Many writers like Becca, more eloquent than I could ever be, have written about Robert Saylor’s murder. I am sorry that the Grand Jury didn’t see his death as a homicide. But it was. The question is who is at fault? The aide who left him unattended, the police officers that “may” have used excessive force or the theater worker who called THREE security officers?
Over the weekend, I spoke about my outrage that the officers didn’t understand they were dealing with a person with diminished understanding. Many of the people I spoke with are ‘in the field’ police/fire. They offered another perspective. They told me that I couldn’t possibly understand what the officers saw. That often people who are out of control maybe on drugs, may have a psychosis that the officers are unaware of, that there could be a host of other factors that impacted the officer’s judgement. We do not know what the theater worker told them, when they arrived on scene. We do not know if the aide had informed the theater worker that Robert was a man who had Down syndrome and did not understand that he could not stay in the theater. That she had called his mother and they would get him out of the theater as soon as they could.
I do not know what could have possibly made the officers think they were dealing with anyone other than a person with a disability. I have never responded to an emergency. But what I do not, and will not, understand is how this was an emergency?
We do not know the testimonies of the Grand Jury and what led to the acquittal. But we do know that Robert called for his mommy. How scary could he have been that it took three officers to try to restrain him?
The first responders I spoke with stated they do not have enough training in matters like these. They are trained in dealing with hardened criminals, drug-dealers, wife-beaters, how to respond to victims, sexual harassment, etc…but not on how to deal with a person who may have an intellectual disability. There simply isn’t enough funding to go around, right? We are laying off teachers, city workers, police and fire. They may be correct, maybe we need to place the guilt not so much on the off-duty officers, but on their lack of training.
As tax-payers, as parents, as for anyone with any ounce of common sense I think we need to demand training in deescalating a situation with a person who has an intellectual disability. And it should be mandatory. When 1 in every 88 children have autism and 1 in 691 children are born with Down syndrome, it is a good bet that safety officers will come into contact with at minimum one person who has an intellectual disability!
I reached out to our school safety officer and asked her about the training they receive. She told me that as the SRO she keeps current on her training in dealing with youths with autism. However it is not required.
It should be taught in their police and fire academies and be required core training annually.
Today is dedicated to autism awareness. But sadly, I wonder what is the point is raising awareness for Autism, for Down Syndrome, heck for Food Allergies if the most important person responding to an emergency does not have the training to help rather than to harm?
Never again should we hear that they didn’t know. Never again should we hear a Robert Saylor crying for his mommy.
Author Archives: firebailey
Why I don’t really like April
Boo is now (thank goodness) on a 6m schedule for her specialist appointments. We try to group the visits together so we only have one 2-3 hour trip but that never happens. So for the month of April it seems we drive back and forth every week.
It is really, really, really hard not to get frustrated. I do like and respect all of Boo’s doctors. Okay, not all. There is one that moved to Singapore that I haven’t forgiven for leaving us and I cannot stand her replacement. So make that I like and respect all but 2 of Boo’s doctors.
But I am constantly amazed that if you think of the amount of time, money and devotion they have spent on their profession they would have more to offer us than:
Boo is an enigma
Really, I knew that and I did not go to Harvard. Think about it, because I am not alone in this, Boo has 14 that is FOURTEEN different doctors, fellows, and researchers looking over her chart. She has an additional team of 10 therapists (between SPT/OT/PT) and let’s not forget that she has her teachers and aides that are part of her team.
So combined, the education and experience of about 30 people have no idea why Boo is the way she is and what it means for her future.
Instead this is what we are told:
- We never thought Boo would talk
- We never thought Boo would walk
- The science isn’t there yet
- Boo doesn’t fit X syndrome because she does Y
- We don’t know why she turns blue in only her hands and feet.
- You have her in all the treatments we would suggest so just keep up the good work.
- Boo is in 3 hours of physical therapy a week
- Boo is in 3 hours of occupational therapy a week
- Boo is in 4 hours of speech therapy a week
- Boo is in a special education program 32 hours a week
- Boo has a family that is integrating therapy in everything she does
- Boo has a family that will NEVER stop looking for answers–so quit telling me to stop looking.
- Boo works harder at her life than you do looking at her chart (okay, I don’t say this but I think it really loudly)
FMF: Broken
No FMF does not mean F*/*-/ my Family 🙂
It is time for 5 minute Friday. Here are the rules: Write for 5-minutes, without editing, back-tracking, over-thinking. Always hard for me to do! And in complete honesty I had to re-start this one. More than once. Because this week’s prompt brings so many thoughts.
But I worried. So worried, that the world-at-large would look at Boo and think she was broken. You know, the stares at Church or the grocery store. You know in your head that their looks and judgement shouldn’t matter. But your heart kind of breaks.
