life on the "j" train

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

70 Damn Percent August 24, 2016


That’s what I friggin get.

I came here and talked about how calm I am heading towards the start of the new school year.

Well, that calm has gone down the toilet.

The place the kids used to go before and after school raised their prices by 70%.  Yeah.  SEVENTY damn percent.  We can no longer afford it.  I mean, we could afford it but then we’d be homeless, so personally, I don’t think that’s a good option.


So now, with less than 2 weeks left before the start of the new school year we are scrambling to find an appropriate child care provider.


There are logistics issues.

The former place had opening and closing times that were very convenient for us.  The options we have now [due to what we can afford] don’t open until later in the morning and they close earlier.  That means if I drop the kids off, I will not be able to get to work at my customary time – which is fine because I can change my hours and just stay later but then I will hit more traffic (I already hit A LOT) and I’m not sure I’ll get back to the facility in time to pick the boys up.


Yes I do have help from Shaunee so under normal circumstances we should be able to figure it out – But sometimes she travels for work – It could be for a week or a month at a time – so I need to be able to do drop offs and pick ups on my own if necessary.


Every time we have to find a new care giver for Jay it fills me with anxiety.  Even though he’s come a long way, he still needs help and accommodations.  Will they get frustrated with him when he doesn’t want to eat the snack they prepared?  On the days that he wants to, will they allow him to sit inside and draw pictures while everyone else is outside playing tag?  How will they treat him when he yells at another student for taking one of “his” toys?

Each and every time I take him somewhere new and leave him with new people, it’s in the back on my mind that they (whoever they are) will not be equipped to handle his needs.  Maybe they won’t want to “deal” with him.  Maybe they will try.  Maybe they will try really hard even but then call and ask that he be picked up; and not brought back.  THEN WHAT?


But the real sucky part about this for me – As the parent of an autistic boy – Is that the boys were happy there.  They were liked and well taken care of.  They were comfortable.  They had made friends.

We made a big change in April when we moved and my children – who like consistency and routine – had a lot of new things thrown at them.  They were marvelous through it all.  But I would really have liked to keep any additional changes to a minimum for a while.

Now, no matter where we decide to send them, they will have to get used to a new routine, new staff, new children, a new environment and culture.

They will be fine; they are amazing boys who have shown their ability to adjust is top notch.

This may turn out to be a great thing.  In time, they may be even happier and more liked and have even more friends.  The staff may be even sweeter to my Jay and more loving to my Ace.  But it still makes me so mad.


Uncharacteristically Calm August 23, 2016

The boys go back to school in exactly 2 weeks.  I should be freaking out.  They have special needs.  ADHD and Autism to be specific.  They need 504’s and IEP’s which means I will have to fill out lots of paperwork and attend many meetings.  We will fight over homework and I’ll get annoyed when I’m tired but still need to pack school lunches.  We will all need to wake up earlier.

We had to spend money on too many school supplies and school clothes and shoes.  Back in New Jersey they wore uniforms.  Not so in Virginia.  I love school uniforms.


In years past, I’d be writing lenghty letters to each of their teachers detailing do’s and don’ts and fyi’s and just in cases.  I shared things that worked in the past and things we had been trying over the summer and things to expect.  I begged them to please just have some patience with my boys.  Work WITH them.  Work WITH me.  I’d give them all my contact info – even though the school (and presumably they) already had it.  I needed them to understand down to their core that they could get in touch with me at any time for any reason.  I needed us to be on the same page … The page that said there was no such things as over-communicating.  I hoped to relay that I was there to help them.  I was on their side so we could all be on my sons sides.


Normally I’d be scared to send them back to school.  Heart pounding.  Not sleeping.  Not eating.  Nail biting.  Scared.

New teacher.  New expectations.  It all worried me.  Would they be alright?  Would the school work be manageable?  Would Jay tantrum and make his teachers day miserable?  Would Ace talk his teachers ear off or be seen as weird by the other kids?


The boys go back to school in exactly 2 weeks.  The supplies have been purchased.  The new clothes are folded and hung.  The book bags and lunch boxes are sitting in the corner – waiting.

