Monthly Archives: April 2014

The Challenge Wall

A few weeks ago I wrote about a new program at Abby’s school that celebrated Special Needs Awareness Month. I had to take down the children’s challenges as the program had ended (I did save a few) but thought you might like to see how incredible this project turned out.

We incorporated celebrities who are outspoken about their difficulties and placed the students (and others) challenges above, below, next and over them.

Each week the poster of the celebrity changed, but the children’s never did. To show that you might always have a disability, but you will always be you.

Then the kindergarten teachers took our idea and blew us away, having the students draw their challenges.

I am overwhelmed by how honest and forthcoming the students were. There were so many honest conversations at home, at school and on the playground.

This video was shown on World Down Syndrome Day. The one response from the kids? They wished it showed all disabilities not just Down Syndrome. But they understood the message: your friend is your friend. It’s as simple as that.

I would like to thank Abby’s school for taking on this month long program and simply rocking it. The Challenge will be back next year and in more schools. I cannot wait to see how the kids evolve.

Spring break

Remember when Spring Break was bikini’s, beach, drinks, sun and fun? Yeah, me neither. Going to college in your 30’s makes Spring Break very different than when you are barely 21. 

It’s even more surreal when you are old, gray and traveling with children.

The upside is there is no hangover, no worry that there will be a picture of you dancing on the bar and no fear that you woke up next to a serial killer.

Instead you wake up with a child drooling down your neck while your husband hangs on to his 1/4″ of the bed the other child is trying to knock him off of.

Another upside is you stay in your parent’s spare room so you save a boatload of money. They house you, feed you, supply you with the alcohol they once banned and bonus watch your children!

They also take you for pedicures

Let you make wine:

You can cheer your older sister on while she crashes your father into strangers:

You prove you are never too old to hunt for Easter Eggs

You have some Tea with Grandma

You ride some horses

You take your first selfie on the big girl swings

You dance on stage

Then you settle in for the long ride home

Like I said, it is very different than Spring Break is very different than how it used to be. But it sure was fun!

Without support….

Without support I would be lost. Today, while I have so much to be thankful for, I am going to focus on the one thing most important.

Today I am thankful for the friendships that have become the rock by which I stand firm.

I am thankful for the friend who meets me at 6am for a trail run, even though it means she does a brisk walk while I try to run to keep up.

I am thankful for the friend who invites me for Chinese but understands the Bruins are on.

I am thankful for the friend who is my mom, the one that lets me show up for Easter Mass because she gets that is how organized I am.

I am thankful for the friends who read my Looking for Dr. House post and not only send me encouragement but names of physicians and others who might help settle my fears.

I am thankful for the friend that is my daughter, who while she will forgive me for not packing her socks she will never forget. Nor will she stop reminding me about the time I forgot to pack her underwear.

I am thankful for the friend who is on vacation but still reads an e-mail from me (that said not to open until she returned) and quickly responded.

I am thankful for all the friends that have supported our Bridget’s Brigade.

I am thankful for the friend who lets me send her a potential blog post and gives me her honest opinion about it.

I am thankful for the friend who made Abby’s day this week by giving her a play date with a known friend and a new one. 

I am thankful for the friend who let me guilt her into participating in Mudderella. If you are looking for something to do on Sept 6th and are in the area join our team: We Mud be Crazy.

I am thankful for the friend who understands that it is impossible not to sign along with Sophia the First. And thinks it’s weird that the mom calls the King: Rollie. 

I am thankful for the friend that understands I will mess up every tweet (twit?), blog hop and sentence prompt but lets me play anyway.

So thank you, all of you, for giving me what I need to get through this thing we call life.

Ten Things of Thankful

Decisions not made

The best decision I ever made was one I never would have, if given the choice. People make choices all the time. Those decisions have unknown consequences and unknown victories.
Had I been told while pregnant that Boo would be admitted to the NICU on her fourth day of life, that we would be told her brain was not developed and she would never walk, talk, jump, love or progress. That five years later she would still be proving to be a medical enigma, I may have made a difficult decision. I would have thought I was making the best choice for myself and my family.

I would have been wrong. So wrong. 

Doctors don’t know everything, testing is not always 100% accurate. The doctors for boo were well-intentioned, but they were wrong. Yes, Boo hasn’t had a tranquil childhood. I have had fears that she wouldn’t survive. Fears that she would never have a life like Abby’s. I worried, lost sleep, became a master at using Google to find remedies, treatments and novel ideas. I became a warrior mom, an activist an optimist.

I broke and continue to break.

Every time I break I think of that Fellow who didn’t believe in her. That did not understand the absolute power of a warrior parent. I remember that moment and am thankful for those broken moments as they make me appreciate how unbroken Boo really is. Being unbroken means there are a lot of decisions to make.

The decision to bring her home from the hospital and not let them define her.

The decision to send her to a daycare that loved her, that transitioned to a school that adores and supports her.

The decision to allow surgery (or not).

The decision to provide intensive therapies when we were told they were too much for her.

The decision to let Boo defy expectations, not once or twice.

