Monthly Archives: November 2013

Happy Day!

Today Bridget turns five. FIVE. That is half a decade I didn’t think I would have with this beautiful child. I have a tradition. Every year I thank everyone who helps her be the best she can be.


Her school. Her teacher and assistants. Her classmates that include Bridget not due to inclusion but due to friendship. With their help she has found her voice. A year ago she was in class but quiet. Now she bosses her classmates at the top of her lungs. A child we were told would never speak shouts.

Her school therapists. They have the hardest job out there. They remain kind but strict, loving but firm. I honestly do not know how they care for the children in this program day in and day out. They are poorly paid, over qualified and have unending patience. We are so very lucky to live in a town where children with special needs are included and counted.  With the upmost care they have taught Bridget how to jump, how to draw a circle and how to be plugged into the world around her.

Her Spaulding team. She has the best bunch of therapists at Spaulding. They have become our support system, our friends and our race buddies. 


They care for more than just Bridget. Her SPT has helped Abby with her homework, or well tried to. Her OT has let Abby be involved with sensory play. Her PT has let Abby be a part of the obstacle course. It’s more than the therapists. The secretaries greet Bridget with a smile and a hug. The medical assistants whom we are not patients for pick Bridget up and listen to her babble. They meet David & I out for dinner. They see us as more than parents of their patient.

Her Children’s team. This year Bridget graduated out of three programs. Her MD list is down to eight. That’s right EIGHT. She still has her quirks but now only needs to see the other doctors in an emergency. She is STABLE people. As in stable does not need intense monitoring. As in has not been hospitalized in TWO years. As in only has to go to CHB twice a year.

Her friends. The little girl who invited Bridget to a birthday party. The friends that come over to our home because it is easier for her than going to theirs. The friends at our Irish pub who smile at her antics when we take her out for dinner. The friends that encouraged her all summer so we could have this moment. This beautiful moment:

Her family. The ones the read this blog and don’t get upset with me for my openess. The ones that know by reading this blog they are helping Bridget. The ones that don’t read this blog but show their love to Bridget by supporting her every moment.

Her sister.  Abby is aware that her sister is special. Each year the definition, in Abby’s mind, of special evolves. But what never wavers is her love and support. She is the reason Bridget went into the ball pit of terror in OT. Her name was Bridget’s first word and she is the first person Bridget runs to after school.

Today is Bridget’s Happy Day. And I thank each and everyone one of you for making it so.

Jailed!

Okay, I cannot believe she did it. DJ Jen took my crazy idea for a mix-tape and is making you all suffer from my craziness. The good kind of crazy, I think. I hope. Hey it’s Thanksgiving no one is reading posts this week, right?

Here is what happened: I’m driving along and almost got rear ended by a little old lady who couldn’t see over the steering wheel. In the background was Toby Keith:




I wasn’t hit in the head, like you might suppose, but it clicked in my head this song could make me go to jail. If I followed the directions. At least that is what Tipper Gore told our moms in the 80’s….


Just think, you are innocently listening to Steve Miller and realize that the cops will never catch you. So you decide to become Bonnie & Clyde or Joe &  Bobbie Sue….


After watching Grease for the 999th time this week you start to think hey the Beatles might be a good influence for Boo. You find Sgt. Pepper on ITunes and the next thing you know you are getting a little high with your friends. You begin growing strawberry fields while you see Lucy in the Sky. Then Don from Don of all Trades knocks on your door.

Of course you have no other choice but to RUN!




Thanks, Jen for letting my mix-up mind take over your Twisted Mix Tape!






Today I am thankful…

Today I am thankful for M&M’s. No seriously. You are thinking um Kerri it’s the week before Thanksgiving and you are supposed to give thanks for all the blessings in your life. But I am doing that next week, for a special reason. 

Yet I am totally thankful for M&M’s. First they are the breakfast of champions. Okay, not champions but mine. They get me through the work day. On a boring conference call? Pop some M&M’s believe me you will feel better. Abby even ratted me out to the school nutritionist:


My mom NEVER eats breakfast or lunch. Sometimes she has popcorn for dinner. But she made me eat shepherd’s pie last night while she didn’t eat at all. Do you know how gross shepherd’s pie is?


Here’s the thing, kiddo. As your mom it is not my job to eat healthy. It is my job to make sure you do.