The IEP and 504 meeting notices will come when they come.  No big deal.  For the most part things are already in place.


I do not have any draft letters in my documents folder.  I am not freaking out.  I am calm.

The boys have really gotten into the swing of things where school is concerned.  They understand themselves pretty well and can communicate pretty effectively on their own behalfs.  I have found that teachers generally do want the best for all their students and will do what they can (and/or need to) do for each of their students – without me asking them to.


I feel confident that I can send my loves off to school and they will be fine.  Will issues pop up?  No doubt.  Will we all handle them on a case by case basis in the appropriate way?  I do believe so.

I feel supported.  At home and at the schools.


3rd grade and 5th grade will bring unpredictable challenges.  This school year will be interesting and bumpy and we will stress out at times – But it’ll be OK.  I’m ready.  Excited even.


Competitive Me August 15, 2016

Filed under: Family — the jay train @ 3:05 pm
Tags: , ,

Mentally, I’m pretty chill in general.  Laid back.  Easy-going.  All that.

Until I’m thrown into a situation where I can either win or lose.  I like to win.  Usually it’s with something physical – Not chess or anything brain related.  I know my limits.  Plus, I’m just more entertained by activities that are technically exercise but are disguised as fun.  (Not Zumba!  Ugh!)

I’m not strong (mostly because I don’t like the dreariness of working out).  I’m not big (I’ll chalk that up to genetics) – But I am agile and have an adventurous spirit.  Things like zip-ling, rope obstacle courses and white water rafting all have my name written on them.

It’s a shame really, that I haven’t channeled that spirit into becoming really good at something.  Tennis.  Diving.  Gymnastics.  I could’ve been an Olympian or at least gotten a college scholarship.


At our recent camping trip, we did an impromptu limbo contest.  I started off as a spectator.  I was enjoying watching the kids do their thing.  Then one adult after another decided to try their hand, err, back, at limbo so I had to throw my hat in the ring.  I ended up winning.  Just sayin’


Shaunie and I decided to go mini-golfing the other day.  We played the first round without keeping score.  We were just having fun.  I don’t know for SURE who won or lost although my ball ended up in the bushes and in the water and rolled all the way back to the starting point on several occasions.  But who cared?  Then we decided to play another round – This time keeping score.  I buckled down and with a couple of birdies and mostly pars I pulled out a win.  Boo yah!  I mean, it was just nice being out and about and having some good, clean fun.


My arms are feeling a little jello-ey today as a result of the rock climbing adventure that we went on.  We spent some time learning how to harness ourselves and how to tie double figure 8 knots and how to “belay in”.  Then we were let loose to tackle the wall or walls of our choosing.   At first we tried a fairly simple wall.  Everyone in our group did it.  Then I wanted to try a harder wall; One with an angle or a ledge that we had to go over.  I made it over the first little ledge but then failed to go over the 2nd ledge.  I felt good about my efforts though and was ready to go again.  One man that was in our group said he’d try the same wall I had just failed on, and even though he made it to the top, I don’t give him any credit because he chose an easy route that didn’t have any ledges.  Next I decided to try an even harder wall and although I wanted to quit a couple of times and Shaunie had to push me to keep going, I was so proud of myself for making it to the top.  Believe me, I was happy too to let go and be lowered down.  The same man who had tried my previous wall decided to try this one also and quit half way up.  I yelled to him that he shouldn’t give up but he didn’t listen to me and asked to be let down.  We weren’t in competition with each other but I’d be lying if I said there wasn’t a big part of me that felt extra proud of myself when he didn’t complete it.  In my mind I had won.


Now if I can just find a way to turn this competitive streak I have into something worthwhile then I’d really be in business.

Alas, following all that hard working out at the rock wall gym, we went out to eat where I had a delicious high calorie alcoholic drink, bread, an appetizer, a main course AND dessert.

Oh, and I’m chowing down on a bag of skittles as I type this all while dreaming about my bed.  I think the Olympics are out for me.


The Happy Depressive – Confession August 11, 2016

Filed under: Uncategorized — the jay train @ 9:53 am

I have a tendency towards being depressed.

