Monday, December 31, 2012

New Year's....

Usually I forgo making New Year's Reservations. I mean resolutions. I figure why set myself up for failure? Instead I make New Year's Wishes. Since my wishes haven't come true  for 2012, I am so surprised that George Clooney did not show up on my doorstep to whisk me away, I have decided to make a combination list of wishes, hopes and resolutions.


  1. I resolve to begin running again. I wish for motivation and hope for time in order to "just do it"
  2. I resolve to be a better friend, to be there more for those who need it. I wish that they do not need it too often (because, really who wishes misery on their friends?), but hope they know they can ask me for help.
  3. I resolve to give up Diet Coke. Cold turkey. Beginning Jan 1st. I hope I have the willpower to abstain. I wish my family patience in dealing with me being grumpy in the morning.
  4. I resolve to spend more time hugging my girls and less time screaming at them. I wish for more patience and hope they learn behave like those perfectly behaved children my friends brag about.
  5. I resolve to read more at night and spend less time watching Reality TV. I hope for the Real Housewives not to be so addictive and wish to find new authors who will enchant me.
  6. I resolve to less time venting and more time rejoicing. I wish for less roadblocks for Boo and hope Tia continues to remind me how lucky I am.
  7. I resolve to keep a cleaner house. I hope my family learns to clean up after themselves (especially crazy puppy whose dog hair is driving me nuts!) and wish for a cleaning lady.
  8. I resolve to find balance in my life, between work/family/Boo's therapies. I wish for George Clooney to show up at my door and hope he says, Don't worry darling I've taken care of everything. See the maid, the live in therapist and I have a gazillion dollars so you no longer have to work. (sorry hubby!)
What are your resolutions, hopes and wishes?

Friday, December 28, 2012

My favorite day of the year

Today is my favorite day of the year. Well, tonight actually. Tonight is the night that Tia and I have our annual girls night out. Just the two of us, no children and no husbands. Not that we do not love both. But this night we go out to dinner, share a bottle of wine and just catch up.

I hope everyone has a fabulous weekend!

Thursday, December 27, 2012

New Rules

Having survived the 2012 holiday season, I have determined new rules for Christmas 2013:

  • The person who gives the gift must put the gift together. This includes, but is not limited to: horse stables, Barbie houses and the Euro-grow-with me chair. (By the way, the chair is the BEST GIFT EVER. Just a pain in the knees to put together.)
  • If you are going to buy said gift that requires a  degree in rocket science to put together and you are not available for assembly you must provide the wine.
  • Nephews who come for Sunday brunch should say thank you. Not ask why there isn't enough corned beef hash. (Because honestly, YUCK I didn't think anyone would be eating it anyway).
  • Nephews should not ask, while in the midst of cooking the brunch and then cleaning up for me to teach them how to drive a standard. And then be surprised when I say not today.
  • If you are going to participate in our Yankee Swap, at least have the gift look like you spent $20. Do not give a candle that I know you spent $5 on.
  • If you are going to give a gift to the girls that takes batteries and makes annoying noises do not be surprised when my husband calls your house, cell phone, office and plays the toy on it's loudest setting for your pleasure. Especially when it is a piano that plays Linus & Lucy. Non-stop once Boo figured out how to hit the button.
  • And do not be further suprised when he calls you at 2am. (yes, yes he did)
  • And lastly, if you are going to give Allie a make-up kit with 72 shades of eye shadow do not be surprised at the revenge gift I am planning for next year!
What are your rules?


Wednesday, December 26, 2012

We did it!

We did it! We survived an influx of company, three different Christmas celebrations, Christmas Eve Mass and Christmas Day.

We survived playing Santa and putting toys together. (My husband and I have a new rule...who ever buys the gift puts the gift together!).

A good time was had by all, even if we are all exhausted.

Poor Allie. She & Boo have been sharing a room while the company is here for the week. Boo usually wakes up early and then (generally) will talk herself back to sleep. Except now she is in Allie's room and sees Allie when she awakens. So poor Allie has been awoken every morning at 6am. And, thank goodness for older sisters, reads to Boo in her room until she hears the adults get up.

Except this morning. Because today Boo woke up at 3am. And thought it was playtime! By the time I realized that I wasn't dreaming and I was hearing Boo shout, ALLIE BOOK with joy, I ran to Allie's room. Boo had managed to climb onto Allie's bed, stand on-top of her and drop the Princess Book onto Allie's head. (see what physical therapy can accomplish?)

Poor Allie! Who is such a good sport. As I took Boo from the room, Allie said that it was okay, she would read to her. Until I told her it was 3AM go back to sleep!!!!

Monday, December 24, 2012

It's official...

I have become the Clark Griswald of our family.


I hope you and yours have a Christmas full of peace, love and understanding.

And for all of us moms with children home on Winter vacation, I wish you to receive patience and wine.

Trust me, the wine will help with the patience!!!

Merry Christmas :)

Thursday, December 20, 2012

Mom the year....so not


This is really in poor taste with what happened in CT and to the poor families who are truly suffering.  But oh well….here I vent!

Last night we took the girls on the Polar Express. A friend works it as Santa and was able to comp some tickets for us and his grandchildren who are Allie/Boo’s age. The other kids had so much fun. Boo was okay. First when the elves came she freaked but they were very nice elves and she ended up high-fiving them until Santa got on the train. Then all bets were off. She freaked! She was fine when he was at the end of the train, away from us, but when he talked to the kids she started screaming for the elves to “COME ERE” (away from Santa). She got really nervous that they would be hurt, I guess. Then he walked to us and tried to talk to Boo. She tried to hide in my shirt. She didn’t cry but she was terrified.

The thing with Boo is that she doesn’t cry, she retreats into herself. Which to me is more heartbreaking. Santa left the train and all was well.

