Welcome to Monday, everyone!

What a weekend. Have I ever mentioned before that I am the least crafty person you would ever hope to meet? Well, that lack of craft-ability crosses over to landscaping.

I really love beautiful yards. I really hate yard work. But this weekend for the first time since sometime in October the weather was beautiful. I had no excuse but to get out there and weed the flower beds that still had last year’s expired daisies. I keep envisioning a Better Homes & Gardens cover shot when I picture my yard. Except it looks more like the Clampetts.

Where all the leaves came from I have no idea. But I used muscles I didn’t know I had in my arms, hands and back. And there is still about another 5 million more. I left those for the husband since my flowerbeds were finally clear. I thought of it as a gift, him not so much. He hates yard work too.

The girls had fun though. I probably should have taken out the camera to capture them running around, blowing bubbles and just enjoying being outside. Boo even went on the grass and the mulch by herself, no prompting. Guess the grass will no longer work as a fence to keep her in the yard. This is when you think, why are we doing therapy? She was so much easier to contain before!!!

And bonus, no shoes went into the fire pit!

Then this morning we had the monthly workshop with Boo’s special ed program. As much as I used to hate this process, really more that I found it overwhelming, I have come to love the workshops. To see how they are working with Boo and being able to incorporate some of the skills at home. It is also nice to be involved in the process. To let them know what behaviors she is exhibiting at home and be provided some thoughts on how to keep Boo engaged.

Boo has really come along way. Recently she seems to be making such progress. This weekend she danced (okay fancy word for jumping in place and waving your arms) and spun around. She made me ‘dance’ (or my version of running in place man) to Austin and Allie about 100 times.
 
Well, this turned into more of a weekend update! I am thinking between dancing and yard work that should count as exercise, right? Because it is always good to end the weekend on a positive note. Even if Monday morning means you have to go to work!

It is time to join Lisa-Jo for 5-minute Friday. The time of day where you write for 5 minutes,unedited, just to show you can.  Today’s prompt: After

Ready, set, go….

After I grow up I will do something meaningful.
After the kids go to bed I will relax.
After the husband goes to work I will clean the house.
After, after, after….

Why do we wait so long? I mean, I am the absolute worst at this! I put stuff off all the time. Not the important stuff, like taxes and work or family related. But “me” stuff. I am forever saying I will get a pedicure, when there is time. I will meet out for a girls night, after everything else is taken care of. I will read an adult book after I put the girls to bed.

Not that I don’t enjoy my life. But there is so much I am putting off until AFTER I do this one thing….

So why do we always wait for AFTER? Why can’t we live in the now! We put everything and everyone before ourselves, leaving our needs for after. After what? For after World Peace? For After our kids are grown (which sadly will come way before World Peace)?

I don’t have the answer for this one, but maybe after work today I will….

Time’s up!

Happy Friday everyone!

Be sure to link up at:

 

This week’s Finish that Sentence Friday is a typical day in my life looks like….

My day? That is just so boring and uneventful. Plus you get to read about it here everyday!

I thought what a typical day in my life if it was casted by Disney (blame my girls and their obsessions).

9am I would wake to the sound of beautiful theme music and sunshine. Not the kind of sunshine that blares into your skull like a solar flare. The nice, warm sunshine that makes your skin glow. Glow like you are a vampire in Twilight (okay, not a Disney movie. Already off-topic, are you surprised?). 

10am after a long, blissful shower where the only sounds I heard would be birds chirping I would come down the grand staircase (without tripping) to see my children dressed in their best gowns without a smear, smudge or wrinkle. They would be sitting quietly awaiting my morning smile. As we proceed to the dining room to a healthy, already made and still warm breakfast we would talk about the adventures they would undertook in their dreams with their Nana (the dog from Peter Pan).

11am breaksfast would be over and the girls would go with their day Nanny (Mary Poppins, of course) and stay perfectly content. They would sing songs and do crafts or whatever Nanny’s do with their charges.

From this point on I would spend the day lunching with friends, going to the gym (no scratch that, if this is a Disney movie I would be in perfect shape), playing classical music on not just one instrument but five and I would not have one hair out of place. Oh and I might pencil in a pedicure.

Of course all the household chores would be performed by a nice young girl and her hand maidens.

6pm the family would reassemble in the dining room for a gourmet meal, a meal my children will eat without complaint. The girls would sit in their seats (read: not on my lap). Life would be in perfect harmony.

8pm both girls would be snug in their beds, watched by faithful Nana. I am sure Mary Poppins is out somewhere with Bert.

The husband would be home from a hard day of fighting the evil witch. We would go out for a nightcap or two (hey, I was off the Disney-theme in paragraph 1). My hair would still not be out of place….

Oh, crap. I just realized all the moms in the Disney movies are dead. Never mind! I will keep my life, as boring as it is!

Please join the FTSF hosts:

Dear Mother….Nature that is,

Are you feeling okay? I am wondering if perhaps you are suffering from menopause or the flu or some ailment that has confused you.

It is April. Not January or February. March is over. Last night my heat kicked on and I had it set at 58 degrees. I had to wear flannel pajama bottoms. Boo had to wear her thermal sleeper.

It was 24 degrees this morning when I left the house. I had to start the car early and defrost the windshield. We had to wear our winter coats and to Allie’s dismay she had to wear a hat.

It is April. You need to turn up the thermostat. My daffidolis are frozen and my tulips are stunted. You do not need to go too high, like 98 degrees in July. But I would appreciate something in the high-50’s if it wasn’t too much trouble.

With warmest regards,
Kerri

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.

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)