Category Archives: Special education

Forget the ABC’s

Bridget has been trying to learn her letters for about 3 years. We have struggled with her learning the letters in her name. We jumped with joy when she started saying: B, Bridget. We thought YES!! She is learning her letters.

We were wrong. She only knew the “B” and no matter how we tried we were not successful in her learning her letters. Continue reading

This is SPECIAL education

In September I was terrified of Bridget entering kindergarten and transitioning from the Spinnaker program to a new self-contained special education classroom. Even though I knew the special education teacher for years, leaving the sanctuary of Spinnaker was heart wrenching.

I knew I was over-reacting and worrying for nothing. However loud the brain is shouting, the heart beat of panic is louder. Six months later I am happy to report that not only are we surviving kindergarten, Bridget is thriving.  Continue reading

You have a diagnosis. Now what?

In February 2015 there were 19 confirmed cases of people who have PACS1 Syndrome. As more children have Exome sequencing, we have grown to 32 (known) families. In a year. Thanks to this blog, I am sometimes the first point of contact for the newly diagnosed. It is a role I cherish yet at times feel sad that I cannot provide the answers they may be looking for.

Welcome to the PACS1 family! Now what? Continue reading

When children are denied an education

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

I already hate Kindergarten

**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.

176Transitioning 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

Autism cannot be cured

I believe in autism. I believe that so many families battle autism like warriors. I believe autism can be masked and I believe that autism can be hidden.

I do not think autism can be cured and question that it should be. Continue reading

TBT–CARE

Throw-back Thursday, today to not quite end Down Syndrome Awareness Month I am reposting a blog from October 31, 2013. It is beyond important to raise awareness for what Down Syndrome is and what it is not. This post explains why it is so important to any parent whose child has a special need.

Continue reading

My Challenge: Mardra


I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge. 

My Challenge: I am afraid of monsters.

As long as I can remember, I have known that a monster is not the lifelike replication of a furry puppet. I’ve also never really been afraid of Frankenstein or Dracula style monsters, fantasies that were created to emulate the human condition, but in and of themselves began as a figment of a writer’s imagination. 

No, as a young girl and still today my fear of monsters is much more palpable, cynical and real.The opportunity to see and read stories of the monsters that walk among us are everywhere and every day. 

The news is filled with them.  One example that recently crushed me involved high school boys acting monstrously towards two of their innocent and more vulnerable peers. My stomach turns now and hollows; my heart pains as it beats living with the long minutes of rape, exploitation, jeering and confusion. I type through the tears for the parents of the victims, the anger they must feel, the shame, the fear…

I scold myself. I shouldn’t have read the article. The headline told me all I didn’t want to hear or believe. 

What am I supposed to do with these images, at once swimming among and drowning my own thoughts? This being one of the many examples of monsters that look like normal human beings, living among us. And they are everywhere. Both in power and searching for power. On the streets and online. In my imagination and in real life. They have always been and always will be.

For the first 21 years of my son’s life, we lived in our own shell. I went to work and home and kept a close circle of friends. Marcus went to a private school where I felt he was most safe while learning and growing. From the first days of his life I feared that his facial features would make him easily preyed upon; I felt compelled to focus on preventing the possibility of any ill-intentioned creatures causing him harm.

The word overprotective has been lobbed in my direction and that too carries its own weight of parental guilt and consequences.

Less than two years ago I decided to put in a window to our closed off life. I finally embraced the 21st century and Marcus and I claimed our own little corner of the World Wide Web. We launched Grown Ups and Downs, with much thought, trepidation, and coffee.

So far, we are a very small clan and don’t attract much attention from monsters. But I know they are there. And, that is part of why we are there, too.  A song I often refer to for courage is “Hands” by Jewel: For light does the darkness most fear.



I don’t have a great arsenal of defenses against potential monsters. I don’t have a superhero shield or a sword of steel. All I have are two things: language and love. Marcus inspires me every day by sharing his stories and his humor. He gives me his love unconditionally and he accepts me when I am curled up and hiding under the blankets. He reminds me when I rant that, “No one is perfect, Mom.”

Monsters feed themselves lies and vomit it upon others. Monsters are even afraid of other monsters, which is why they huddle in packs, and commonly use whatever means available to dull their human senses.

The days when fear pulls on my shirttail and coaxes me to hide, Marcus shows me how his light can shine and warm others who may also be afraid. He tells me dreams the monsters could not believe, and we climb towards those dreams.

I know the monsters’ presence will grow with us and there are days they strike. There will continue to be days the when monsters touch both those I do and do not know and leave me bruised and shaken in their wake as well.