Boo has a team of therapists, teachers, aides, friends and family that will make sure she is never perceived as Broken. Instead they see Boo.
If I could hang out with any celebrity it would be….
This week’s Finish that Sentence Friday is so much easier than last week’s (thank goodness!). Off we go….
If I could hang out with any celebrity it would be…not just one. I know I am a greedy girl. Here is my reasoning.
If I could hang out with any celebrity for cooking lessons it would be Curtis Stone. You know that guy from Biggest Loser and Top Chef. Oh you don’t?
| photo credit: google images |
Hmmmmm…where was I? Oh yes, not only do I think (based on all his TV appearances) that he is a good cook, I think my kitchen would look much spiffier with him in it.
If I could hang out with any celebrity for a glass of wine it would be Sandra Bullock. I think she would just be like having a glass of wine with a gorgeous girl next door that ignored us in high school but realizes 30 years later that we are super cool. We could watch Curtis while he cooked and we sipped.
If I could hang out with any celebrity for my girls it would be Selena Gomez because then I could make Allie’s wish come true. Plus if she really is a Wizard then maybe she can use her magical powers to clean my house.
If I could hang out with any celebrity for comic relief it would be Jeff Dunham. Yes, he plays with dolls. But come on that guy is freaking hysterical. Imagine having this at the dinner table with Curtis?
| photo credit google images what would we do without google? |
If I could hang out with any celebrity for romance it would be Mark Walhberg. I know you were thinking George Clooney based on my New Years resolutions. And yes, he has a dream home on Lake Cuomo. But his girlfriend is some ex-WWF wrestler and three times my height and muscle mass. I would rather eat weird food with Phil than take her on in the ring. But that aside, I have more of a chance running into Mark in Boston than I do meeting George on Lake Cuomo. This is only, of course, in the event that both my husband and his wife were ill-disposed. Not that I am planning anything….
If I could hang out with any celebrity for my husband it would probably be the Duck Dynasty guys because then they could take him hunting. I wouldn’t have to go, right? Maybe Mark would be available that weekend 🙂
If I could hang out with any celebrity for travel it would be that guy from the Amazing Race who I cannot think of his name right now. I could google it, but you know who I mean. Phil something. It doesn’t matter, really. But imagine all the cool places he could take us to and the adventures we would have. Other than sky diving or bungee jumping or eating weird food. Never mind,I would like to change my pick to Oprah for traveling partner. First class all the way, Atlantis and I am sure her friend Gayle would make awesome accommodations for us.
And that is how I finished the sentence this Friday. I probably should have been more high-brow and chosen a Saint or some who uses their celebrity for good. But, well….that is just not me!
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I’m exhausted, so I am doing a quick mind/blog dump!
I am so freaking proud of my nephew. He is part of the reason I am exhausted. Yesterday we woke up at 3 freaking AM to attend his swearing in as a Seamen before he left for Basic Training. I already miss him. He doesn’t live close by but thanks to the Bruins we text every time a game is on.
Speaking of the Bruins…you would think I would go to bed early? Right, I mean up at 3am…but no I stayed up to watch the battle with the Canadians. That we lost. I think the big, bad B’s had better shape up soon. Thankfully my nephew got spared the game. Although my other one was tortured with me.
Boo is sick. Again. With the creeping crud. Kristi I swear if her and Tucker keep kissing…kidding! Of course, mom of the year that I am, I sent her to school. No fever and she wasn’t cranky. So I figure go and get well.
My friend, who lost a child to SIDS a year ago is doing a fundraiser in her son’s name Colby’s Crusade. I do not know how she survived the experience. I think of all I go through with Boo and am feeling so blessed. That Kandi would not hide under the covers, but share her story and help prevent another parent having to suffer. I am in awe. SIDS is the leading cause of death in babies. More than cancer, Cystic Fibrosis or heart disease. Before Kandi told me, I had no idea that an estimated 8, that is EIGHT, babies die every day from SIDS. And there is no science that can tell us why.
And I get ticked that Boo is undiagnosed.
On a lighter note, the hubs and I actually watched a movie together and it was Disney (yeah us!). Rock of Ages, you would think with all the talent, Alec Baldwin at least, it would be a good movie. It was one of those you were positive would improve. But not so much.
Of course now I have an 80’s soundtrack playing over and over in my head.
Okay now going for caffeine. End of brain dump, thanks for reading my exhausted thoughts!
Are you in or out?
Are you out of the closet? The blogging closet, not the other one where I hid the fudge brownies!
I am ‘out’ to about all of 6 people that I know in my real life, as opposed to this still-toddler stage virtual one. This number does not include my husband, who has been told TWICE, but sometimes manages to forget. Only two of the four read on a regular basis. The others, I am not sure if I ever drew the map on how to get here. If they do visit here often they never let me know.