There are a lot of decisions I make with Boo. Some large, some small, but all must be thought out, researched and agonized over. Yet there is one decision I never had to make and am so thankful the choice wasn’t offered.

I realize that best decision I ever made was one I didn’t have to make. 

Finish the Sentence Friday

A few words of advice….

When your child is born you are overcome with a lot of emotions. Then you get home and realize that you misplaced that instruction manual handed out to all new mothers.  Never fear, help is here!

Truth is, that “what to expect” is a bunch of bull crap. Here for you is the the real story of what to expect.
1. Don’t try to get the gum/lollipop/sticky thing out of your child’s hair. The more you try to remove it the more intwined it will become. Instead, cut around it and tell the preschool teacher that your sweet little thing got a hold of some safety scissors. 

2. You will never sleep again. Just when you get the baby to sleep through the night you will realize that you were the one in training. You will learn to rest like a combat soldier. Deep sleep one minute, the next wide awake realizing that your child is asleep. Around age 8 you will begin to sleep more soundly. Then they become teenagers and you start all over again. Remember those naps your mom told you to take? This is her revenge.

3. Speaking of grandparents. Sure they seem all benign and loving. That’s how they trick you. When they were your parents you had to make your bed, eat your veggies and clean your room. As grandparents they will take your child, give them sugar and toys that make noise. Then they send them home. Thus ensuring #2 

4. Your child will eventually be potty trained. Honestly, no child graduates high school with a diaper unless there is a medical need. Give yourself a break. You are doing fine. It is easier to train your husband to put the seat down then to explain bowel functions to a toddler.

5. Kids come with homework. Not the homework you might recall. But math homework you will have to Google to figure out how to answer the math problem they way they are supposed to. 

6. You will know, by heart, the words to every song on the Disney channel or movie. You will not know one person up for a Grammy, an Oscar or a Tony.

7. Phrases you never expected will come out of your mouth. For example, no you cannot tickle my butt or let me shut the windows so I can scream at you without the neighbors calling the cops.

8. Pre-child you thought multitasking was taking a call at work, while answering an e-mail and texting your girlfriends. You will soon learn the true art of multitasking: Going to the bathroom in a public restroom while holding your foot on the door so one child cannot escape while the other sits on your lap.

9. Your child will embarrass you. Seriously embarrass you. They will say inappropriate things (in and out of public), they will dress funny and they will one day tell the teacher: My mom had popcorn for dinner last night but made me eat all of my baked beans.

And the last gem, courtesy of Abby….

10. Babies are not fun. But 10 year-olds are so hang in there.

Paging Dr. House!

Recently I took Boo for a follow-up with neurology. The best part of the visit was when Boo hit the ALARM button in the hospital elevator. In a crowded hospital elevator. The day would have to get better, yes? We were only going for a routine follow-up.

Maybe with other children. But nothing with Boo is as easy as it appears.

I adore her neurologist. I trust her more than any other physician Boo sees. We had a long talk about the autism diagnosis and what it means for Boo. She asked about Boo’s chronic low blood pressure and is surprised that no one is too concerned about it. She asked about Boo’s chronic color changes and again showed surprise that no one is too concerned. That although her Raynaud’s is manageable it is odd that it presents so young and without any rhyme or reason.

I told her about Boo’s newest development: intermittent swelling. That her wrists and hands would swell for no reason. I had taken her to the general pediatrician but by the time I had made it his office she was no longer swelling. As the neuro examined Boo she agreed that one of her hands appeared swollen and asked about her legs. Um…she is always in jeans and sneakers. Honestly (my bad) I never checked. I did say that her legs do get “tight” but we have been stretching them.

Disrobing Boo her neuro said: She isn’t tight she is swollen. Very swollen. But it doesn’t seem to bother her. (That should be Boo’s theme song)

So a parent would think okay what do we do about this?

Her response: call some one else. Okay, not really. But she told me to follow-up with two of Boo’s other specialists. That this wasn’t really her field.

Deep breath. I called Boo’s rheumatologist and was told it (based on a phone conversation) that this swelling does not appear to be rheumatological (is that a word? If not I just made it up like undiagnosed) in nature to “give it a couple of weeks” and then go back to our general pediatrician.

I called Boo’s cardiologist and left a message. No return call yet, they must not think it is anything to be concerned about.

But I am. And I am frustrated. How can one little girl have so many abnormalities. Isn’t one enough? Does she really need 15? I’m thinking she is getting greedy. 

So here is what I am looking for Dr. House. I am looking for someone with a medical degree to give a crap. I want them to look over Boo’s entire history. I want her examined from head to toe and not say they don’t know. We are okay with being undiagnosed. We are not okay with no one exploring why.

Acceptance begins with me

March Madness, forget College Basketball. Dudes the Bruins were on! In all seriousness the month of March was incredible for me. And a bit ‘mad’ as in crazy busy but for something important.

I joined a fantastic group of people at Abby’s school and created Special Needs Awareness Month.
The program happened because of Abby. We were at a therapy appointment of Boo’s and she saw a classmate. She told me that she never realized XX was special needs. She wish she had known because she would have helped him more. I was shocked. How could this child who lives with a special needs sibling not see the uniqueness of a classmate?