Until this morning….when I left the house wearing the wrong shoes, forgot my badge, went to CVS to find out that the insurance rejected Boo’s medication (CVS is awesome though and is figuring it out for me), get to Boo’s school to find out that this morning is their Christmas play and that Santa would be making a visit. So here I am at the school, mom of the year not knowing about the darn play, wearing the wrong shoes. So I send a quick text to work saying I’m going to be late. EXCEPT I am not, because the aides tell me not to stay. That Boo won’t realize I am there anyway and they know I have to work. Then the aide I love, tells me it will probably break my heart to see Boo not doing anything when all the kids are acting out the  gingerbread play and Boo just stands there. That they promise to take care of her, and when Santa arrives they will keep her in the back of the room and if needed they will go for a walk during that time.

So I left.

And I HATE THIS!!!

I hate that I was relieved not to have to sit thru the freaking play. But more that I didn’t want to watch her sit there. That I am a jerk of a mom who didn't sit and support my child doing the best she could. I also hate that I don’t want to be here, at work. I WANT to want to be at the school.   

I suck at this.

I have TWO presents for Boo for Christmas. If I am being honest, if it wasn’t for Allie I wouldn’t even have Christmas. I mean I would still buy stuff for family, decorate and be in the spirit. But I wouldn’t have to deal with this whole crap load of crap feeling that Boo doesn’t WANT anything. She is content to have her puppy. Heck, I would probably be more in the spirit of the holiday if I could just relax and not let other's expectations affect my own.

But because I know if she doesn’t have something from Santa that is going to open a whole lot of questions from Allie. On top of it that family is making me feel like crap because they think I should buy stuff just to fill the tree (for both girls) regardless of the fact that one I cannot afford it and two that it make me depressed to see all this stuff just sitting there and Boo not using it at all—her room currently has 2 baby carriages, a high chair and cradle that were Allie’s that she is not interested in at all.

The rational, sane part of my head/heart reminds the flipped out side that last Christmas Boo wasn’t even talking so be happy with where she is. And I am, I promise.

But I am also sucking at this!!!!   

Monday, December 17, 2012

I'm a coward

This morning I sent Allie to school uninformed. I did not discuss the horror in CT with her this weekend. Oh, the news was on periodically. But the news is so out of her interest zone that she didn't pay attention.

There was mention of the horror at Church. But again, she barely listens to the priest on a good day. If it was discussed during CCD, Allie didn't mention it.

I did not deliberately shield her from the horror, but I did not expose her to it either. And this is why I admit my cowardness. Because I know at school today there will be talk and discussion.

I am very good at rationalizing. Allie won't internalize what happened in CT. She will never think that it can happen to her. By living with Bridget and being exposed to hospitalizations, Allie already knows that bad things happen to little kids. She never has made the jump that it can happen to her. I also believe that Allie is still so innocent. How can a girl who believes in fairies ever comprehend the horror of small children being executed?

This weekend, Allie asked me if a Fairy could be special needs? For once, I was at a loss for words. Allie went on to say that she hoped to go to Never Land with Tinkerbell and see the Winter Woods. But she wondered if Boo would be able to go with her.

Since I literally had no answer, she came up with one on her own: They would sprinkle Boo with a "little" pixie dust, then Allie would hold her hand. Since Allie would do that for Boo,  of course (!) the other fairies would do the same if one of them had special needs.

Because, in Allie's mind, you take care of one another.

And this, my friends, is why I let cowardice prevail. Because innocence should be preserved as long as possible. I do know that Allie will hear about the horror in school today. I plan on leaving work early to make sure I am home when she gets there. And I hope that she continues to believe that just because horrible things happen to other people, she is still safe.




Friday, December 14, 2012

To all those in Conneticut

Lately life has been tough. The holidays, birthdays, just general Boo-ness. But my child is home. She is safe and sound.

My thoughts and prayers are with the parents and family members who are all suffering today.


Have you heard of Story People? They seem to have great sayings for every moment in life. Even tragic ones. Tia found this one today:
www.storypeople.com   


Just as those without "special" children cannot possibly know what we go through, we can only imagine what the parents, friends and families are feeling at this moment. And be eternally in awe of their strength.

We can also hug our children and be grateful. Grateful that at this moment we have more joy in our lives than we can ever appreciate.

 

 











Thursday, December 13, 2012

A pet peeve


“Oh she will be fine”

I swear if I hear that phrase one more time I may not be responsible for my actions. And to hear it from some one who is a family member and should know better? Well....I bet their definition of fine and mine are quite different!

Here are some examples of where we differ in opinion:

Boo acts like a normal 4YO—only if a normal 4YO cannot understand that I am mommy and not the nice lady in the grocery store

Boo is just a late walker—sure, most children need to use a pediatric walker for 9 months before they are able to walk independently

Boo is a late talker—oh, thank you! I will cancel the 2 days/week therapy sessions.  

Boo should be able to eat cheese if she wants to—nope, see how she is screaming? That means she is constipated and in need of relief. Have you ever heard of the Chocolate Bomb? I really recommend it.

Boo doesn’t need a sweater it’s 70 degrees—sure, she is warm now. But in about 5 minutes she will get a chill and turn blue in her hands/feet. Trust me we’ve been to the ER enough.

Just let her cry it out—this during an EEG—they were amazed that she could cry/scream/kick for an hour and 15 minutes. That 10 minute rule, yeah right!
 
What are your pet peeve statements? And how would you really like to reply?

Tuesday, December 11, 2012

Advice welcome~

Recently I was asked: Why isn't Boo potty-trained yet? She is 3 & 1/2

I wanted to reply: Because I like supporting Pampers. They seem like a nice company. (this was during the weekend that I became an idiot).

But the truth is, I just don't think she is ready. She cannot tell me if she is hungry, tired, bored or why she is throwing the baby doll out of the baby carriage. She cannot help with getting her pants on or off and she could in no way get herself onto the toliet.

