Thursday, July 31, 2014

TBT--Out of the Mouths of Babes

Welcome to Throw Back Thursday, blog style. 

(Originally posted 18-JUL-2012)

Abby is taking some summer help in math at a local school. This morning when I dropped Abby off she was telling me about the kids in her class. Some were from her current class and others she didn't know. Abby said that there was only one other girl, a bunch of boys and one weird boy.

Tuesday, July 29, 2014

I am the Dr. Jeckyll and Mrs. Hyde of Parenting

Unless you are the parent of an only child, most of us will admit to parenting our children differently. You naturally parent a boy-child one way and a girl-child another. You could be the helicopter parent of the first-born (don't touch the stove!) and the seasoned professional of your youngest (touch the stove, that will teach you).

This weekend I realized that I am the Dr. Jekyll and Mrs. Hyde of Parenting. 

Monday, July 28, 2014

My Challenge: K

Today's Challenge is from my friend "K" who prefers to remain anonymous. She is a young woman who one day soon will change the world with her writing, her heart, her well just awesomeness. K was a contributor to the Challenge program at Abby's school. Allowing us to use her essay, The Little Dancer, that had such an impact on the Junior High students. 

"K" has Cerebral Palsy. She is one of the reasons the What's Your Challenge? program at Abby's school was so important to me. I wanted people to stop looking just at a disability and see the person first. I thought for sure I knew what her challenge would be. Of course, per usual, she surprised the heck out of me. 

Thursday, July 24, 2014

TBT--The Perfect Day

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.

(Originally published 24-JUL-2012)

Yesterday I took the day off. Completely off. No work, no housework, nothing but spending the day with Abby. 

First we dropped Boo off at her school. Then....

We went to Dunkin Donuts and discovered the joy of the new Oreo donut. We went shopping. When offered the choice between doing our nails or going to a playground she chose the playground. We went to lunch, her choice where she could make our own pizza.

I was told I was the best mom ever (I am writing it down to remember when she is 16). I was told that we 'have the most fun together' (I am saving this for the college years). 

Then I was told something was missing. I'm biting my tongue to not tell her to be selfish when she says:

The only thing missing was Boo.

So we went to get Boo from school and finished the perfect day.

Wednesday, July 23, 2014

Challenges related to a disability

Last week I was late and well, I'm still technically a week behind the postings. This week's prompt in the Summer Blog Hop Challenge: Talking Raw, Talking Real: Challenges Related to a Disability. 

I kind of wish Boo could write this post. Or Abby. I bet they would say, Challenge? What Challenge?

The truth is, though, loving a child with a disability doesn't mean you do not see their challenges. They are pretty out there. If you see Boo you might say her challenge is communication. Or motor planning (then you didn't see her climb on the counter and remove all knives from the strainer to get her Sophia cup). 

As I am unsure how Boo would perceive her challenge, I will explain how being a parent of a child with a disability presents a unique situation. 

Tuesday, July 22, 2014

I need crowd control

Recently Abby started swim lessons. Yes, I know we are a tad late to getting her skills up. Especially as we are surrounded by water. But well, we've been busy. As I was sitting at her lesson recently I realized that just across the pool was a windowed room that gave you a view of the pool.

The room was filled with stationary bikes. In a moment of AHA I thought why am I sitting here when I could be exercising. No I wasn't hit on the head. 

Monday, July 21, 2014

My Challenge: Jessica

I introduced you to my friend "J" about two years ago. She was Boo's Yogi before life got too crazy to keep up with it. I am happy to officially introduce Jessica, the mother of four beautiful daughters. She practices and teaches Yoga for the Special Child. In her "spare" time she organizes The South Shore Buddy Walk  and Co-Founded a non-profit Heart Beats for Down Syndrome

Her challenge?

Thursday, July 17, 2014


Welcome to Throw Back Thursday, the Blog edition. A walk back in time to before any one read Undiagnosed but Okay. I hope you enjoy the trip!

(Originally posted 12-JUL-2012)

Our friends have a house at the beach. Every year we go and freeload for a couple of days. Abby is always excited to go and so am I. Who doesn't love a beach house? Cocktails, sun, sand, surf and a clean bathroom you don't have to share with strangers.

Boo would rather be in occupational therapy. She hates the beach! The past couple of years have been torture for her. Last year was probably the aha moment where I realized that Boo not only had sensory issues but that they could and would be paralyzing.

This year was much easier for Boo. During low tide, as far from the water as possible. She stood on the hard-pack sand!

All Abby wanted to do was surf. Even crazy puppy got in on the action (Boo was no where near the water, preferring to stay at a safe distance!). As the tide came in, Boo felt that it was safer back at the house, so she stole Allie's board...

But Boo spent the day at the beach and was content to go home and relax with her pup.  We are going back this weekend. We hope to get Boo a little closer to the water!

Wednesday, July 16, 2014

A letter to myself

I'm semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual stick-to-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2's prompt

Tuesday, July 15, 2014

Lessons Learned

I read a fantastic post from Eli at Coach Daddy the other day. So wonderful I decided to steal  ahem, borrow  ahem, use it for inspiration. Lessons he learned from the most valuable source ever: his children. It made me think, as much as I have tried to teach my girls, the lessons I have learned from them are immeasurable.

