Dear Teacher (ESP/Therapist),
This is not about how much we know you care about our children. We know you struggle with them (some days) and you never give up on them. It’s about the process in reporting their progress that hurts. It also doesn’t make sense.
How can a standard report card accurately state how my child (or any child with an intellectual disability) is doing in 4th grade? Continue reading
When your child is diagnosed with a rare syndrome, you are at first overjoyed: YAY! We know what “this” is! Then you are back to being overwhelmed: What do they mean they don’t know what “this” is! A parent who spent years searching continues on, looking for answers, looking for a cure and (most desperately) looking for someone who has been there before who can give you a road map.
I spent the first five years of Bridget’s life without a road map. Not one doctor could tell me anything other than, we know something is wrong but we don’t know what it she has. Years of seeing doctors and specialists who would tell us that we are doing everything possible to make Bridget the best she could be, and to keep up the good work.
Then we were diagnosed with PACS1.
Journey over, right? Um how about it was just beginning. Continue reading
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.
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
Bridget has a fantastic program at her school. While it is not as inclusive as I would like, I will not deny how far she has come this year. Her language? It has exploded to where the need to translate for her. She can now jump. She can now escape the house. She can also steal a half-moon cookie and eat it for breakfast.
We had a very successful trip to Bridget’s neurologist. And not just because we survived it without Bridget setting off any alarms.
She just looks innocent
I have to confess, of all of Bridget’s doctors her neurologist is my favorite. We’ve had her since she was a fellow (no, not a Jenner) and saw her through getting her MD. We’ve seen her choosing her specialty and having her first child. Continue reading
This is not a good look for Bridget.
Until you realize that it is a phenomenal look for Bridget. Continue reading
I recently received an e-mail from a mom who is just beginning her special needs journey. She googled a few terms and this blog showed up in her search (wow!). As I read her e-mail I was suddenly taken back to that place. The place where I was completely overwhelmed and wanted Dr. Google to explain what was wrong with my child.
I remember looking into this face and feeling so overwhelmed and ill-prepared to deal with a child who had health issues. Not knowing in that moment that this would actually be the easy time. A time when we were cocooned with doctors and nurses just a call bell away. Continue reading
There are 62 Million girls around the world who are not in school. Think of that for a moment. In this country we take education as a right, something a lot of us take for granted. We believe that all should have access to preschool through high school. There are many of us who believe college should be included in that matrix. Yet world-wide there are 62 million girls who have no access to education. They are illiterate, uneducated and financially dependent on others. Education is a known factor in advancement yet is denied to young woman around the world. Sometimes through circumstance, most often by men who fear the change women challenge the world to undertake.
A girl without access to reading, writing and arithmetic is more likely to end up in an abusive relationship, motherhood before she is emotionally ready and in poverty. Want to stop terrorism? Educate the poor, the disenfranchised and the children of the world. Let them understand that the world is more what they see out their window. Malala proved that one girl’s education can give voice to a movement of change. Once their minds are awoken, young women’s voices cannot be silenced. They become mothers who will impart the importance of education to their offspring.
With access to education, young women across the globe will affect change. This is not just women in underdeveloped countries, but here at home. According to PEW Research only 63% of US high school women go on to secondary education. Some of the 37% decide not to go further because they go into trade, the military or for whatever reason decide not to go to college. I am willing to bet that out of the 37% of high school girls do not go to college due to circumstance. Looking at colleges is not a financial undertaking most of us can afford nor have the credit rating to achieve. If your parent did not go to college, you are less likely to see the value a college education can be to your life. Children of lower-income single-mothers are less likely to have the opportunities for higher education. A recent study showed that 100% of former welfare recipients that receive a four-year degree and 82% of welfare recipients who received a 2-year degree stopped relying on welfare support.
In 2013 our country had 10.9 million school age children living in poverty. Unsurprisingly, 40% of US children living in poverty are unprepared for school. A staggering 31% of US children without a high school diploma will continue to live in poverty. Compared to just 20 years ago, the rate of children living in poverty has increased and the gap of income inequality continues to grow. Their children will repeat the cycle, unless change is made and education becomes a priority.
Education breeds personal power. If we want to see more women CEOs, leaders and Heads of State we need to educate them. Not in our own backyard, but in every back yard. I do not want women to overtake men; I want women to work alongside them. Equal partners effecting real change to leave this world a better place then we found it. Advances in science, economies, living conditions and education benefit all of society. We need to stand with the United Nation’s stance that education is a human right and a “driving force of human development”.
When our youth are educated homicides are decreased, crime is lessened, reduces infant mortality and teenage pregnancy. Famine and world hunger can be alleviated. Terrorism loses its footing when those being suppressed are educated on how to make their voices resonate across the lands.
The US Peace Corps is collaborating with USAID and the First Lady to work together in educating girls, one girl at a time, through grassroots efforts. Volunteers committed to teaching all children. They understand that with education comes change, and maybe peace. It’s time to get the facts and be clear: education should be a fundamental right of every child. To learn more about the initiative Let Girls Learn please visit their website at: https://www.whitehouse.gov/letgirlslearn
**Warning Rant Ahead****
Bridget started in a Montessori daycare within her first few months of life. Before we knew that our fragile daughter would soon become a ‘special’ child.
Transitioning at age three to an integrated preschool was difficult. She was nurtured at Montessori, they accepted her for where she was at her developmental age and they encouraged her growth. There were no labels, there were no educational plans or processes. She was just Bridget. I was so nervous the first day of preschool. I felt like I was leaving my baby, the one who had so many struggles, in a cold classroom. I wasn’t ready. She was, thankfully, more than ready to spread her wings. Continue reading
(Un)Diagnosed and still okay 