Then I second guess myself and think that in some ways I think she might be ready. 

The other night she took my hand, said potty and walked into the bathroom. I put her on the toilet and she sat for a minute. She told me she was all done and got off. Nothing moved, so to speak. But I was so proud of her for sitting there for a minute.

Over the weekend we got together with some friends and one of the moms said to me, "Oh Boo isn't trained either? Now I don't feel so bad about K". Okay, first I was thinking wow you are holding up your 'normal' almost 3 year old to Boo's 4 year old standards--yeah Boo! But at that exact moment her daughter came up to the mom with diaper bag in hand and proclaimed "I NEED CHANGING!". So, my second thought was, wow your daughter can tell you she needs changing but you don't think she is ready for the potty?

My third thought, you jerk-Kerri-here you are judging another mother when you are so irked that others judge you/Boo. (Yes, I frequently yell at myself and call myself names).

It also made me question, again, how to train Boo. With Allie I had a deadline. Her daycare only went to an age and she HAD TO BE TRAINED by 2.9 years for the new preschool. I started early, totally improvised and remember to this day me thinking to myself that there is no way to teach some one how to use the toliet. I mean think about it. How do you describe what they are supposed to feel in order to get them to the toliet in time. With Allie I literally put the big girl panties on and she peed the floor. I remember saying to her, see what happened? If you think it is going to happen again run to the bathroom! And if you do that, I will give you 3 M&M's (yes, 3!).

It was a long process, to say the least. And we went through a lot of M&M's.

But how to train Boo? I am completely unprepared. I have no idea where to start. She has such trouble communicating, she cannot self-dress, she cannot manuever easily into a chair (even if I got a portable one). And do not even get me started on her constipation/diarrhea issues.

I do not want to set her up for failure. I also do not want to be lazy. As much as I enjoy supporting Pampers and Baby wipes, they do make life easier. Her GI doctor told me that due to her low muscle tone, potty training really wasn't recommended yet. Developmental medicine told me that realistically she wasn't capable of knowing when to go.

That has been my excuse, really. That I do not think Boo is ready.


But then she took my hand and went into the bathroom.


Boo has proven doctors wrong before. Maybe she is ready, I at least have to let her try.

Just not tonight because I have to make cookies....
 



Monday, December 10, 2012

A letter to new "special" moms

I often say that Boo is not found anywhere in What to Expect. Nothing against that book, in particular, but it doesn't really prepare you for parenting in the world of special needs. Now almost 4 years later I figure there are definitely three types of books needed
  1. For parent who receive just what they were expecting: a happy, healthy baby
  2. For parents who know they are going to have a special child
  3. For those of us who rouse the minute after giving birth and discover that they are in no way prepared for this unhealthy, unhappy baby
All of us love the child, regardless of which category they might fall into. However, for moms like me who were expecting child number 1 and got child number 3 a little advance notice might have been helpful.

Here is a not-so-short-list of things I would tell a new mom who just learned her life would never, ever, forever, not be What She Expected:

  • The NICU nurses are awesome. They will tell you to take a walk, to sleep and let you hold your baby. It's okay to cry around them, because they understand when they are not taking care of your little one they are taking care of you.
  • The Doctors don't know everything. Sure, they try to be all powerful. But the amount of science out there, combined with the limited about of understanding, leave a lot of room for improvement. So go with your gut. In the end you do not have to like the doctor, but you have to respect them. So if you do not, find a new one. They are not all the same and they are all replaceable. You are not.
  • Yes, eventually you will brush your teeth. Just not today.
  • Therapy begins as soon as you are able to put two words together. Do not listen to those who say they are just 'behind'. Go with your instincts. If you think your child should be rolling over, call Early Intervention. Do not wait for your pediatrician to be on board. Demand it. Honestly, they probably want you to start therapy but are afraid of hurting your feelings. I had one doctor tell me that most parents "aren't ready to hear" that their child is delayed. So they wait for us to tell them.
  • Yes, it is possible for a child in their first year of their life to meet more doctors in one day than you have in your entire life. In fact, they may meet more doctors, nurses and technicians than the number of people at your Town Hall Meeting.
  • No your arms will never tire of holding and carrying your baby so she doesn't throw up. But the Snuggly is a fabulous invention. If you do not have one, beg for one. Then ask some one to teach you how to put it on without throwing out your neck or (yes, I speak from experience). Added bonus of the Snuggly, you get to brush your teeth.
  • You thought you became a parent, but in fact you became an advocate. 
  • Find your "safe person" and create your village. You will need to have some one to be strong once in a while when you need to crack.
  • And if you can, find another mom who has been in the trenches longer than you. Learn from her and then pass that knowledge on to the mom that comes after you.
  • You will become SUPERMOM. Defender of the innocent, advocate of the needy and the most loved person in the world.
  • This is still the best thing that will ever happen to you. After all, the most treasured memories are the hardest to come by.
  • You love this child, and it will all be okay. 
  • Cracking is okay. It will make you stronger in the long run and show you what you can handle.
  • You will be okay. I promise. Your life has changed, and this is not the child you planned. And that's okay. You probably weren't the parent they were expecting either.
  • Your child's milestones will not be found in any book. But you will more accurately remember them. So when you are sad that your little wonder isn't walking yet, remember how excited you were that they didn't have to see a specialist that week.
  • Perfection just has a better definition now.

That is what I would tell a brand new parent in the NICU.
     


Thursday, December 6, 2012

As if the holidays are not stressful enough?

I am filing this one under another important piece of information that is left out of the parenting manual that no one gives you. Last night Allie left a note for her Elf, Max. I am unsure if you were told about the Elf on the Shelf (it was left out of my manual). But Santa sent Allie's when she entered first grade. I thought for sure she would say, hey this is a doll.