Thus an initiative was born. Working with teachers, parents and administrators at Abby’s school we created a month-long, school-wide event. It was a simple concept:

What’s your challenge?

Each week we had conversation starters, activities, videos and books for the classrooms to use. Every class, kindergarten to grade 8, participated. Every discipline, gym to library to music to art added to the program.

Week One focused on the children’s definition of challenge: something that is hard for you to do without help. We had pictures of celebrities with disabilities (the girls swooned over Justin Timberlake–ADD and Orlando Bloom–dyslexia). 

So what is it? What is something hard for you to do? 

The response was heartwarming to heartbreaking: It’s hard for me to catch frogs to I spend a lot of time in the hospital.

Each week the program grew. And you know what? It worked. The school nurse during W3/Down Syndrome week ended up sharing a story about her favorite cousin. With the entire school. Children went home and talked to their parents about empathy and those with special needs. They saw the video Just Like You and understood that friendships are built on love not need.

We had each student write down their challenge and hung them in school entrance. A teacher walked by, read a few and said, “These are all my challenges”. We all have trouble making friends, speaking in public, doing math homework. Some of our challenges are more difficult: being in the hospital, having asthma when you want to run, losing a parent, having dyslexia.

A young boy expressed that he wasn’t afraid to say he had ADD. Today. I pray for his tomorrow.

My friend, Kristi, recently asked how to create a world of empathy and understanding. A world where we wouldn’t have to worry about her beautiful son or my Boo being bullied because they are not typical. 

It starts with you. And me. And our children. Integration means that your typical child will become friends with Boo or Tucker or Kayla or Little Dude. They become friends with children who are not typical but have something extra. Children’s ideals are formed at such a young age. They see friends where parents see ability.  

Like the video says, understanding leads to acceptance. By having open dialogue with students and their challenges our school tried to create a small epicenter of tolerance, acceptance and peace.

How about you? What’s your challenge? 

I urge each and every one of you to begin seeing the ability in a child and not the disability. If anyone would like to implement this in your school please e-mail me at and I will send you our program.

I will miss you

DJ Jen, for personal reasons, is putting the Mix Tape on indefinite hiatus. I am trying to believe it is not because I have this thing of messing with her mix-tapes.

But I am seriously going to miss the mix-tapes. I never thought I was a DJ but going back down memory lane was fun. That is what I am going to focus on this week. Missing the days gone by….

And remembering those that went before we were ready to let them leave. Cause Jen you are a legend, if only in my own mind.

Last but never least, my Jimmy….

Jen we will be friends for as long as you take my e-mails and Facebook posts. Thank you for always letting me play even when I completely messed up the mix tape. One of these days we will meet for that Margarita and enjoy that Last Mango.

My Skewed View

Parent Teacher Conferences According To Abby

We recently had Abby’s Parent-Teacher conference. Before leaving I asked her if there was anything I needed to know. What did she think her teacher would report?

She asked why SHE wasn’t allowed to do a report on her teacher.

Um….okay, well if you were going to give me a report on your teacher what would you say?

Abby: Oh, he is doing awesome and should keep up his hard work.

Phew, I thought. Back to my question: Do I need to be prepared for whatever he is going to say about you?

Abby: Let’s hope not, I don’t want to lose riding.

The decision

It wasn’t easy….I am sure we will rethink this decision over and over again. We had no choice, really. We thought that we would decide in May if Boo would transition to Kindergarten. But the deadline was mid-March.

Boo has been in this integrated preschool since she was three years old. We love her teachers. And when I say love I do not mean the way you love chocolate but the way you love your God. They have been patient, kind, loving and words cannot explain the feelings we have for them. They have guided us, provided ideas and shown up when we needed them. 

I was afraid to leave them for kindergarten. Their security. Their understanding of Boo. Their acceptance of my limitations. They understand that Abby does Boo’s homework. They get that I cannot handle field trips. Or that work interferes with Nursery Rhyme day.

That her dad will show up in his hunting regalia.

Kindergarten? That is a huge step for us. We want Boo to transition with her peers. This is the first year she has been invited to birthday parties. She has always been accepted, don’t misunderstand, by her peers. But this was the first year she was came home telling me she played with someone other than her therapist.

I want her to go forward. To transition. To be normal. Freaking normal going to kindergarten on schedule. To have gym and art and library. To have lunch in cafeteria. To be with her age-peers.

But she isn’t ready. I know it. I swear I know it. But…

She is being left behind. Again. Only two classmate of hers will be there in the fall. And, no offense, they are boys. They are not little girls who understand the importance of Princess Sophia. We will have to begin again with the parents who know Boo. Who do not get that she is petite and 2 years older than their child.

There are only upsides to Boo being left behind. She will have more time to learn her colors, numbers and letters. She know the routine and is comfortable. Her teachers encourage her growth in all areas. It is more just me realizing that, once again, Boo isn’t ready to move forward. 

I spoke with her pre-K teacher who told me that Boo will be with her until she retires.

I’m kind of okay with that. Because who wouldn’t want their child to be with the teacher who loves and nurtures them?