Friday, September 12, 2014

The Bus Saga

This is Brayden waiting for the bus.
The bus never came. We were told NO bus for the first week of school, so I drove him. Told bus would be there Monday, NO bus. Assistant principal called transportation, told him we had a bus, but NO bus again on Tuesday morning. We originally heard that over 60 special ed kids in our county have had major bus mix ups this year (later to find out it was more than 100). Most of these kiddos attend school outside their community and need to get to a school that can serve them. Now many have missed school or been tardy because of transportation. Even once they are at school, transportation has been unreliable; one girl was there after school for an hour because a bus never arrived, another child given the wrong route (thankfully the school figured it out before the bus left), bus showing up for children that don't even attend that school anymore. 
Transportation offers no explanation or apology, they hadn't even been answering the phone.  It is ridiculous. 
Sending your special needs child off to ride a bus is terrifying.  Brayden's first couple of years I followed the bus on several occasions.  You have to put a lot of trust in transportation...I believe that trust has been broken this year.
Tuesday I dropped Brayden off at school, again.  I attempted to call transportation.  No surprise, they did not answer and still had not called me back from a few calls last week.  I cannot believe they would not take care of the most vulnerable students.  The more I thought about it, the more bothered I became.  The assistant principal at Brayden's school had been working hard to work with transportation but was getting no where; and it is the start of school so he has many other responsibilities.
I came home and called the Superintendent's office.  I talked with his assistant and she directed me toward an Assistant Superintendent who over sees transportation.  He listened.  I explained the problems, stressing that I was not the only one with the problem, the problem was huge.  I stressed that our assistant principal was working hard to fix the problems but not getting any real resolve.  The Assistant Superintendent was kind and seemed completely unaware of the special ed transportation problems.  He apologized and promised me that I would hear something back shortly.
I politely told him that I was headed back to Catoctin to pick up Brayden at 2:00 because I had to get back to Waterford in time to get my other children.  So you can imagine my surprise when a woman from transportation met me in the parking lot while I was picking up Brayden, calling me by name.  She attempted to explain the situation...funny thing is we got a different explanation than the school and the bus drivers; she told me that the person who coordinated it all left in July and all the info was locked in her email. The school was told the bus drivers forgot the route.  And the bus drivers were told the school did not send the paperwork in time.  Any parent that does an IEP and transportation request, knows that we complete that paperwork long before the previous school year has completed, many people sign the forms and we get hard copies once submitted.
After the woman from transportation explained Brayden's bus times and route, I asked the woman to go in to the school office to explain it all because Brayden was not the only one (I would like to assume that was her plan any way).  After she left I met Brayden's afternoon bus driver in the parking lot who told me that Brayden's morning bus driver and afternoon just got the schedule this afternoon...thus Brayden (and I am assuming other kids) were not planned for at all.
After I left the school, the Special Ed Transportation Director actually called me back (not so friendly), tried to offer some explanation and go over Brayden's route.  Then Brayden's school called to check that I got the same info as they did.  
Talking to the Assistant Superintendent got things moving, rather quickly!
Come Wednesday morning, Brayden's bus arrived.  And in a separate car, the woman from transportation came as well, to make sure everything was working out.
Brayden loaded the bus. 
I was happy to see the bus...Brayden not so much.
Brayden's afternoon bus brought him home, no problem.  And it worked out for the rest of the week.  I only hope it is working for the other kids.
I still cannot believe transportation was such a mess, they offered no truthful explanation (only offering an untruthful explanation that suits who they are talking to), and certainly has not offered a real apology.  This is Brayden's 5th year at the school, buses have never been so unreliable.  Oh the stress.

Monday, September 8, 2014

No sleep in the sleep clinic

Taking Brayden to the sleep clinic.  For several months, he has been snoring like an old man (perhaps like one of his great-grandpas).  We have been watching and monitoring his sleep at home.  His oxygen dips down a bit and his heart rate is high for being asleep.  At first I thought it could be seizure related so we changed the meds but that made no difference in the lack of quality sleep.

Off to a sleep clinic, probably not the best idea to do it right when school is starting since he is not in the best of moods.  Well today took the cake...

He fell asleep in the car.  As any parent knows that a child falling asleep in the car can be a horrible thing when you have to wake them upon arrival.  I had to wake him.

He started screaming the moment we entered the building.  We enter the sleep clinic, a quiet serene place, soft spa music playing, the woman at the front desk had a soft whisper of a voice...and Brayden is SCREAMING.  A full tempertantrum was happening and it was not pretty.

