life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

So much; And yet, Nothing December 7, 2016

Filed under: Life on the Jay train,Autism,ADHD,Special Needs Kids,Family — the jay train @ 8:47 am
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What’s there to talk about?

I don’t know.

There’s so much.

And yet, nothing.

A lost friendship that breaks my heart.

Maybe not lost; Strained and distant may be more accurate.

But, I’m not mad.  I’m holding out hope.

A child recovering from being sick.

Even in that, there’s good.

He did such a great job at the doctor appointment and is doing so great with his medicine taking.

Both amazing and note worthy.

A Christmas card photo shoot that …

That went well … And not.

There was a dental appointment.

There is an appointment for another dental appointment.

I’m so tired of having dental appointments.

I inherited bad teeth from both parents.  Thanks.

Not bad like, discoloured or crooked.

Bad, like I need to really stay on top of them or they are prone to cavities.

Teachers/therapists/aides/nurses gifts have been purchased and mostly packaged; with personal thank you notes.

I do enjoy wrapping gifts and making them look pretty.

There is an adult only trip to look forward to.

It’s a good distraction from thinking about the kids being away for Christmas.

I will miss them.

A lot!

But it’s only fair that I share them.

There’s a Christmas cake that made its way to us from Jamaica.

That cake was wrapped in bubble wrap and carefully packaged in a hard cake pan.

That cake is love.

There is continued home decorating.

There is a crook neck.

(You know you’re getting old when just brushing your hair causes injury)

There are the simple joys of reindeer cookie baking and family game nights and Hallmark Christmas movies and kids holiday crafts and Peppermint everything.

 

What else is there to talk about?

I don’t know.

There’s so much.

And yet, nothing.

 

NMAAHC Review December 1, 2016

Thanksgiving weekend Saturday – This was the one day that we had plans.  With tickets in hand, we headed into Washington DC.  We got tickets for the new Smithsonian National Museum of African American History and Culture months ago.  They are in high demand.  It did not disappoint.

Joining us on our day trip were 2 of our faves.  Aunty Juddles (who I talk about a lot because we just love her so damn much) and Aunty Chups, who we also love a lot.

 

I don’t even know what to say about it.  It’s a beautiful building from the outside.  Once inside you take an elevator down several flights.  As you go deeper, the years displayed on the walls, go backward until the elevator stops and you land in 1400 – The year the first set of slaves came to America.  You then walk your way back up, through a large spiral, which takes you back to modern times.  It’s quite an experience and it is a really well done museum.  If there is blood pumping through your veins you will feel something.  Maybe sad, maybe angry, maybe hurt, maybe reverent.  You will also feel awe and pride and joy.  You will smile and you will reminisce.  You might even sing and dance.  I’m not kidding.  I sang and danced.  You will definitely learn something – And as you discuss your own life experiences with your children or your friends or even the museum workers, you will also teach something.

At one point (while in the civil rights era), I turned around and found myself face to face with a mannequin wearing an actual Ku Klux Klan uniform.  I audibly gasped and jumped.  It was very jarring.

 

Hot on the heels of my face to face meeting with a Ku Klux Klan outfit, and my stomach still feeling uneasy, I saw Jay making shadow puppets on a wall screen that was showing footage of civil rights marches.  It was hilarious in a twisted way, if you can appreciate that kind of humour; which I can.  There people were, taking in all this very serious material – And there Jay was, fingers contorted, saying “Look Mom, what is this?”

A rabbit, it was a rabbit.

Later on, I was amazed and excited to see that they had included more than a couple references to Caribbean contributions to American culture.  Jamaican music, food and “higglers” were featured.

 

We had been in the museum for 4 and a half hours.  It wasn’t enough time.  But we were all starving and not willing to stand on the line for the only cafe they have.