Finish the Sentence Friday

I’ve written before about Boo’s wandering. It started about as soon as she came off the walker. If she is outside you blink and she has eloped. It is beyond scary to know your child will wander off and not realize she is unsafe. I even had a bright idea and e-mailed NIKE about putting a chip in children’s shoes.

They refuse, on principal, to take unsolicited advice.

So I remained scared and worried. A lot of my fear is due to Boo’s lack of verbal skills. Then a police officer friend told us about Safety Net by LoJack.

Let me state right here, I am not being paid nor has LoJack asked me for any type of endorsement. They have no idea I am even writing this post.

Safety Net is a bracelet Boo wears. It has a rocking purple strap and about the size of a watch. Okay, it is a tad big on her….but she is a petite little thing! She wears the bracelet 24/7. If she wanders we alert 911 and provide her name. Our local department has her signal ID. If we travel we let LoJack know our destination and they will alert authorities that we will be in there area.

Unlike cell phone and GPS signals, LoJack uses a radio transmitter that can be used in any condition and locale. Since we like the mountains, we were relieved. Her bracelet is waterproof. She can use it in the bath, the pool and the ocean. And if we can convince her the sand.


It is expensive, $400 for the first year. We asked our families to contribute. We let them know what we were doing and asked that instead of getting her a birthday/Christmas present this year they take whatever money they normally would have spent and put it towards her safety.

All responded with generosity. They understand that Boo doesn’t “play” and doesn’t need material things…but she does need to remain safe. While her bracelet will not stop her from eloping, it will help us locate her with a great chance of finding her alive.

The system arrived within a day. We put it on Boo. She did NOT like us putting it on. But now that it is securely on, she has been showing off her “bracelet” to everyone she comes into contact with. She has slept, bathed, done crafts (with grandma I was banned by Abby) and gone to school with it.



She has been wearing the “bracelet” about a week. She has asked for it to be “off” once and a while but for the most part has realized it is staying put! 

If you see Boo around town make sure you ask her to show her new rocking accessory.
 
 

You cheating scum

There are way too many country songs about cheating. I don’t want to be predictable….too much anyway other than mixing up Jen’s Mix. There are so many ways to cheat after all…



Don Henley’s voice, his passion over what was going on in Wall Street way before it was on the network news, long before the 99 percenters. Sure it was about the 87 crash, however I think it is still appropriate today.


When some of us decided to back a race over the people, they cheated on the American Dream. Martin Luther King, JR gave us the voice of reason. U2 gave us the melody.



When the social elite decided to send other men’s sons to war and kept their own safe and sound CCR called them out for the cheating scum they were.

 



I was a child in the 70’s, but 9-5 showed that there was a way to break that glass ceiling and to break the cheating bosses!










Being included

Last year I was humbled and so surprised when Boo was invited to another child’s birthday party. I remember writing that she was included, that the children in her classroom see Boo and not a child with a  disability. But I worried that she wasn’t really a peer. It ended up being a moot point, as we were unable to attend the party due to a family commitment.

At that time a friend wrote to me and said it so wonderfully that just that day her children, both of them, proclaimed Boo to be their friend. That in children’s minds they are all peers. It really is just us adults that make the mistake of thinking otherwise.

I have remembered those kind words. You see, Boo was invited to another birthday party. Yes, I was kind of worried and spoke to the mom (who is also Boo’s therapist at school) but those words kept coming back to me. I decided to be honest and let her know my fear. That we wanted to attend, but I didn’t want her daughter to be disappointed when Boo, well is Boo. The party was being held at a gymnastics center, there would be obstacles and activities that she just wouldn’t understand. She might become overwhelmed or disruptive. I honestly didn’t want Boo to detract from another little girl’s first ‘for real’ birthday party.

Thankfully, the mom completely understood and reassured me that all would be fine. I’m sure it helped that she works with Boo a couple times a week! We went and Boo had a great time. Sure, she didn’t participate like the other children. The teenagers running the party had to pay her more attention. They were accepting and kind. I only had to rescue her twice when she got overwhelmed. The older children attending the party made sure she was safe and the youngers ones just ran around her.

But she had fun! She ran around the obstacle course in her own manner. She ate her cupcake (and tried to eat the child’s next to hers). She watched her friend open presents (and tried to steal them). She squealed at the Princess goody cup and stickers. She proclaimed HAPPY DAY and HAPPY CAKE to her friend.