I attempted to complete the new patient paper work but I could barely concentrate.  I tossed the paper work at the front desk and tried to explain over his screams that I am not sure we could do the appointment.  I explained that I would try to walk him around outside in hopes he would calm down.

This tempertantrum was horrible.  Screaming, slamming his fists down.  He was kicking his legs out of his wheelchair and throwing his head out of the head rest.

I hurried outside and tried to push him around, in hopes that would help him.  Then I tried to talk to him.  I figure if he knows enough to have a tempertantrum like this then he can have a strern talking to.  I spin him around in his wheelchair to face me, "Brayden Nathan, you need to calm down right now!  Stop kicking your legs out, it needs to be all done."  As I am talking to him very sternly, the soft-whisper lady appears...hearing me lecture my child in a wheelchair in a parking lot, who is barely in a wheelchair at this point (head and legs out) and I am trying to strap him his legs down in attempt to keep him in.  In my hurry to leave the office, I left the insurance cards and she didn't want me to leave with out them.

I am pretty sure she put a "special" sticker on our file...perhaps to signal "crazy mom".

Brayden finally calmed down (30 min after our appt time) to a tolerable decible.  We attempted to go in the office again.  He protested but not for too long.

We talked to the doctor, answered a lot of questions.  Basically, he needs to do a sleep study in a couple of weeks in hopes that could give us some answers.

He had a sleep study several years ago and had his tonsils and adenoids removed.  So we could be looking at putting him on CPAP at night...

Friday, September 5, 2014

He wasn't faking...

Brayden seemed miserable at school yesterday.  This usually means he just does not want to be there (or he needs to have a good poop).  Brought him home from school, he was doing alright; in the evening he did his deed in the diaper, had a shower, nighttime meds and dozed off to sleep.

About 3:45 a.m. I sprang out of my bed, down a flight of steps to Brayden's room because I was awakened (some how after being a mom, you never sleep deep again) by his violent cough/gag that turns into vomiting.  I sat him up to help.  Wow, his body was so hot to the touch.  His vomit/gag thing kept happening, he seemed to be seizing and having trouble with breathing.

I attached him to the stomach suction machine, hoping that would minimize the vomit.  Jeremy came down because he heard the commotion.  Take his temperature and it was 103.8.  Worked on getting him some Tylenol and put him on the pulse ox monitor.  Heart rate was dancing/racing around 170 and his O2 at 90 (should be 100 percent).  Seizing, temperature and more, means sick.

Jeremy scooped him up for a shower in hopes it would help bring down him temperature.  The poor thing was trembling with chills.  Even in the shower he was miserable, labored breathing, seeming to still be seizing (although, like a boy he did pee in the shower).
After the shower, we decided to give him a Diastat to hopefully help get control of the seizure.

The monitor still did not look good.  His temp came down to around 102.  Then we brought out the oxygen to help with his breathing.
He could not get settled and could not find sleep.  I sat and watched him, trying to comfort him the best I could, for the next couple of hours till the nurse arrived.  The oxygen finally helped his breathing, the Diastat calmed the seizure and the Tylenol brought his fever down a little.  Then we gave him some ibuprofen and that brought it down to a low grade fever.  He finally fell asleep a few hours later.

So far today, he has been better.  Slight fever return but no significant seizures (can't count all those little ones) and his breathing is much better.

The major bummer is that he was supposed to go to Jill's House this weekend, Fri-Sun.  I am sad that he will miss his weekend there because he loves it so much and he has not been in a few months.

So he was faking it just to get out of school, he really was sick.

Thursday, September 4, 2014

Two days in a row is good, right?

Brayden's first two days of school went fantastic.  He was content and even compliant, seemed okay with school.  I thought he would be exhausted but he didn't even nap when he got home from school.

Then day 3 happened.  Today is a day with no nurse.  And today is the day he vomited (his normal type of vomit, not sick) all over himself and his bed, before 6 am.  As I was cleaning him up, I realized there was a smell...from the other end...more clean up required.

After the vomit spells, he was congested.  This happens when he has vomited while on his back, it can come shooting out his nose.  He usually sneezes a big sneeze and more clean up but he gets it out.

That sneeze did not happen till he and I where in the car on the way to school.  He had to handle it until I could get to the parking lot.  Cleaned him up and a bit more in his classroom.

And I left Brayden at school, only to get a call a couple hours later that Brayden had been miserable all morning, really miserable and the school nurse was checking on him.  It was decided for me to come pick him up.  I arrived to find him deep asleep in his classroom.

No way was anyone going to disturb him after the morning he had, so we let him be and I headed out to run errands only to come back in a little bit for school pick up time.