Monday, July 14, 2014

My Challenge: Eric

I consider myself very lucky today. I have read a lot about autism from the perspective of the parent, the teacher, the doctor, etc...but today I want to introduce you to Eric. A young man who recently graduated high school and entered the work force. 

Friday, July 11, 2014

Who Runs 4 You?

I am now at number 1302 on my quest to find a buddy to run dedicate my runs. If you are looking for a pick-me up for you or your child please consider signing up! There is NEVER a cost to join. You can register at Who I Run 4

Thursday, July 10, 2014

TBT--That Parenting Manual needs updating

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts.  I hope you enjoy the trip back in time.

Originally posted 23-AUG-2013

You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.

Tuesday, July 8, 2014

They don’t go to Harvard wearing diapers

A friend of mine is battling toilet training. She asked my advice and all I could offer her was good luck. There is nothing more difficult as a parent than toilet training a toddler. You can deal with sleepless nights, but eventually a child will sleep. They will either learn that they can cry themselves to sleep or they will learn if they cry long enough they can sleep with you. Either scenario, a child will learn to go to bed. You and/or your child become sleep trained.

You can teach your child to count by rote, learn their letters and dress themselves. But potty training? Exactly how do you explain to a child who has almost no language skills how to work their bladder system?  They can barely feed themselves without issue. How exactly do you let them know what a full bladder feels like? To even describe the sensation, there are no words. It is not something you can model. You cannot play/act it out. You cannot say “watch mommy” because while they see you sitting on the toilet they cannot see the inner workings of how it happens.

It is easier to teach your child algebra than it is to teach them how to use a toilet.

When my oldest daughter was young she was in a Montessori daycare that only went to age 2.9. After that she would need to transition to another school. One that required all children, upon admittance, to be toilet trained. It still amuses me that the Montessori school philosophy of “let the child lead” includes everything but potty training.

About six months prior to “graduation” I began to panic. My daughter showed absolutely no interest in the “potty”. During Spring break I was determined; we would succeed by eliminating diapers and putting on her big girl panties. Here was my brilliant if misguided plan:

Put on panties
Wait for her to tell me she had to go the bathroom
Run like hell to the bathroom

Here is what happened:
                Put on panties
                Walk to the living room
                She peed and said, “WHAT HAPPENED”

All over the hardwood floors, with a dog ready to mark his territory. As I am a slow learner, it took the rest of the day to realize this wasn’t going to work. I tried to reason with a two-year old. “Honey, you know that feeling you get right before you pee all over Mommy’s floor? That means you have to go to the bathroom”.

I tried, in vain, to explain how it works. I tried to make her pay attention to her body. I tried bribery. I gave her an M&M every time she was successful. I ate most of them.

After a few days of complete potty failure I was tired of doing laundry, cleaning the floor and keeping the dog at bay. I lit on what I think of is a brilliant plan. I went and purchased the pull-up. Realizing it was a diaper and she wouldn’t get the feeling of being wet, I put her underwear on UNDER the pull-up. Now when she messed, it was contained but she felt it. I thought this was the perfect solution. Surely now it would only take a few days for her to understand what it ‘felt’ like to need the bathroom. But I was mistaken. It took forever and she really didn’t mind being wet.

Finally a week before she was due to graduate daycare I realized that while no child graduates Harvard in a diaper, my kid might not make it into Montessori Pre-K. I did what any reasonable, mature mother would do.

I lied.

I walked her into her first day of pre-K, with a change of clothes “just in case”. I handed her off to the unsuspecting teacher, waved goodbye and on the way out of the parking lot I thought to myself:

I snuck her into pre-K I wonder if I can sneak her into Harvard?

Monday, July 7, 2014

My Challenge: Kara

This is my friend, Kara. She is the best teacher in the whole wide world according to Abby and her friends. Kara is also the mom to Robbie, the best dressed almost 2 year old I have ever seen. Seriously, he is gorgeous. Except when facing a challenge all parents face.

Friday, July 4, 2014

Happy Fourth of July!

To all the Veteran's who make our country free.

To all the women before who gave me my independence.

To all the therapists who work with Boo to make her strong, stubborn but independent.

I thank you.

Happy Fourth of July!

Thursday, July 3, 2014

Throw Back Thursday--Independence

Welcome to my version of Throw-Back Thursday, blog style. I'm taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

Tuesday, July 1, 2014

Being okay doesn't mean being satisfied

A few months ago I wrote a post titled Paging Dr. House. One of the most fantastic benefits of blogging is when a reader might not comment but instead send you a lifeline. To protect her privacy, "T" wrote to me shortly after that post and encouraged me not to give up. Not to despair. But more than a pat on the shoulder "T" gave me the  name of a doctor who might be willing to review Boo's history. She may have found our Dr. House.

So last week we took a little 20 hour road trip hoping to find an answer to what is Boo.