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. 

 

The Year was 2016

This year was a year of tremendous change and (quite honestly) courage. I haven’t been able to blog as much as I used to, barely managing this chaos I call life has impacted my creativity.   In January of 2016, I only wrote once due to school committee commitments. Throughout 2016 I blogged sporadically, and I am thankful to all those who have continued to read, to share and to be a part of my village.

I have continued to blog about the important things in life. Learning to fly and learning to let go. If we were having a glass of wine…..

If we were sharing a glass of wine in January, I would ask why the hell we signed up to run a mile every day in January.

If we were sharing a glass of wine in February, I would thank you for teaching me how to fly out of my comfort zone and into the air. I would still laugh over that stupid science project that “Abby” did (yeah, right) and David’s reaction to it.  We still have that stupid simple machine in our basement. I’m not sure if it is for prosperity or for the ultimate bonfire when the Elf is in residence.

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If we were sharing a glass of wine in March, I would remember fondly that day I blinked and my girl child sat in the front seat and changed the radio channel.  I would thank you for standing steadfastly with me against the R-word. We would agree that changing jobs was actually scarier than facing one of Bridget’s maladies but worth it in every way.

 

If we were sharing a glass of wine in April, I would tell you I have forgiven you for breaking up with me. I am also glad we still have pancakes.

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If we were sharing a glass of wine in May, I would tell you how thankful I was for Facebook reconnecting me with PACS1 families and long-lost cousins. I would cry with you over my failed attempt to have Bridget be the next Mia Hamm and you would make me laugh when you reminded me that living with Bridget was like living with groundhog day. Just when you think she has conquered the beach…you take her to the beach forgetting about the wind.

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If we were sharing a glass of wine in June, I would thank you for going on a blind date with me. Meeting a PACS1 family in the flesh was beyond awesome and solidified the Facebook bond. I would tell you about our trip to Great Wolf Lodge and how the little things, like my child being able to enjoy a story means more than I can ever explain.

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If we were sharing a glass of wine in July, I would remind you that for every action there is a reaction. For every time you feel you mean nothing in this world there is a ripple across the pond to someone who can change your life (in a good way).

If we were sharing a glass of wine in August, I would tell you that August is my favorite month. My camping family month where Bridget is accepted for who she is and Abby is the girl she would be if Bridget wasn’t her sister (sad but true) and allowed to be a child just enjoying the moment. I would thank you for including us, for being our fire family and for just being awesome.

If we were sharing a glass of wine in September, I would tell you how afraid I was of first grade and junior high school. That I unwillingly became a helicopter parent to the older child and placed my faith the younger child’s teacher that she would fulfill her promise of inclusion. I would tell you that it is okay to lose it and scream out loud because sometimes life isn’t fair and it just sucks.

If we were sharing a glass of wine in October, I would share (without shame) what a meltdown looks like and acknowledge that Bridget’s meltdown is so mild compared to most children who have special needs. I would tell you that October simply sucked and if it wasn’t for you I probably would not have survived it with my sense of humor intact.

If we were sharing a glass of wine in November, I would remind you that I secured best wife EVER status. I would tell you not to ask a friend in need what she needs, but be THERE in the moment and do what you can do. I would remind you that we did not end up where we planned, but in all honesty no one really does. Think about it, how many people are using the college degrees in their current career?

If we were sharing a glass of wine at the end of December, I would tell you it has been a heck of a year. I would thank you for being there every step of the way, easing my burden and allowing me (I hope) to ease yours.

I hope that we raise a glass and sip together in 2017. Thank you for being an integral part of my life.

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I’m okay with imperfect holidays

I used to be the Clark Griswold of Christmas. I decorated every room in the house. I put ribbons, bows and labels on gifts. One year each member of the family had their own individual wrapping paper. I was the hostess with the mostess, a caterer could not put on a better meal.  I knew exactly what I was getting everyone and planned out the holiday season to the moment. Each gift was chosen with thought and care. There was a time when I would shop throughout the year and remember where I put the gifts. Continue reading

When First Grade is more

I understand it has only been half a year. However I want to go on record (and brag) that the combination of Bridget’s special education teacher and (epic) first grade teacher is more than I could ever had hoped. The first grade teacher not only understands inclusion, she “gets” that Bridget isn’t the class pet there to give hugs but to be a part of her classroom. Though Bridget’s hugs are a hot commodity. Continue reading