I do not foresee a day when I won’t be afraid of monsters. And monsters, true monsters, will not be changed.

But others, those who are looking for kindness, reasons for optimism and good news. Those who are looking to learn and have opened their minds to a spectrum of human possibility, it is for them that Marcus’ light shines the truths of love and life’s potential. His enthusiasm and ambitions take a little bit of power and energy from the darkness monsters feed upon: ignorance, fear, and misunderstanding. It is with Marcus by my side that we aim to show from our little corner of the world a life of innocence, of ambitions, of love, and try to shine brighter yet these things into the world. These are the only weapons we have and we wield them with hope.
In the end, only kindness matters…
 

Marcus and his mom Mardra

***************** 

When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.


With Boo the fears are different. Boo cannot tell me what happened. For example last week she fell and scuffed her knee. She told me her therapist at school “pushed slide”. I knew that probably didn’t happen. When I asked her therapist the next morning, I said Boo said you pushed her off the slide. David was there and said no, I was walking her to the car and she tripped! We all had a chuckle over it. Boo bruises easily, she is always getting a bump or scratch. Recently she had one on her back. It turns out Abby dropped her. No biggie, but reading Mardra’s challenge reminds me that some day it might be. That Boo needs the language because one day it could be her that some high school bully pranks with a bucket of feces. Or worse. If you have time, check out Mardra’s article on the Huffington Post. It’s not just the monsters out there, it’s the people who say our children need to be hidden. 

You can find Mardra and Marcus on the Grown Ups and Downs Blog, Facebook & Twitter.

What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at firebailey@gmail.com

Sometimes

**Warning Rant Ahead**


Some times….I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.

But I accept that. 

I will not effing accept is that I HATE in capital and bold letters that doctors will never show concern for Bridget. That she has to have some mysterious swelling that one doctor tells me to call another doctor about who tells me to call yet another specialist about. That when I finally get her into the vascular clinic she is seen by one doctor and fourteen medical students/fellows and I am told that her vasomotor instability is not that big of a deal. “A LOT” of kids have something “like” this phenomenon and not to worry. When asked if I should be worried that it could be happening while she sleeps and is it fatal, I was told no. I told them they would be the first person I called should they be wrong.

No parent (and I am not looking for a poor Kerri thing here) should be told that. That without any testing, with a brief exam that their child is fine. Parents should not be made to feel like we are bothering doctors. 

We are the reason they can afford their student loans, vacation homes and alimony bills. 


Bridget has SIXTEEN different specialists. Why the freaking hell do I have to call them? They are all at the same flipping hospital. Can they not call one another and chat, is that too much to ask?

And why, dear God why, do they refer to one another and then disagree? Why must I always be the advocate, the voice of reason and the fingers of Google. Why do I have to always be vigilant? The one who e-mails and calls cardiology, genetics, rhuematology, neurology, GI, neuro-urology (yes, there is such a thing), pulmonology? Why do they think that because it is NOT life threatening it doesn’t impact her life?

Not that she “suffers”. There are children with disease, cancer and deformities that have a life so much more difficult. I completely get how lucky we are and how selfish I am for getting pissy that she has to endure things that really are not that bad in the scheme of things.  Recently she got another quirk, not an ailment or symptom really. But just one more thing to add to her Booness. I said she already had 15 why add one more. 

This was not the life I expected.

To constantly be second-guessing myself. And the Harvard Graduates.

To wonder if I push too hard or not enough.

To cry because children are supposed to be beings of joy before they are teenagers.

To be at my wits end because although I love Bridget for who she is I hate the fact that I don’t know why she is the way she is. That we need to know the why so we can give her the best life she deserves to live. Just like her sister.

To have to physically hold my child down for two hours while she screams during a test of her bladder function. 

Because as much as I love my child sometimes I resent that she isn’t perfect.  That she isn’t easy. That she, with all her advances, cannot keep up with where life has placed us.

Because I am not capable of being the perfect mom that can handle everything.

Because sometimes I cannot even handle my beautiful, awesome, perfect daughter.


And I am sorry. Because sometimes I effing resent it. I fucking hate that this is our life. A life where we know our beautiful daughter will always struggle. That our lives are scheduled around school, therapies, doctors appointments and not play dates, gymnastics and ballet. 

We will struggle with Boo. For freaking ever. This will not end. That although our children are always our children Bridget will forever be our child and not the mother of our grandchildren.

That I look into Boo’s eyes and see how beautiful she is yet think if only….


***End Rant***