Not my Allie. Not the true believer. This year she started leaving notes! Now not only do I have to remember to re-hide the little red bundle of joy, I have to write back! In a handwriting that is not my own. Last night, this is the note she left:

Why does Santa say I have to work harder? Does Alex like me? Do you want a dog or a cat? I got to see a whale show. what is your favorite game to play? Is there dogs at the work shop? Do you ride reindeer? Go up stairs and take a left if your at the a door go the other way. Go straight if you see a cottage go in it me and Emma decorated it for you! Do you know Benjamin Button?

I wanted to write, Well Santa says you have to work harder because you were an absolute bear to your father this morning! And to tell her that at 9 years old she shouldn't like boys. Instead, I sent a plea on Facebook to find out which of her friends had a Benjamin so I could be a good Elf and write a proper response. (How much do you want to bet it's "THAT" boy's elf?), I wrote in my left hand for about a minute and then figured if she cannot figure out that this doll isn't really going to the North Pole every night then I am going to take a chance she won't recognize my handwriting.

I am sending very un-Christmas like vibes to whomever invented this torture.


Tuesday, December 4, 2012

Being proactive

For the past couple of years, I have become depressed at Boo's birthday and Christmas. Which is kind of depressing in itself when you think she is only four years old! I just have never looked forward to the 'events' because, through no fault of their own, friends and family have given inappropriate gifts.

Oh, they haven't meant any harm. But people buy gifts that are chronologically-aged appropriate. Not where she is developmentally. So after every event, I would be down. It got to be that I wasn't looking forward to this year at all. Instead of wallowing (okay, I wallowed for a moment or two) I decided to be proactive.

I e-mailed any family member or friend that I knew would be giving Boo a gift. I sent a list of links and explained how the item would be useful. I included the price and a disclaimer that I knew this wish list was pricey, but since Boo's birthday and Christmas were so close together they would only have to buy one gift. Added bonus, they could collaborate on the gift. Either through gift cards or with one another.

I was honest. For example, I explained that the trampoline was not for play (well, not really) but for muscle tone, sensory and learning to jump. That I was not looking for some one to buy 'me' a chair, but a better chair for Boo to reach the table. She is too "old" for a booster seat. I want her to be a part of the table. This chair will help her with stability, etc...

And it worked. For Boo's birthday she got things she could use. Things that made a direct impact on her life. The trampoline? Within 8 days she was jumping! A year of therapy and all it took was having the tool available.

So, yes I felt incredibly guilty sending the e-mail. Like I was asking people to spend money on Boo. But in the end it worked.

What works for you? How do you get your friends and family to contribute to meaningful gifts, rather those you have to donate to another child?

Monday, December 3, 2012

Monday confessions V10

Five ways I escape....

I take the long way home from work.

Any of the Real Housewives shows.

Offering to walk the crazy puppy.

Girls night in.

PTA meetings (sad but true).

Wednesday, November 28, 2012

Don't steal my idea now....

Last week before we left for Disney, I was in a panic. Boo elopes, she has gone missing for short (thank God, SHORT) amount of times. If we are in the backyard and blink, she is in the front. She managed to escape a therapy session, school and her bedroom. We have been so lucky that we (or some one) has been able to chase her. 

But the fear never stops. 

When we left for Disney I made up a little sign and used packing tape to laminate it. It went something like, "My name is Boo. I am severely developmentally delayed. I cannot tell you my name or age. If you are reading this, my mom is freaking out. Please call Kerri at XXX". 

When we got back, I noticed a friend on Facebook was using a Nike product combined with her IPHONE to track her running. I thought, YES This is what we need! Since Boo will not wear a bracelet or necklace and I am at my wits end trying to keep a ponytail in her hair, I thought something in her shoe? That would be perfect.

Unless of course, she threw it in a fire or out of the jeep. Then that would be a very expensive OOPS. But, if it would work for her or in my moment of philanthropy any child/adult who if they go missing would not be able to help themselves, it is worth the risk. We just would keep our promise of never letting Boo wear shoes in the jeep!

So, I wrote NIKE. I got a response which is slightly better than the no reply that FOX News, the Boston Globe or my local newspaper provided when I wrote to Ann Coulter. But still, the reply made me laugh:

I appreciate you writing us with your idea of having a GPS tracker in Children's shoes. Your idea is wonderful.

At this time, Nike is unable to accept outside ideas. This is primarily due to the problems in adapting those ideas to fit our objective, but also because of the ownership issues, which could be raised if we happened to be working on a similar idea at the same time. Consequently, it is our policy not to share outside ideas and not to use those ideas in any way.

Thank you for your interest in Nike and I hope you have a wonderful day.
Well, at least they hope I have a nice day. And that my idea is wonderful. But really, they cannot accept outside ideas? I know there is probably some legal reason why they have to respond this way. So, Nike just do it, make a product that will keep our kids safe.

I promise you,it will be much more rewarding than making athletes faster.
 

Tuesday, November 27, 2012

Time just flies....

Boo turned four today. I am amazed how the time has gone. I find it is kind of funny that her milestones are recorded in her medical record. I never really have to wonder when she first sat up, I find it in some EI report or doctor report. This makes filling out the start-of-the-school year forms MUCH easier to fill out.


I am impressed that the mom who wore gloves to change Allie's diaper (yep, me) now looks at a hazmat and thinks to herself, well Boo is no longer constipated. I can now deal with vomit, drool, heck any type of body fluid with out embarrassment. Heck, I recently changed Boo's diaper on a bench in the Animal Kingdom. I swear the area was private right before I took the diaper off and around the corner came about 50 other sightseers!

I am still astounded that Boo's first word was "Allie". She might still call every woman (and sometimes her father) 'ma' but "Allie" is reserved for her favorite person. I love that I know by the tone of her voice when 'ma' means "Mommy". I crack up that a child that has never lived in the city has a Boston accent. I think it is all the times spent at Children's!  