 

If there is one bad thing to say about the museum it would be about the food.  Currently, if you leave you cannot re-enter and there is only one cafe and no vending machines.  They don’t even have snacks in the gift shop.  I am sure that as time goes on, the situation won’t be as bad but for now, the one cafe cannot handle the crowd.  I recommend going with a full stomach and if you can, pack snacks for your little ones in your bag.  An old granola bar and a squashed nutri-grain bar saved the lives of my 2.

 

Following the museum, we went to take a close look at the Washington Monument.  It was literally next door after all.  From the monument you are in direct eye shot of the Lincoln Memorial and the pool.  Both well worth visiting but we were tired and it was getting late so we’ll have to go back.  The kids are very keen on seeing the rest of what Washington DC has to offer.  (The White House and all that).

 

On our walk back to the car, we strolled through a park and took a minute to check out the ice-skaters.  Now, both the kids want to try ice-skating.  We tried it once with them a couple of years ago and Ace loved it, but Jay was not a fan.  Now he wants to try again.  Who am I to say no?  (Truth = I’m excited to take them)

 

I don’t know if we will go ice-skating in DC but we certainly will be back to check out the things we didn’t get around to.  Maybe we’ll go in the Spring when the Cherry Blossoms are in full effect.

 

 

 

*Ed Note:  In one section, there are a few images that may be a heavy pill for children younger than 13-ish to swallow.  (Lynchings etc)  The museum and its staff being fully cognizant of this, took steps to protect our little ones. Those areas/images are circled/marked in red so that parents have a heads up and can steer youngsters away.   It wasn’t an issue for us at all.

*Ed Other Note:  There are interactive things that the kids loved and a train to explore so I do think it’s appropriate for children to go to this museum.

*Ed Last Note:  Some of the pictures are dark because flash photography is prohibited inside the museum.

 

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Before anything gets started, take a selfie with the bestie!

 

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Jay sort of fell in love with this car and decided that he needed to own one.

 

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In the music area … This is just a small fraction of the gold album wall.

 

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Because … I’m black and I’m a feminist.

 

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My people at the indoor waterfall.  It’s a lot more impressive in person.

 

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Jamaican higgler on display.

 

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With the kids while they eat over-priced and not yummy tasting hot dogs and pizza from food trucks outside the museum because they were “starving to death”.

 

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Ace with the museum behind him.

 

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Up close with the Washington Monument.

 

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Checking out the skaters.

 

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Lil ol me, just for fun.  There are so many pretty buildings and landscaping in our nations capital.

 

I Wrote My Way out November 29, 2016

I wrote my way out
When the world turned its back on me
I was up against the wall
I had no foundation
No friends and no family to catch my fall
Running on empty, with nothing left in me but doubt
I picked up a pen
And wrote my way out (I wrote my way out)

*Lyrics from The Hamilton Mixtape song, Write My Way Out*

 

 

I went in as a freshman to Rutgers University assuming I’d be a science major.  I had no great passion for science but where I came from, if you were smart, you studied the sciences.  Biology, Chemistry, Physics, Math.

I enrolled in 5 classes that first semester.  After one month I dropped out of Chemistry.  I finished the semester with 2 C’s and 2 F’s.

The following semester I enrolled in 4 classes.  I closed out that second semester with 1 C, 1 D and 2 F’s.

That summer I got a letter from the school saying I was on probation and if I didn’t get myself together I would be kicked out.

I should have cared more.  I didn’t.  I was in too much of a funk.  Not about the grades.  About life.

 

I was up against the wall
I had no foundation
No friends and no family to catch my fall
Running on empty, with nothing left in me but doubt

 

It had been a rough couple of years.  I was just trying to get through one day at a time.  For some strange and unknown reason in my sophomore year I enrolled myself in a class (which to the best of my recollection was) called “The Psychology of Elementary Education”.   The first assignment we had was to write an essay.  I don’t remember the parameters we were given, but I wrote.

I sat in the computer lab for hours and for the first time in my life, I told my truth.

I wrote about my childhood.  I wrote about my hopes and dreams.  I wrote about pain and loss.  I wrote about what I thought made a good teacher.  I wrote about regret and fear.  I wrote about my interests and the things that had moved me up to that point.