She was a typical kid having fun at a birthday party.  And just like that typical kid, she barely stayed awake for the ride home!

I am so thankful that last year a kind friend planted the seed: that adults see the disability not the children. I realized as I was writing this post that four years ago I never imagined this day. THIS day that Boo would be invited to a party not because of inclusion but because of friendship.

A happy day indeed.


Picture this…

It’s that time of year when our e-mail inboxes get slammed with spam from Shutterfly and Snapfish advertising discounts on holiday card orders.  All the cards they have in their ad displays a beautiful portrait of a family interacting so naturally hanging out in a field or by the beach.  Everyone is smiling and laughing.  You can almost feel their happiness.  I always think, “I could NEVER get a picture of my kids doing that”..  Worse, I avoid that formal picture because I know that Boo will have such trouble focusing on the photographer. She might look vacant or checked-out. 

But then I met Zach’s mom, Laura. Her reply? Well, of course you can!  I’d like to introduce you to Laura, an awesome mom and someone who taught me to relax in the moment of trying to get that ‘typical’ family portrait. 

 
And hey, my first ever guest posting on my blog!

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Photo Credit – Trace Melody

I’m a mom-tographer based on the Cape.  Every year around the holidays my schedule packs up.  Parents contact me sounding anxious to schedule a holiday session with their kids but apprehensive.  The conversation always starts out with the same phrase “I just want a few good pics of my kids.” And they hope to, “Maybe get a nice one of all of us”.  Then, their session rolls around and we rock it out.  I may show the parents one or two little quick glimpses on the back of my camera but I like to save the best for when they see their gallery. 

The gratitude for not only beautiful portraits, but also for a fun experience is what pours out of these families.  I love giving that experience to people.  Giving them a visual representation of not just what their family looks like, but WHO they are together.  Their connection and how they interact with one another.  Capturing their children’s reactions to their Daddy’s funny story-telling voice.  It’s the art of the family I always strive to capture.  And it’s not always easy.  Those amazing smiles usually come after some protest and maybe a few tears.  But I keep my patience with a few simple tricks that you can use if you’re going try and take a holiday portrait yourself! 

   Get outside!  Kids are naturally more relaxed outdoors.  The light is gorgeous outside and you’re almost guaranteed a few keepers if you shoot outside.  Preferably right around the 3pm mark. 

   Put their back to the sun!  People have this common misconception that they need to light up their kids’ faces by having them face the sun.  Not true.  Put their back to the sun and you’ll have some gorgeous results. 

 

 
  Turn off your flash!  Especially when shooting outside.  Flash is unflattering and gets rid of some very interesting shadows on the face.  Shadows show depth and make a portrait more dimensional.  Turn off flash.  You’ll love the results.   

  Take the pressure off.  Try to steer clear of phrases like, “Ok!  Let’s go take a picture now!!  Everyone look at me and smile!!  If you don’t smile no candy!!”  These phrases put pressure on the kids and will almost always produce less-than-desirable results.  Instead, try taking your children to a park or an unfamiliar field.  When your kids are involved in exploring, get low on their level and talk to them.  Talk to them about their favorite character from Sophia: The First, or Handy Manny.  Have your camera ready and when they glance up at you, press the shutter.  Their face will be natural and relaxed.  Even more so if you get them to laugh at you singing!  A much better smile will happen if it happens naturally rather than forcing it by saying “Cheeeeeese”. 

 
 
  If you have sensory sensitive kiddos, be aware of their triggers and head them off at the pass.  If they don’t like grass, bring a throw blanket to toss on the grass.  Or a low stool for them to sit on.  The problem I have when I try to photograph my own son (who has classic Autism) is that he sees me every day.  I’m not interesting to him.  So, I have to make silly airplane noises and wave my hands in the air to get him to notice me.  But once he sees me and thinks, “Hey, mommy is doing something pretty silly there”. That is when I’ve got him.  I can capture his laughs in-between my silly acts. 
 

And if all of this still intimidates you, you could always invest in a professional to help you capture your families.  Special needs families are personally a favorite of mine to capture because I KNOW how I longed for someone to capture our interactions as a family together.  I needed to freeze the period in time where my sensory-seeking child would press his face into mine so hard, he’d shake.  And his infectious giggle when his daddy would make him fly up in the air.  Those moments for me are priceless.  And when I can take a family who is convinced that we’ll never get a good shot of their child because they’re fixated on the car door, that’s a challenge for me and I adore the parent’s reactions when I show them the incredible results. 