I am thankful for the doctors, nurses, therapists and teachers that have made Boo all that she can be. Which frankly, was more than any of us could hope. Although, I do think the doctors should send me a thank you note for providing for their child's private school education! Especially the one who told me spinal surgery was a 'piece of cake'.

I am so in love with this girl. When I had Allie I was one and done. I never thought I would have the love, the time or the patience to love another child. I am still in disbelief that I do. I think back to those first days in the NICU, when I never imagined that this child who I barely knew would live. When in a moment of sleep deprivation and worry I actually forgot her name for one (I swear, brief) moment. 

I never imagined she would deepen our hearts and strengthen our family. She also strengthened our friendships, new and old. Some friends became acquaintances, true friends became family members. True, faithful friends became our support system.  



Four years ago, I never dreamt that she would have a friend. One with DS who would use the sign for "B" to call her friend, Boo. That this girl's family would tell me that "J" would use the sign all weekend long. The "B" sign no longer stands for anything other than Boo. That this mom and I would be in awe of our daughters. Two girls with completely different diagnoses would meet and become friends. 

Or that a little boy "E" in Boo's integrated class, one who it the peer child with a bad-ass attitude, would take Boo under his wing. He sits next to her during snack and helps her. He makes sure that she gets her turn on the slide at recess. Boo has turned this trouble-maker into a hear throb. His mom told me the other day that when we were on vacation, he went into class kicking and screaming.

She and "J"'s mom asked me not to go on vacation again, without forewarning them.

 Truthfully, I wouldn't change a thing. Not the 14+ doctors, not the amount of time spent at doctors offices (although I do kind of wish I could change the commute!), not the time spent in therapy. If I had one wish, would I wish that she was perfect? Well, to me, she is already perfect. So if I could make a wish on the birthday cake (that she refused to eat), the wish would be to know her diagnosis, so I could understand her prognosis.

Happy Birthday, my Boo. I love you more than words can say.




And so does everyone who meets you. 

Monday, November 26, 2012

Monday Confessions V9

Monday confessions....five things I fear

That Allie will no longer be in love with Boo. Right now Allie is Boo's strongest advocate. How do I prevent Boo becoming a burden and not a joy?
 
That I will not be strong or patient enough to be the mom my girls deserve.

That my marriage won't continue to be strong. It's already been stressed with longevity and Boo. Did you know that parents of special needs children have a divorce rate of twice those without?

That work will not continue to be understanding about my flexible hours. Especially this week, when my husband is away and I play single mom.


That Boo will never say "I love you"

 

Wednesday, November 21, 2012

Recovering from vacation....

One of the reasons I am always so hesitant about going away, other than the safety factors when it comes to Boo, is coming home. Now to be honest, I love being home. In my bed. Alone. Did I say that clearly....ALONE as in no child in a 10 foot radius. As in no child's foot (finger, toe, hand, nose,hair) in my nose, back or any other place they manage to get comfortable. It even helps when we come home and my husband is immediately on duty. Not that I don't love when he is home...but eight days of togetherness with one or both of our children sharing our bed and each one of us is left with an inch of mattress real estate?

Amazing, how one little girl can take up so much real estate.


Being alone in a closed room...that is dream come true my friends.

Does this dream come true? Well, not so much with Boo. It takes at least 4 nights of "cry it out" boot camp before she realizes that I am not her cuddle buddy. When we got home she was sick, so we warred with do we let her sleep with us where we can make sure she isn't aspirating or do we decide to initiate project back to sleep without interrupting mine.

Safety won. I slept in her room on the guest bed. Husband got the cherished night alone. Without a child coughing on them, kicking them, drooling on them, having a foot (finger, toe, hand, etc...) shoved up their anywhere. 

But last night? Last night I was determined. Determined, I tell you to sleep. ALONE. 

It did not start off well. She cried for me, for Allie. Telling us she was all done 'night night'. She started coughing. I was afraid she was choking, but erred on the side if she was crying she was breathing. I listened very carefully to make sure she wasn't vomiting. I sat firm. On the other side of the door.

87 minutes later. Quiet. (by the way, what is UP with the professionals that tell you that a child will cry themselves to sleep after 10 minutes? I want them to meet Boo!). By 8:30 both girls were in bed. I had a nice glass of wine and a quiet rest was had by all!

Tuesday, November 20, 2012

Thanks...

Thank you to,

All those who hold me up when I fall down.

All those who look at Boo and see the miracle that she is.

All the doctors, nurses and everyone at Children's Hospital. It is thanks to you that my child is home and healthy.

Thank you for (put whomever you pray to here),

Allowing me this place to vent, to cry, to rejoice and learn.

Giving me insight and innovations.

Giving Boo the best big sister possible.

Giving Allie the best little sister she could ask for.

Giving me the strength to advocate when needed.

Giving me the patience when I think I have none left.

Giving me the knowledge to know when I do not know enough.

Knowing that I never would have thought I would be a good enough parent to a child like Allie let alone Boo. 

Thank you for proving me wrong.
 

 

The (truly) Happiest Place on Earth

Last week we took the girls to Disney. I did not want to go. That is not an understatement. My parents guilted me into it. They wanted to take Allie back before she lost the magic. I didn't want to take Boo and also didn't want Allie going without me, so I caved.

And I am so glad that your mother is always right! The girls had such a nice time. Boo did awesome on the plane. Allie as so excited, which I expected. What I did not expect was the courtesy of the Disney staff. They allowed us to use our stroller in line, gave her front row seating so she could see the shows and most of all? The characters were so kind and friendly. 

Allie is in love with all things Princess and Fairies. I was worried about Boo. How would she react? Should I bring her close or just let her hang in her stroller. However, the Princesses and Fairies wouldn't let me! They asked for me to wheel Boo over and were so kind. They welcomed Boo to touch their clothing, their hair, provided hugs and kisses. I was amazed. I thought for sure Boo would freak. But instead she looked at them and saw magic. 