I am mostly optimistic and “glass half full” and cheery.

I am not and have never been suicidal – But I understand people who are.

I know that’s a dark thing to say.  I’m just keeping it all the way real.


When I am in my down mood, I recognize it for what it is.  It’s not me reacting to something bad that happened.  It comes out of nowhere and there’s no explanation for it.  I don’t really worry though.  I know the things I am feeling are not real and that they will pass.  I am patient with myself.

But it doesn’t make it any less real in the moment.


Lately, I’ve been in one of my down moods.  There’s no legitimate reason for it.  I know that.  I feel blah and tired and I wonder what the point of all this is.


I can still have fun in the midst of these feelings.  Partly, it’s me forcing myself to do what’s necessary or expected, as in, work related things or family functions.  I have mastered that.  Partly, it’s that I’m genuinely having fun, as in, driving in a convertible with my love or laughing with friends or talking on the phone with my boys and hearing about all the pizza they’re getting to eat.


I don’t mind feeling sad.  That’s a weird thing to say.  But it’s true.  I like the quiet and solitude of it.  I like being in my own sensitive feelings – by myself.  I like the tightness in my chest.  It’s like I can feel every heart beat.  That makes me feel extra alive.

I like listening to sad songs and driving in the heat without the AC and falling into bed before 8pm.  It all feels soul healing.  Rejuvenating.

I know — It’s all a contradiction.


I’m looking forward to this weekend.  I’m ready for some quiet time at home.  I’m ready to put things back where they belong; (we’ve been traveling for the past 2 weeks or so).  I’m ready to spend some quality wife time with Shaunee.  We can go to the movies (which I like) and we can go out to eat (which I like) and we will go rock climbing (which I like).  It will be good.



I don’t need help.  I know what I need to do.

I just need to go through it.  I just need to wait … and feel.

The other side always, always, awaits in a couple (or a few) days.


Today is a good day.  The tide has turned.

I am happy.



Missing Them August 2, 2016

I miss my boys.

They’re spending a month with their Dad – Which is important for all of them – But I miss my boys.  A month is a long time.  I mean, it will be a long month for me since I’ve never been away from them for that long but it won’t be long enough for CC who hasn’t gotten that much time with them in ages.  I get it.  That doesn’t make me miss them any less.


I was looking forward to the quiet time at home.

Sleeping in.  Organizing closets.  Not needing to get anyone juice.  Coming and going as I please.  Manicures and Pedicures.  Netflix … and Books!


All I want to do is call them.  I want to know what they’re doing.  I want to know what they ate.  I want to remind them to brush their teeth properly and not to over do it with the TV watching.


I know their Dad is fully capable of taking care of them.  Still, I want to send them to bed at the right time and monitor their candy intake and check that their outfits match their shoes.


In my head, I hear them calling for me even though they are not here.

It’s too quiet.

But, ahhhhhh, it’s quiet.  I needed some quiet.


I have lots of things to keep my mind occupied till they come back though.  There are 2 weddings and a weekend getaway.  I’m looking forward to all of it.  But I miss my boys.


They’re all done with summer camp and we just came back from our annual camping trip.  When they return home we will be in full on school mode.  3rd and 5th grades.  Ace’s last year of elementary school.  Yikes!!!

I didn’t write much at all about their summer camp experience.  There wasn’t much to write.  They both did great.    I’m really proud of them.

At camping, we got to see people we love but don’t see often enough.  We played games and went to the beach and ate delicious food and laughed and soaked up the quality time.  It was awesome.  I’ll post more about that at another time.


Anyhoo – I’m not sure when I’ll post again.  With the boys being gone, I don’t know if I’ll have much to say.  Did I mention that I miss them?


We’re Full Of It July 27, 2016

The other day I was talking to a long time friend.  As usually happens the conversation bounced around quickly from politics to jobs to physical fights (I’ve never been in one) to relationships and finally landed on kids; And more specifically helping them with homework.


This friend has no kids so he was just in the conversation for entertainment purposes; Not to commiserate.