I don’t know what made me do it, but I poured my heart out onto those pages.  It was the most raw I had ever been.  Something about spilling my soul to someone I didn’t know was therapeutic.  I knew my professor was the only person who would ever read it and I was a nobody in a class of about 50 students so I would still be able to maintain my low profile.

The following week, after class, my professor asked me to stay behind.  He told me how much he had enjoyed my paper and that it was the best one of the class.  It had a big A+ written at the top.  I just stared at him.  I, all of a sudden, felt very exposed and it made me want to curl up in a corner.  Then he asked me if it was ok for him to have the other students read my paper.  I must have said yes, (probably because back then I didn’t know how to say no to a professor).  I remember the next week, sitting in my usual spot, at the back of the class, while my teacher handed out copies of my heart to everyone.

 

I wrote my way out
I picked up a pen
And wrote my way out

 

Dr. Hartley changed everything for me.  He asked me who my adviser was.  I didn’t know.  He offered to take over as my adviser and I made sure to attend our meetings.

It became important to me that I make him proud.  I was really sad when that class ended.  I was worried that I would once again be left floundering.  But I found my way.  I changed majors, thinking for and of myself for what seemed like the first time.  I took one economics course after the other and I managed to get good grades.  I took advantage of an internship that I found out about and earned my degree.  The damage to my GPA from my first year had been done so there was no 4.0 or yellow sash or cum laude to be had, but when I walked across the stage, I was proud of the work I had done to bring myself back from the brink.   I had come a long way from being threatened with expulsion.

 

Before I left, I penned my professor a letter.  I wanted to thank him for all he had done to motivate me.  I wanted him to know how much I appreciated him taking an interest in my well-being and my success.   I told him I would never forget him or be able to thank him enough and that being in his class and having his ear was the highlight of my college career.

 

I have never forgotten him.

 

 

The story of Alexander Hamilton is one of a boy who had no parents or family.  After a hurricane devastated his country, he wrote an essay about his experience.  It was so good that people in his town took up a collection so he could travel to New York and make a better life for himself.

 

I am no Alexander Hamilton.  I am no Lin-Manuel Miranda.  But I do believe in the power of words.  I do believe in writing as medicine.  Whether you are writing poetry, or song lyrics or essays.  I believe in writing whether no-one but you ever reads it or if millions of people read it.

 

Write.

Let it out.

 

 

I caught my first beatin’ from the other kids when I was caught readin’
“Oh, you think you smart? Blah! Start bleedin'”
My pops tried in vain to get me to fight back
Sister tapped my brains, said, pssh, you’ll get ’em right back
Oversensitive, defenseless, I made sense of it, I pencil in
The lengths to which I’d go to learn my strengths and knock ’em senseless
These sentences are endless, so what if they leave me friendless?
Damn, you got no chill, fuckin’ right I’m relentless
I know Abuela’s never really gonna win the lottery
So it’s up to me to draw blood with this pen, hit an artery
This Puerto Rican’s brains are leakin’ through the speakers
And if he can be the shinin’ beacon this side of the G.W.B and
Shine a light when it’s gray out

*Lyrics from The Hamilton Mixtape song, Write My Way Out*

 

 

The Rabbit Hole November 28, 2016

Filed under: ADHD,Autism,Family,Life on the Jay train,Special Needs Kids — the jay train @ 10:25 am
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I’ve turned my car radio dial away from talk/news radio and I’ve redirected it to Christmas music.  I’ve stopped posting my opinions on social media.  Pictures yes, opinions no.  Once I see that someone else is posting something political or religious I scroll faster.

I’m really trying to stay out of it.  I am tired of being angry or annoyed or of trying to educate/inform/explain.  Also, I have to be respectful of my spouses employment situation and the constraints that are put on us as a result.