We visited another theme park while we were in Florida and it just was not the same. They had little or no accommodations for the handicapped. Boo couldn't interact with with the animals like she could at Disney, the handicap seating was limited viewing. If I had not been to Disney I wouldn't have known. 

But now that I do, I will be saving for another trip. Because to see this look in my Boo's eyes is worth every penny we spent.


 

Monday, November 19, 2012

Monday Confessions V8

Four things I am thankful for....


Allie had the BEST BIRTHDAY ever when surprised with a trip to Disney by her grandparents. (Although I worry that next year they are NEVER going to meet her new expectations!)

My husband, the girls and I survived 8 crazy days vacationing with my parents. And we all still like one another.

Crazy puppy did not ruin my sister-in-law's house while they babysat. But my brother-in-law is NEVER allowed to get a puppy.

This photo, because for one moment, Boo was a normal little girl enthralled with a Princess.

 
 There is A LOT more that I am thankful for....but for now this picture says it all.
 

Sunday, November 18, 2012

YIKES


Last week, I’m traveled with Boo for the first time on an airline. 

I wrote this post before leaving and forgot (in my temporary insanity) to post it! So here it is with an update....

I am freaking out. I KNOW people do this all the time. That people with children, those with special needs and those who are perfect, manage to fly all around the world without incidence.

But they are not Boo’s mom. Allie’s mom, for sure could fly the world. I have flown with Allie and it has been a great, fun experience. I never had any anxiety or worry. This time, with Boo? I am a nervous wreck. I am worried about getting her through security, about making sure the airline will accept her need to sit in front of the wing to decrease the sensory overload. I am worried that she will disrupt other passengers, because I was one of those judgmental people who used to think can’t that mother control her child? (Stress the WAS) I am worried that my worry will be transparent and stress her out.

How do I combat worry? Knowledge and obsessive planning! I got a note (two actually) from her neurologist saying that she had sensory issues and needed to be accommodated on the flight, in the hotel and at theme park. I called the airline, paid extra for early bird seating and told them I had a handicapped child that would need to be allowed pre-boarding (it was worth the extra money). I called the airport to make sure that I could get her stroller and car seat through security. I printed out a label below to pin to her t-shirt in the event she elopes:


 
Hello my name is Boo. I am unable to tell you my name or my age. If you are reading this my mom is freaking out. Please call her ASAP at xxx-xxx-xxxx. Thank you.


I thought I thought of everything. But yesterday (the day before the day before we leave) she woke up sick, with a fever, a croup cough and general malaise. We took her to the doctor who diagnosed an ear infection and possible bronchitis. I asked if it was safe to fly and was assured that we had enough days to get an antibiotic into Boo to make her comfortable.

So a new round of worries! How do I get the medicine (which needs to be kept cold) onto the flight using a carryon? The way Boo’s luck goes they will lose our luggage before we leave the airport! I recalled my friends at the TSA to find out what the protocol would be. I talked with her about Boo's sensory issues and the need for a car seat and carriage in the terminal. The lovely TSA woman (I don’t know why they have a bad reputation) was awesome. I must have sounded frantic, because to rest my mind she even e-mailed me the do’s and don’ts.

And this where my sense of humor came back, regarding taking child carriers onto the plane the TSA recommends that:

“Babies should NEVER be left in an infant carrier while it goes through the x-ray machine.  For information regarding what is permitted or prohibited from being in carry-on luggage, please refer to our prohibited items section on our Web site”

Okay, you just know that if this is a disclaimer on the directions that someone MUST have tried to do it!  With my humor restored, we just might survive the flight.  


UPDATE: Boo (and her mom) survived. She did great, even with the ear infection. :)

Thursday, November 8, 2012

The IEP

Today was the first anniversary of Boo's IEP. Last year I walked into the meeting having no idea what to expect. This is something else left out of that What to Expect book.....

Last year, when Boo entered the integrated preschool I was not in love with the program. I did not know how to be forceful with Boo's needs. I didn't realize that if it wasn't written on a piece of paper and signed off by 45 different people Boo would not get the level of care she needs.  Within 3 months her teacher realized that Boo needed more, and advocated that Boo continue in the integrated part-time but move to a program dedicated to special needs 1:1 education. Within 3 months of Boo starting that hybrid program she began to talk, interract more and just blossomed.

So, this year, I was more prepared. I read up on how to approach the meeting, what ideas to have at the ready, what concerns I may need to raise. Yes, I obsessed over this meeting.

And I honestly have to say, I was worried for nothing.


I have heard and read about the horror of the IEP meeting. And I am sure that my Polly-anna attitude is due to Boo being in preschool and not the lower elementary grade (or worse, the higher). Our town school system has such a unique program in place to capture children right after Early Intervention.

And it works.

I am lucky to live in a town that understands the quicker you start therapies in the child's life the more likely chance the child will respond. That is willing to give an almost 4YO an aide, whose sole responsiblity is to make sure that 1. Boo doesn't escape and 2. that Boo is engaged in the classroom.

What I didn't understand is why we couldn't just write, "Reviewed and Renewed" on the IEP. Instead of meeting for an hour, having to rewrite the plan and then send off the form for 45 signatures!

Dads are parents too!

I read this blog  They Walk Among Us posting by Robert Rummel-Hudson. It is a quirky little post about the mystical special needs father. They are such mysterious creatures they could have a support group with the Yeti, Big Foot and the Loch Ness Monster.

Now I know, Boo is an incredible lucky girl. She has two involved parents. Heck most "normal" children don't have 2 parents who love and support them. Let alone a big sister who tells the babysitter that Boo cannot have peanut butter because it is dairy (well you can see her confusion butter).

