "F" word. 

My children know better than to call people words that could be hurtful in some way to someone.  As a adult you should know better as well.  I take offense to you comparing yourself to my child.  He's so much smarter than you.  He'll know not to say this word!
The "R" word clip

1. I am a history buff! I love to learn all things I can about historical events and would plan vacations around them if I could.

True:  On my honeymoon I was more excited to see the Mayan ruins than do things that honeymooners do :)


2. Jon and Matthew, my twins, are identical.
False:  Fraternal.  We saw we have matching his and hers.  Matthew is brown haired and brown eyed like George.  Jon is blonde hair and blue eyed like me (except I have green eyes on most days).



3. I have made it my life mission to educate people on Chris' genetic syndrome and will do all that I can to help others in the same boat.
True:  Enough said :P

PINT/ONHD: Talk to the hand

I had an Oh No He Didn't typed up last week all ready and forgot to ask The Drama Mama to post it for me.  My Bad, so I'll put it here still.....

My oldest, I love him something fierce! There was a time (4 years of time) when it was me and him against the world! But....he's in trouble with a capital T! He was on vacation with my parents for a week. He called me up on Saturday and said "Happy 40th birthday mom!" I was thrilled he remembered my birthday. The hitch? I'm 32 not 40! I told him I was 32 and not 40. His response? I knew one of my parents would be 40 on their next birthday and since you act older than Dad I though it was you! Oh No He Didn't!? I act older because someone has to be the mature one of the two of us! My child seriously thought I was 40! Grounded.....For Life, I tell you! No playstation, no I-Pod, nothing!