I remain on the threshold of that closet door wondering if it is a good decision to come out or safer to remain inside. On one hand, I get to use this forum like a therapist couch and on the other I am sharing more with strangers than my own circle.
In typical Kerri fashion I devised a pro/con list:
- I don’t offend anyone that I will meet in the grocery store. Like the time I complained about the friend who drank all my wine.
- I can be heartbreakingly honest without fear that a friend will be calling to ask me if I am okay. Because you just know I will respond, if you read the blog than you know I am not!
- I don’t have to worry when I complain about how some random comment hurt my feelings and making that person feel bad.
- I can say anything on this blog without a care that what I say may be misconstrued, gossiped about or whatever. If I don’t like something you comment on this blog I can delete it (like that SPAMMER who tried to sell you something in my comments section) and move on.
- I am potentially limiting people who can help Boo.
- I am definitely limiting their understanding of her.
- I am shrinking my village/circle/support system by not being honest
- Staying in the closet where there are brownies, I am definitely not offending any family members when I vent via blog. Just imagine the Yankee Swap at Christmas if I tick off a sister-in-law.
- I am not getting phone calls that asks was it X who said that about Boo?
- I’m not getting calls from Mom either in embarrassment (what did you & Tia do in SPAIN!) or in worry (why didn’t you tell me you broke!)
- I am not letting Boo’s friends and family know all about her hard work and triumphs.
- No one is telling my husband all of the crazy things I write. (total bonus)
- By staying in the closet I may not be helping friends who are too scared or tired to ask for help
- I am not boring any friends who get tired of Facebook posts about the “R” word, World Down Syndrome Day and fundraisers for my favorite cause Children’s Hospital. Although the fundraiser included beer so they probably didn’t mind that one as much.
- I might get more Top Mommy votes and move up from oblivion (warning shameless plug below)
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After reviewing the list, I am still on the edge of the closet. Because I started this blog as a means of therapy. A place I can say anything and not worry about anyone else but me. Then as it evolved into a daily occurrence (something I never imagined) with followers, I thought it was too late now to tell people.
Do I send a birth of a blog announcement? Or a hey, I’ve been keeping a secret announcement like I did for Jenn and Tia.
Plus, I think there are brownies and wine around in this closet, for sure somewhere. Probably under the shoes….
How to know if you are a mom
Quick disclaimer…this is not a dad bashing. But sometimes we all question (at least I do) if we are moms or something less. And taking a riff from Jeff Foxworthy I have come up with my own list to decide if you are a mom or not quite yet.
If you can tell instantly upon walking into the house the difference between your child’s hazmat, your dog may have pooped on the floor or your husband just broke wind…you might be a mom.
If your child wakes up at 3am and can find you snug in your bed, after traveling up a flight of stairs in the dark and totally bypassing the other side of the bed, the one closer to the door….you might be a mom.
If you get called at work to find out if that shirt that is folded in the laundry basket is clean or dirty and/or if that thing is the fridge is still good to eat…you might be a mom.
If you can tell by your child’s cry over the baby monitor if they will be going back to sleep quickly or if you need to run into their room to prevent a full-scale meltdown…you might be a mom.
If you can simultaneously cook dinner, do the dishes and stop a sibling squabble without burning anything…you might be a mom.
If you would rather lay on the couch and snuggle your child (at any age) instead of going out on a Friday night…you might be a mom.
If you eat the last fudge brownie in the laundry room while you let your child watch another hour of TV….you might be a mom. Heck, if you ate the whole tray of brownies in the laundry room you are definitely a mom!
If you have held a child on your lap while you have ate, drank or peed….you might be a mom.
If a child has crawled into bed at 3AM and it took the man person on otherside of the bed 4 hours to realize that there is a third person there…you might be a mom.
If you understand that meltdown-thirty immediately proceeds wine-thirty…you might be a mom.
If a child has broken and mended your heart at the exact same moment…you might be a mom.
If you have woken up on a Monday morning and thought to yourself thank God they go to school today…you might be a mom.
If you know the schedule of the PBS programming without looking at the guide….you might be a mom.
If you have ever turned a child upside down in public and sniffed to see if a diaper might need changing…you might be a mom.
And last but not least….
If you read this post and not only laughed but nodded your head…you might be a mom.
So, how do you tell if you are a mom?
Five minute Friday: Remember
Today’s Five-minute spark is: Remember
Remember when we first met? We were twelve and there was a crazy teacher in the room who wore rocks on her head. Thru fate we sat at that science table together. I was shy, you were pretty. You asked me over that day afterschool.
It was the first time a friend had invited me over, just me, that I can recall.
We were fast friends, ultimate confidants. We spent weeks at each other’s houses. I always wanted to spend more time at yours. You freaked me out with horror movies. I had to move my bed away from the windows after one Jason movie.