Do I make the majority of decisions for Boo? Yes, but her dad is 100% on her side. We split the therapy appointments so we both know what is going on with her. And I am usually the one who stays in the hospital or up with her when she doesn't sleep. I tend to do the majority of MD appointments. But that doesn't mean her dad isn't involved. It just means we have another child who needs a parent too.

He is the one who constantly goes over body parts, comforts her when she is frustrated and will blow bubbles for hours on end. He is more the playmate (to both girls) than I am. But he is never 'babysitting'. He loves to brag about how far Boo has come.

Because I have an understanding boss and Husband has a very nice schedule Boo's care doesn't fall on just one of us. We are both the bread winner and the care giver. This makes it nice because while we get burnt out, we can keep our  rule that only one of us can get crazy at a time.

I'm not bragging because I know I am not alone. Sure I am probably one of the few who's husband isn't lucky enough to be home during the daylight hours. But I know there are more involved dads out there.

I for sure know that they are not a mystical creature!


Tuesday, November 6, 2012

Things never imagined

When I became a mom I had absolutely no idea I would also become a mystical figure. I have morphed into Santa Claus, an Easter Bunny, a Leprechaun (don't ask), had to dress up for Halloween and become a fairy. Not just any fairy mind you, but the all important Tooth Fairy.

And did you know that every person has their own special fairy? Yup, me neither. I thought they were all named Tooth Fairy. But as I found last night. This, my friends is not true. There is more to this than when we were little. Now there are notes and expectations I never in  my life imagined.








 Not only did I have to think of a name (Annabeth--I am reading the Percy Series), I had to figure out what I like to do (ride Pegasus and Unicorns), did I know a tooth fairy named Celestia (nope, but apparently Annabeth recalled Allie reading a fairy book with a fairy named Zoe). On the back was a lovely picture Allie had drawn.

So Annabeth took the picture and tooth. She left a note of reply and a dollar bill. Allie woke up this morning and proclaimed: This is horrible! My fairy took my presents but didn't leave me anything. And last year I got FIVE DOLLARS!!!

Now, I was sure COMPLETELY sure that Annabeth had taken care of everything late last night when Boo was up screaming. I asked Allie if she was sure, did she check under all of her pillows. Nope. Annabeth is a foolish fairy who didn't realize that she was supposed to put the treasure right where Allie expected it to be. Except, Allie is kind of worried.


You see, last year she got FIVE dollars. And this year the Tooth Fairy Annabeth only left her ONE dollar. Allie said she figured out why:



"Wow, I guess you and Daddy were right. The economy is so bad even the Tooth Fairy had to cut back".


Lessons learned, my friends, lessons learned.




Monday, November 5, 2012

Monday confesions v7

I confess to being one of those undecided voters. Even with less than 24 hours before I vote, I am concerned that I do not fully endorse or heck even like either Presidential candidate. The local level, I am sure of whom I approve. But on the Grand Stage? I am concerned on many levels. 

Three simple questions I have about tomorrow's election:

  1. Do either of the candidates realize that the people of NY and NJ, who have so much going on with their lives right now, understand that their votes must count too?
  2. Do the candidates realize that if they spent as much money on the national debt as they have spent on advertising, calling my house 45 times in one day, traveling (planes, trains and automobiles) and support our Country would be completely debt free and the recession would be over? And we might be able to cure homelessness, healthcare and feed the poor?
  3. Do the politicians realize that they are supposed to work for us, those who elect them and not the lobbyists that paid for all that encompasses #3?


If either candidate could answer one of those questions, I would promise them my vote!

One question I do not have, is that our votes must count. Otherwise we cannot complain about the State of Our Union. So tomorrow, November 6th please vote. Even if our votes may cancel one another out it is still important for our voices to be heard.

Friday, November 2, 2012

Never, ever, ever drink Diet Coke after a Shot of Prednisone


My husband was so thoughtful and gave me Poison Ivy. For no reason, it wasn’t like it was my birthday, our anniversary or anything special. Just because he loves me so much.

Yes, I am planning my revenge now.

In my 40+ years I have never been allergic to poison ivy. Oh, I’ve been exposed. My husband is highly allergic and gets it at minimum once a year (one time the day before we were leaving for Vegas for our first away from Allie trip). But I have always been immune.

Until last week, anyway. It hasn’t been too bad except it started to spread. So I went to the doctor who I haven’t been to in years. (You know how it is, I go so much with Boo I figure I am covered) He gave me a shot of Prednisone and a prescription for the next 9 days.

HOLY CRAP! I feel like I am on some type of speed. I mean really, is this why people do drugs? I think in the past 24 hours I have eaten my weight in Halloween candy (heck yes I raided the girl’s stash). But the strangest thing? I feel like I am on speed. Oh, I already told you that. SEE!!

If this is what having ADHD is like, children (and their parents/teachers/anyone they come into contact with) have my complete and utter empathy. They already had my sympathy and definitely more patience than I ever could imagine. Before the Prednisone. After the Prednisone? I am wondering exactly how they manage not to be in the principals office for bouncing off the walls during class.


Today, I made the mistake of having a Diet Coke. At work, while having to concentrate on very sensitive documents. It was not a good idea. I could hardly focus and when I answered the phone, my coworker told me that I was talking too fast for her to understand.

Last night was the first night Boo has slept thru the night since we went to visit my mom a couple of weeks ago. I almost woke her up because it was 2am and I needed someone to play with. And hey, a little revenge for the sleepless nights she causes me! But I didn’t. I figure she is in enough therapy as it is, and I shouldn’t set her up for a therapist couch where she would say,

“Doc it isn’t my fault I cannot sleep at night. When I was 3YO my mom woke me up at 2am to play with me because she couldn’t sleep and had all this energy”

I tried cleaning the bathroom, but that woke Allie up who asked me:

          “What the heck are you doing? It is 2am!”

