Author Archives: firebailey

About firebailey

I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.

100 Days

It is well known that I suck at crafts. I’m not being harsh on myself. In fact, there is a woman who can testify that I gave her strangest baby blanket (that was thankfully saved by my mother).

The time I tried to make image number 1 and ended up with image number 2. Continue reading

Along comes a milestone

 

We waited a long time for Bridget to speak. It took years of therapy and patience. I remember the first time she said “Abby”, “hooker” and “I love you”. For ages, we were Bridget’s translator to the world around her.  We knew what she was saying, the world around her usually looked at her like she was speaking a foreign language.

Over time, Bridget’s articulation became more pronounced. Suddenly, the girl without words was shouting, “Miss Tisha Look At ME!”.  Continue reading

PACS1 Awareness Day

I love being a member of the PACS1 family. Our small group has grown from 14 families to over 40. Our most recent adoptee asked a reasonable question: “all these young children…I am wondering why it took so long to diagnose X”.  This mother has searched for over 13 years for an answer to what made her son unique.

Why does it take so long? Continue reading

The games we play

All parents wonder when their child will accomplish a goal.  Parents whose child has a disability play a vicious game with themselves. The game is called, “Will my child ever….”

Will my child ever roll over?
Will my child ever stand up?
Will my child ever say my name?
Will my child ever speak?
Will my child ever walk?
Will my child ever say she loves me? Continue reading

Milestone, check.

When Bridget entered the public school system at age 3 we knew her experience would be different from her sisters. Her sister went to a private daycare and then private kindergarten. Bridget needed more. Her sister transitioned to the public school in first grade and eagerly ran onto the school bus. So quickly did she run onto the bus, that we do have a first day on the bus picture.

We knew that Bridget would never take the bus. Continue reading

Forget style, we are working on independence

It is easier, some days, to do things for Bridget rather than have her do it on her own. I know she needs to be independent. I understand that she should be able to put on her own clothes. I also concede that I need to get out of the house on time and it’s not worth the effort/tantrum/time to teach her how to dress herself.  I know I am undermining her success.

Continue reading

This is Public Education

Dear US Congress and House of Representatives,

I am writing to you as a concerned parent of two children who currently benefit from public education.  I am very concerned with the vacancy of Education Secretary and the nominee who is seeking to fulfill the post.

I am sure Ms. DeVos is a wonderful woman. I do not believe she is qualified to make important decisions on the public school system. There are positions that you do not need experience in order to succeed, education is not one of those positions. It is imperative that the Education Secretary have a background in education. Although your child may not attend public school, I do not believe you would send them to be educated by a person who has no experience in shaping young minds.  Continue reading

Third time’s the charm, I hope

I do not consider myself an athlete. I have never pushed Bridget’s older sister to compete, join a team or do anything but follow her passion. I do wish her passion wasn’t horses or adopting every stray animal, but I have been perfectly happy not having to sit on the sidelines at some cold and rainy soccer field.

It is easy, with Bridget, not to worry about typical events in children’s lives.  We have been so busy trying to make Bridget verbal and a member of society, we can forget to expose her to normal, run-of-the-mill life experiences.  Recently her SPED teacher told me that she thinks that parents with children who have disabilities forget to do the normal childhood fun, like sledding or skiing or just playing outside.  I tried to explain that, for me, having faced failure before it makes me less likely to try again.  It is definitely easier to just let her watch her I-Pad then to continue to expose her to experiences that are going to make her cry.  Last year we tried basketball, epic fail. We tried soccer and watched our little girl happier sitting on sidelines than kicking the ball.

Yet, I do not want Bridget to sit on the sidelines of life.  My entire goal with Bridget is to make her a functional member of society. I want her playing with other children, not lost in the world of videos.  Lucky for me our town recreation department is making a concerted effort to work with Special Olympics. For the winter they offered bowling.  We talked it over and felt, well she won’t get knocked over by her teammates, let’s give it a try.

She loved it.  I mean loved it more than Fig Newtons kind of love.  She might win the World Record for slowest bowling ball down an alley, but she had so much fun!

The next day she walked into her first grade class and actually shared what happened during circle time. “I go bowling with J”. Her teacher told me that Bridget’s excitement was beyond measure. Bridget articulated her story and added to the classroom activity.  Bonus, she retained what happened and will tell anyone she comes into contact with how she went bowling.

This is something we can do as a family. Bowling is not only accessible it does not need to be adapted for Bridget to access it. Except the gutter guards, but even I would benefit from that help.

I always want to have Bridget access “typical” experiences.  Special Olympics has taught me that by exposing her to adaptive experiences first she will have much more success.

 

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I am incredibly thankful to the Sandwich Recreation Department, their partnership with Massachusetts Special Olympics and for the generosity of Ryan Family Amusements for donating the lane time to let “special” families feel typical for a few hours on a Saturday.