We traveled to Spain together, with a contract your mom made us sign that said we wouldn’t let others come between us, we would not fight and we would not leave the other alone in a strange country.
You taught me how to use a tampon, in Spain of all places. And when it fell out because I did it wrong you were the only one not to laugh but call encouragement and more explicit directions through the door.
When my family fell apart, you stood by. When you had the life I envied, you always made sure to I was a part of your adventures. You went to college, married and traveled to another country without me. Yet you were always there.
Then you moved back and we found that even years and miles apart, we were still as close as when we were 12.
We have survived break-ups, marriages and childbirth. When I had Allie you were there with joy. When I had Boo you were there with joy and more importantly understanding. You are my rock, my friend and my sister.
Remember when we were 12 and there was that crazy woman teaching a class with rocks on her head? Who would have thought we would still be holding on 30 years later……
Be sure to visit the host, Lisa-Jo Baker of 5-minute Friday at
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If only I could make her wishes comes true
Yesterday morning I was cleaning out Allie’s backpack. I know, most mom’s are on the ball and clean out the backpack the night before to make sure there wasn’t homework. Me? I wait until 10 minutes before the bus comes. Innocently enough there was some St. Patrick’s paperwork. A piece of paper with a 4-leaf clover where Allie had to write four wishes.
1. To see Selena Gomez
2. For Boo to stop having special needs
3. To stop having bad teeth
4. I would love some nice horse books
Okay, wish #1 is probably out. I do not think Selena Gomez tours. But I will set a Ticketmaster alert! For wish #3 I know this is due to her having a pallet expander put in her mouth last week. It has not been fun. And I can totally grant wish #4 in her Easter Basket next week. But back to the wish that broke my heart. How do you explain to your child that their sister/brother will not be ‘cured’?
Allie seems to take Boo in stride, I thought. Out of everyone Allie seems to take Boo as she is, just her little sister. Of course I had to ask. First I asked what Allie meant by special needs. In Allie’s mind, special needs meant that Boo takes longer to learn stuff, things are harder for her and she has to spend so much time in therapy.
I explained to Allie that Boo cannot be ‘cured’ (I know, MOM–with exaggerated eye roll) but that she improves with every therapy appointment. That only a year ago Boo barely talked and now she has about 60 words and just started using 3-word sentences. That today she can jump, ask for a cracker and climb up and down the stairs.
Allie told me that if Boo wasn’t in so much therapy then maybe we could do girl scouts, gymnastics, play-dates. I didn’t want to shatter her innocence that it was my fault she wasn’t enrolled in any of that stuff. Team sports gives me nightmares. Have you seen Dance Moms? No way in hell am I going down that road. I will take 15 therapy appointments a week!
But this comment opened my eyes to what we are doing wrong with Allie. I thought that by having her attend Boo’s appointments she would have a better understanding and be able to work with Boo in a positive way. And she has, I have seen Allie tell Boo to use her words or how to make her use skills learned in OT. She can explain to her friends why Boo doesn’t understand or act like a typical 4YO. However, I did not realize that Allie is beginning to resent having to spend 2 hours a day after school at the therapy center. She wants to be home or with her friends or anywhere else. This is something, though, we can fix. We can have some one pick Allie up afterschool so she doesn’t have to attend every therapy appointment.
However, she is not going to be able to do team sports. I am not that accomodating!
Got socks?
The United Nations has designated March 21, 2013 as World Down Syndrome Day, a day to recognize terrific individuals who have Down syndrome. Countries from around the world will be wearing Lots of Socks to celebrate! I want everyone I know, either in real-life or this blogging one to participate.

On 3/21/13, to celebrate the unique Down syndrome person, please participate in Lots of Socks! I am inviting you (and everyone you know) to wear brightly colored socks, mismatched socks, long socks, short socks, printed socks, one or two or three socks. If socks are not your style consider wearing a blue or yellow t-shirt in recognition of our friends who have Down syndrome. Or better yet, do both!
This is a great way to demonstrate that although the socks are different, they are still socks. Just as a child with Down syndrome (or any special needs) is still a child.
For those who may not know, children with Down syndrome are born with an extra chromosome 21, giving them 3. The good news is that with knowledge and medical advances the life expectancy for people with Down syndrome has risen from age 25 in 1983 to age 60 today! People with Down syndrome attend school, work and participate in sports and other extracurricular activities. And while all people with Down syndrome experience cognitive delays, the effect can range from mild to moderate to severe.
So just like any child, a child with Down syndrome has unknown possibilities.
I hope you and your children will celebrate the extraordinary lives of people with Down syndrome by wearing lots of socks on 3/21.
For more information:
Massachusetts Down Syndrome Congress http://www.mdsc.org/
National Down Syndrome Society http://www.ndss.org/Down-Syndrome/
World Down Syndrome Day http://www.worlddownsyndromeday.org/