I confessed that sometimes when I’m helping the kids with their homework, I don’t actually know what I’m doing.  I mean, it’s been a LONG time since I had to manually add fractions.  Find the common denominator, change the original numerators, add them together and then simplify.

I told him that the worst part isn’t that I have to re-teach myself before I can help with the homework … The worst part is that the kids expect me to know the answers to everything so when I balk, they give me a look which is a combination of shock and disappointment and then it turns into amusement.  Ace will tease me about being as old as I am and for not remembering what I’ve learned.  “Mom, how long ago were you in the 4th grade?  Was it like 100 years ago or something?”


I went on to say that as much as I’d like to say that I take it in stride, the truth is that I usually say something like … “Don’t give me that look.  I had to remind you to brush your teeth this morning and you put your shirt on backwards, so, there.”

Real high level parenting happening around these parts.


He was dying laughing at my pettiness.

The truth is”, I continued, “basically all parents are faking it.  None of us know what we’re doing.  We’re just trying our best to do as little harm as possible; But you don’t realize that about your own parents until you are one yourself.”

We had a good laugh.


Later, I was relaying that conversation with yet another friend.  This one does have children.  He agreed with me wholeheartedly and added his own flavour.

Apparently when he’s helping his child with homework, and then he gets stumped, he will suddenly “need to use the bathroom”.  Then he will privately use Google or YouTube to help him figure out the question.


That’s brilliant!” I said.  “I’m gonna start doing that.”

Yeah, it’s great except my son thinks I have chronic diarrhea.”

Diarrhea or realizing you’re not as smart as they thought?  I’ll take diarrhea.”





I’m Not Lying July 25, 2016

Over the last year or so I’ve written and said a lot about how great Jay is doing.  The amount of time I spend talking about his bad days or his meltdowns or my frustrations have dropped dramatically.  That’s partly because as he gets older I feel like it’s less appropriate for me to talk about his bad days in detail but the bigger part is simply that there is less to talk about.

He really is doing great and he rarely melts down anymore and he has gotten so much better about being in new situations with new people and he is doing a fantastic job of communicatiing effectively.


The thing is, though, Jay does much better in familiar surroundings and with familiar people.  Even if the people are familiar, he is not a big fan of crowds or too much frantic activity.  He likes calm.

That means there are times we go to someones house for a party or we go to a show or to the zoo or camping and Jay loses his cool.  There are people there who don’t see him everyday but they follow along with me touting his progress and then what they see doesn’t jive.

Sometimes, I wonder if people think I’m lying.  They would be justified to wonder.  The rare occasion they do see him, he has one (or a few) rough moments with yelling or crying or other difficult behaviours.  They aren’t there everyday to see his good manners and his sweet overtures to his brother and to hear him randomly tell me that he loves me or to get his hugs and kisses and to laugh with him and play with him in his most comfortable environments.


Recently, we went to a (not for a little kid) birthday party.  I guess it was more of a casual but delicious dinner, get together, talking and hanging out with yummy yummy desserts but no candles or singing but take a way containers so I could bring delicious lunch to work and now there is left over yummy yummy lemon meringue pie in my fridge, birthday celebration.


It was a Sunday evening just over an hour away from home.  Going would mean not sticking to our evening routine.  We would no doubt be out past bedtime.  There would no doubt be people there who we don’t see often.  There could be loud noises or strong scents or any host of other triggers.


Jay was wonderful from start to finish.


He greeted people with hugs and kisses on the cheek and he entertained himself and he told the other children they needed to be nice to each other when they weren’t getting along and he asked nicely when he wanted things and he answered questions that were asked of him and he shared his knowledge about what the sun is made of and he tidied up the toys when it was time to go and he followed the rules about only eating in the kitchen and he threw his garbage away without being asked.


A friend who was there told me repeatedly how good he’s doing.  How impressed she was by him.  How far he’s come.  She thought everything he did was cute and everything he said was funny.


It was really nice to hear that.  I mean, I didn’t NEED to hear it.  I know he’s awesome and smart and cute and funny.  I know the important thing was that HE felt happy and content and relaxed.  But it was nice to hear from someone else.




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