Then I come in to work and bring my computer back to life after being away for 4 days.  I don’t make my usual internet pit-stops … cnn.com, foxnews.com, msnbc.com.  Nope, I go straight to my Howard.  (Stern for those who don’t know).  Guess what he is talking about?  What life was like prior to 1973.  That was the year Roe v Wade was decided.  He talked about the dangerous things that women resorted to if they wanted/needed an abortion at a time when it was illegal to have one.  It wasn’t good.   I’m only telling you what Howard and Robin said. I am not the one saying it wasn’t good.  I wasn’t born yet so I can’t REALLY know.  I’m lucky that way.  In the same sense that I can’t REALLY know what life was like prior to the civil rights act or the voting rights act being passed, no matter how much information I get from a museum or from the stories that are told by the generation prior to mine.  *I figured I’d put that disclaimer.*

 

I felt the temperature in my stomach rising.  I began to think about all the things that make me feel that internal hotness.  I thought about the people who say that don’t understand why there are people who are concerned about their safety in the aftermath of a Trump win.  I thought about what I would (calmly and respectfully) say to them; From what I or my friends have personally seen or experienced.

 

Then I turned off my Howard and my Robin.  I had to – before my fingers typed things that they shouldn’t.  You know, respect for careers and all that jazz.

Instead, I decided to listen to tracks from the new Hamilton mixtape.  So far, it’s ok.  I prefer the original soundtrack.

 

By the way, how was your Thanksgiving?  Ours was good.  More to come on that.

 

I went back to Howard – I was sure he’d have moved on to a different topic and I was right.  I caught him in the middle of a Lenny Dykstra (former baseball player) interview.

 

And so, for one more day, I think I have avoided going down the political rabbit hole.

 

I already know that tomorrow I will be fully distracted by Leah Remini.  The first episode of her docuseries on Scientology will be airing.  She will be “shining light on the dark side“.  (Again, *disclaimer*, those are not my words.)  I cannot wait!!!

 

 

 

 

Four, Three, Two … Home November 21, 2016

FOUR weekends ago we drove 3 hours south to North Carolina.  We spent the weekend with friends I’ve known my entire life (pretty much).  It was awesome!

THREE weekends ago we drove 4 hours north to New Jersey.  We spent the weekend with family who we love and miss.  It was awesome!

TWO weekends ago we drove one and a half hours to Maryland.  We spent the weekend with friends who were visiting from Canada as well as friends who really are the definition of family.   It was awesome!

 

All that awesomeness wore us out.

This past weekend we stayed home.  As wonderful as it is to see all the people we love, it’s exhausting working all week and then travelling all weekend.

 

I started my Saturday with the surprise gift of a massage.  Yay and thank you honey!

That was followed by some long over due home tidying, unpacking and decorating.  We moved over 6 months ago.  The place was still bland and we still had boxes in the kitchen, nothing on the walls and plastic bags cluttering the living room.  It didn’t feel like home.

In our living room, we now have yellow and red lamps, red side tables, artwork hanging above our renovated couch and we have plant life.  We printed and framed a family picture which is now on display.  We hung curtains and got new throw pillows. Basically, we now have a comfortable space to relax that reflects some of our personality.

On Sunday, we slept in while the kids happily relaxed on electronics.  We had a huge Jamaican brunch of ackee, saltfish, plaintains, callaloo and dumplins.  We settled down in our now, warm and welcoming living room to watch a movie.  It was actually a good one.  Creed.

Overall, it was a really nice weekend.  Just us.  Nothing fancy.  But so very much needed.

 

This will be a short work and school week since Thursday and Friday are Thanksgiving holidays here in the USA.  We have tickets to visit a new museum in DC on Saturday.  Other than that, we have no plans to go anywhere.  We don’t mind one bit.  We will be quite happy to stay home and have 3 no frills days.

 

 

Progress Meeting (The Good Part) November 17, 2016

As soon as we walked into the classroom for our meeting with Jays teachers, their eyes lit up.  That immediately made us feel good.  We had barely gotten our hellos out of the way when his math teacher said, “Oh my gosh.  I just have to tell you, we LOVE Jay.”

I giggled.