Yep, I see a therapist couch in her future too.

Finally around 4am I started to doze. And Boo woke up screaming! Isn't that always the way? Only 8 more days to go! It should get better, right?  Either that or I should be an ace with Words with Friends. I asked my husband, the Prednisone Poison Ivy king, how he dealt with the extra energy/ jitters. Turns out he has never taken the prescription as prescribed. Yes he felt a little jitter but not the hey lets clean the bathroom type of energy. Of course he never has that kind of energy. 

He thought since I had so much energy we should....I told him he gave me poison ivy and THAT'S ALL HE IS GIVING ME!!!

Oh yes, my friends....I am planning my revenge now. Please feel free to let me know your ideas on appropriate punishment :)

Thursday, November 1, 2012

Boo trick-or-treated!

For the first time in her almost 4-years, Boo went trick-or treating. She almost didn't make it----

kicking in screaming in her costume!


But as usual, Allie-Kat prevailed and smiles were quickly photographed!
 
 
Boo actually went to two houses with her pail. There is no photographic evidence because I could not figure out how to get the flash to work on Allie's IPOD and forgot my own camera.
 
But a good time was had by all. I hope you and yours enjoyed Halloween!

Wednesday, October 31, 2012

Being safe

Do you have a safe person? I wasn't familiar with the term, until I read "Shut Up About Your Perfect Kid" by Gina Gallagher and Patricia Konjoian. According to the authors, a safe person is the one who:

"Allows you to be confused and crazy"

"Listens to you, hears you, and encourages you to keep talking"

"Is clear, direct, and honest with you"

"Listens to you for as long as it takes"

I am so lucky that I do have a safe person. Tia. Tia and I have been friends since we were 12 years old. We have survived junior high, high school, her going to college at 18 and me going to college at 30. We have been together thru boyfriends and husbands. We have listened to one another, fought with one another and loved one another thru our lives ups and downs. Heck, we survived turning 40 together!

Surviving 40
Although we have not lived near one another since juniors in high school, she has been my best friend, my therapist and my rock.

 Everyone needs a safe person. A mom with a special needs child needs one more than ever. As much as I love and admire my husband, he cannot be Tia. Tia has listened to me brag about Allie. That first child where you proclaim their greatness. I have listened (I hope) to her rightfully brag about her wonderful son. 

Surviving toddlers
When Boo was born, Tia was the one person I could count on to listen and not always advise. She let me find my own voice and encouraged me to be Boo's advocate. When I wanted to walk in the NSTAR Walk for Children's Hospital in thanks for the care Boo received, Tia was the first one to join my team. She has made it every year since.

Surviving Boo

What I love most about Tia is that not only was she the first one accept Boo for who she is, Tia always seems to say or ask the right things. When I was freaking about Boo's surgery, Tia reined me in. She also knows when to pour the wine and when to just hand over the bottle.

The best thing? Your safe person will also lean on you.  Tia doesn't hold back because she thinks I am under too much stress. She knows that I need to be more than Boo's advocate. I have to be me.

Because of distance, we only see one another a couple of times a year. Unfairly, she has to travel to see me more than I can travel to see her. Being a safe person doesn't mean you have to live close geographically. You just have to be close at heart. And have access to text and e-mail.

My wish for you, reading this blog, is that you have a safe person. If you do not have one, I wish for you to find one. That, at it's core, is what I believe the 31 for 21 is about. Knowing that you have a community of support. One that listens, never judges, provides worthwhile advice that you can take or leave. Your child doesn't have to have Down Syndrome. You just have to be there for another parent.

My wish for you is to find a Tia and hold on tight.


Tuesday, October 30, 2012

Boo rocking out the hurricaine

When you have a child and there is a big storm you get inventive on how to pass the time!

video

Monday, October 29, 2012

Monday Confessions V5

How I prepared for Hurricaine Sandy:

1. Charged Allie's IPOD and DVD player in the event we lose power
2. Stocked up on the kid essentials: M&M's, Pirate Booty and Pretzel Goldfish
3. Stocked up on the Mom essentials: Pinot Grigio and Diet Coke


Stay safe everyone!

Sunday, October 28, 2012

A quiet Sunday before the Storm



Boo is content to cuddle (yes, we skipped Church)


Crazy puppy has his provisions

Yes, the bone is as long as he is tall



Allie has a craft-slash-bake project for me, we skipped CCD too (pray for me NOW)



Husband is at work, I figure he will be home sometime on Wednesday.




And I have bread, milk and wine.


It should be fine, right? And did I mention we have the cake that Allie won at the Boofest Cake Walk?

What can go wrong if we have cake & wine?



And pinot grigio? Happy Sandy everyone. I hope you and yours are safe!


Saturday, October 27, 2012

It's the thought that counts, right?

Of all the gifts my husband has given me: his love, our children and our home. He could've kept the poison ivy. I am still unsure after being ivy-free for over 40 years all of a sudden I am allergic. 

But my Saturday has consisted of first coming to terms with the fact that I am not immune and then finding:











Let's hope it works!

 










Friday, October 26, 2012

I'm dumbfounded

Yep, dumbfounded. In our 24hour news cycle, everyone has forgotten about Ann. And I do not want to give her more press. But I sent my Dear Ann letter to Fox News (local and national) and our local papers/news outlets. Yet none, to my knowledge have responded. 

Friends on Facebook have been patient and supportive with my rantings. And I admit to ranting. 

But why isn't this news? Where the heck is Sarah Palin? 

Are you as crazed as I am? 

Maybe it is because Boo is undiagnosed and therefore I do not have an answer for my ranting other than she falls into the category as "special needs". But knowing that in a previous age my daughter would have been called the "R" word, I continue to be incensed. 

I know that forgiveness and understanding falls under the Golden Rule. But if the person that offends never acknowledges that they did wrong, do we still forgive?

Not so easy for me.