 

Laura Fiorillo is the owner of Family Tree Photography located in Sandwich, MA.   Contact familytreephotography@hotmail.com
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I’d like to thank Laura and the parents who allowed us to share their photos to demonstrate how our children are just so beautiful. While we never got that formal family photo, our pictures are unique just like our family. I cannot thank Laura enough for prompting me to do the photo shoot. Remember I once explained how Boo does the full body hug? The one that just pours out her love and enjoyment? Laura captured that moment which is so more spectacular than a staged formal shot. 


 

It should tell a story

Some of the issues I have with today’s music (man did I just age myself) is that the art of storytelling seems to have gone completely out the window. Instead they want to bombard us with sound, light and magic.

Forgetting that the magic is in the words that spring your imagination.



Barenaked and proud of it, the guys told us the classic story of a relationship fight. When you both know your wrong but it will take a week to make you say your sorry.



Taylor Swift, who at just 23 reached the pinnacle of her career. Friends, I’m in my 40’s and still trying to find mine. She has her credits for sure, but storytelling? This is one young artist that knows the way to stay at the pinnacle is to reach your audience.



I’ve used him before and recently. But no one told a story like Harry. 

Permission

It is so strange, but I find myself needing permission for me time. I feel like I “need” to be at work, Boo’s therapy, helping Abby with homework and hey being a wife once in a while. I have somehow taken this mantle of having to be there for every moment for everyone else something will go wrong.

Yes, I control that much of the universe. I find when I take time out of the day for something selfish, like a run or meeting friends without the family, I feel incredible guilt.
A couple of years ago I met Tia for a girls weekend. I felt anxious the entire time. Like I was letting David and the girls down by not being there for them.

David doesn’t feel this way. Don’t take that the wrong way, he is a great dad and husband. But if he wants to go hunting, out with the guys, working overtime or take a class he just does. He doesn’t worry about juggling or what it means impact it might have on me. He isn’t being selfish, he always makes sure that I’m okay with him doing whatever. But he just goes.

Last week, for example, he had the day off. The girls are at school and I am at work. He had six hours to do whatever he wanted. He took the dog for a 2 hour walk, visited his mom and whatever else men do get out of cleaning the bathroom. Me? I would be cleaning, shopping, baking, doing anything else other than taking time to just rejuvenate.

Neither of us are wrong in our approach and I know we are no different than any other couple.

A couple of weekends ago we were scheduled to run a race. He ended up taking a class and a friend went with me instead. It was weird, because a year ago I would have just not gone. But I needed it. I needed to check out for a couple of hours. I picked up my friend, we raced and afterwards there was an after party.

Cause after you run 3 miles you should totally drink and eat.

But getting there was a hard decision. It was a we shouldn’t, should we, let’s just go home….wait the restaurant is right there….okay we’ll go in.

It was both of us. Both of us were so anxious that we were not going straight home after daring to take an hour for ourselves. My husband had taken a class that would take him from any family responsibility for 2 weeks. Hers had just left that morning for a business trip where he would be gone at least a week.

Neither man was wrong, but neither man really ever second guessed their choice. Here we were second guessing if we should have lunch!

We sat and talked about just that, how when we were wives we never worried about making sure there was food in the house, the laundry was done or if we were meeting friends after work.

Then we had children, moved our husbands into a role where we are now responsible for their meals, clean laundry and the inability to think for themselves (this never occurred to us as wives). We became self-imposed hermits, needing permission to do something without our families. We have inadvertently moved ourselves into this role where the family cannot survive without us for 2 hours.

We stopped being women and became the all-powerful mom.

Oh no! our minds say, will they eat? Will they be okay? Will the be able to wipe their own asses? (Okay that was my thought, probably not anyone else would think their family was that inept). But I am sure all of us at one time or another thought: How will they survive without our constant presence!!!!

David is more than capable of taking care of himself and whomever he needs to be responsible. Yet when either girl needs something (even a glass of water) my name is called.

But I am getting better. Okay, not better but improving. I raced and had a fabulous lunch with my friend. Last weekend I met a new friend for a much needed run. Tonight I am meeting a friend for dinner. I am leaving David home alone with the girls. Mind you, the poor man has been alone with them all day because of the Holiday. But I am not feeling guilty at all. I am going out for Kerri time.

Okay, I’m feeling a little guilty.