His language arts teacher chimed in.  “Oh yes, he’s awesome!  We love him and all the kids love him.  They just flock to him.”

 

This, my friends, is a great way to start a meeting.

 

They talked about how stylish he is. (He often wants to dress up for school and will wear bow ties and button up shirts).  They told us about funny things that he does and says throughout the day.  The most recent being that he took a break from playing at recess to announce to the teachers that he had come up with 3 rules for what they should not do while at school.

  1.  No drinking wine.
  2. No touching dead things.
  3. No cutting your own hair.

 

Everyone agreed that those were solid pieces of advise.

 

Of course we had to talk to about the challenges he faces – Mostly test taking.  We talked about his reading comprehension level and his newly discovered appreciation of math.  We talked about his ability to keep up with the pace of the class academically and about what the upcoming state tests mean for him should he not score well.

 

I am just so grateful that we have the people in our lives that we do.  They not only want him to do well, but they are willing to do whatever it takes to help him.  They believe in him!  This is a blessing.  They communicate openly and respond quickly to our emails or phone calls.  He is happy at his school.  I would argue, that him feeling comfortable and supported is more important than the grades on the report card.  You cannot have learning if there is misery or contention.

 

Progress Report and Superflex November 16, 2016

Filed under: ADHD,Autism,autism mom,Family,Uncategorized — the jay train @ 2:54 pm
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At Jay’s progress review meeting with his speech therapist she told us about a program they had been using lately.  Immediately we became alarmed; and some of the odd things we had been seeing at home began to take shape and make sense.

 

Before I wrote this post, I looked up reviews for the Superflex system.  I thought for sure that my son wasn’t the only one who had problems with it.

All the reviews were good … until I posted mine.  I don’t often write up online reviews, but I feel really strongly about this product and I think that other parents need to be aware of it so they can make informed decisions and possibly speak to their child(ren)s teachers/therapists.

This is a program that markets itself as:

A Superhero Social Thinking Curriculum which provides educators, parents and therapists fun and motivating ways to teach students with social and communication difficulties .

 

It sounds great.  There certainly is a need for such a curriculum.  The main thing that characterizes autism is that it’s a social and communication disorder.  Our lovies (often) struggle with picking up on body language, innuendo, sarcasm, teasing and other subtleties.  They tend to do well with facts and lists and order and black and white.  No grey areas.  They are not usually the best at make believe or abstract concepts.

 

This is why it baffles me that the creators would choose a Superhero who “takes over your brain” as their base for teaching.  In the program there are things (people?) called “unthinkables” who get into the brain and make you do bad things; such as over-react to what is really just a small inconvenience.

 

Jay thought these unthinkables were real.  Think about that for a second.  It’s Scary!!!

Lately we had noticed him talking to himself and actually arguing with himself.

There were times we saw him hitting himself in the head; as if trying to get the bad things out.

 

Needless to say we asked the therapist to cease and desist with that program and that line of language.  I followed up with an email.  She was very receptive to our concerns and assured us that she would take heed.  In her own words,  “I will take the ideas/strategies and modify the presentation so it has nothing to do with the cartoon characters in the program.  We will omit the notion of something taking over your brain.”

 

Maybe in this case, I am the one over-reacting.  Maybe the program is great and maybe Jay would have eventually done really well with it.  I’m not willing to take the chance.  The last thing I want is my baby boy to think there is something wrong with his brain or some “bad guy” in his head.  That makes my brain go to dangerous places.  In the worst of scenarios, he tries to do something harmful to himself to get the bad guys out.

No thanks!!!

 

 

*Ed Note:  After publishing this I found out that this program was used with Ace also when he was getting OT.  He thought it was great and really responded to it.  I say that to say: I can see how it would be good for someone like Ace.  He loves all things super hero and any time you can make something educational into fun, he stands a better chance at picking it up.

I am not saying the program has NO use.  I am just saying that it should be approached with caution if it is being used with students who have very literal thinking and may have a hard time separating facts from fiction.