Tuesday, September 2, 2014

Start of School and Perhaps a little Denial

We have all been talking to Brayden about school.  Letting him know the day was coming...that he was going to be a big boy and behave at school.  Carter and Luke talked with him about it.  Jeremy and I talked with him about it.  His nurse and respite gal talked with him.  All of us hoping he would be happy (well maybe not happy, do not want to expect too much, so at least content) and ready to start school.

Last week, I got a message from Brayden's bus driver; she was with him last year and a couple of years ago.  She called to let me know Brayden was not on her route this year.  I thought, no big deal because they change them around every year but it was sweet of her to check.  She proceeded to tell me that her route was the same and Brayden was not on it so she wanted to make sure he was okay or if he switched schools.  She also called school transportation and found that he was not even on the list...they did not have him for bus transportation.

Brayden has been riding the bus for several years now, from our house to the same school.  Not sure how or why there was a mix up.  I called transportation and the school trying to sort it all out.  It seems as though many special ed kids were without a bus.  And most them, Brayden included, do not live near the school so the bus is important to get them to the school.

The assistant principal worked to find out info and get everyone set.  Brayden does not have bus transportation the first week of school, thus momma will be taking him and picking him up.  He should have a bus next week.  His days will be short because I need to pick him up early to get back to Waterford in time for Luke.

Brayden was ready this morning, we tried to tell him that he would ride with mommy to school and he would be starting school.  Having a bus ride would have really let him know but mom was the ride today.
Well we arrived and the little munchkin refused to open his eyes, perhaps trying to pretend he was not actually there...trying to deny the fact it was school time.  Once inside, he realized it was his time, the fussing started.  He was not thrilled with being there, summer time is his preference.  After lots of attention from the special ed ladies, he settled down.

Praying he does well and the transition going back is smooth (minus the transportation problem but we can handle that).  He will be tired and hopefully not too upset with me.

UPDATE:  Brayden did really well at school.  It did help that his day started in music class.  He even did the stander, without much protest.  It seems as though he put on his big boy pants today and decided to not fight it...although I am not sure he knows this is happening every day now...

Tuesday, August 26, 2014

Just Give him Music - at Ripley's

A quick day trip to Baltimore Inner Harbor to visit Ripley's Believe it or Not.

 Bripleys from Carrie Jenkins on Vimeo.

While the boys and their boys were looking at everything in sight, Brayden spent most of his time enjoying the kaleidoscope room - a room filled with lights, mirrors and loud music.  Then in another dance room that put your movement up on a screen.

Thursday, August 21, 2014

Brayden went a Bowlin' and He did like it, uh-huh

Why not try some bowling for Brayden?
The bowling alley in Leesburg is easier to accommodate Brayden.  They put up a little ramp to get up to bowling allies and gave Brayden a rack for him to push the ball.

Really not sure if he would be up for this.
And wouldn't you know it, he did great.  Watch his little hand give the ball a push, especially in the first clip.

Bbowling from Carrie Jenkins on Vimeo.

Brayden bowled an entire game, without complaint and trying to push it every time (and yes his brothers and some friends are bowling beside him).

See a lot of bowling in our future...

Wednesday, August 20, 2014

Running a 5K with Brayden

I signed Brayden and I up for a 5K, Sept 28 in the local town of Purcellville.

Let me be clear, I loathe running.  I will do just about any workout to avoid actual running.  I get board with running, my mind wanders, then I realize how slow I am going, pick up the pace again and then process starts all over.

However, Brayden loves to be pushed around in his chairs.  It is probably one of his favorite things to do (and he will let you know if he wants to be pushed more...usually in a not-so-nice way).  Jeremy found out about this inaugural race and talked with me about it...why not have a new goal?!

So I signed Brayden up to be a Captain.  He will be pushed by three Angels, myself and two friends.  We will have lots of friends and even two more captains, signing up to race with us.  And you can run with us too!  Send me a message if you are interested.

In the meantime I have been trying to work on my running skills.  Running with Brayden, running without Brayden, trying to increase speed, trying to increase distance.  There is a huge difference when trying to push Brayden.

Him - totally relaxed, enjoying the ride, perhaps catching a nap
Me - totally freaking out, trying to catch my breath and almost hoping for someone I know to come by and give us a ride home.
We are going to do the race and I am determined to do it well...oh and have fun.

Monday, August 11, 2014

Who doesn't want a little goat?!

A day trip to Great Country Farms.  Brayden enjoying the fresh air, kids all around.  The boys running around the farm with friends.

And Brayden makes his own friends.

Thursday, August 7, 2014 is time for the Dentist

Dentist and a haircut.  Two the worst things to do with Brayden.  Maybe he is used to all the doctors, test and needles because those do upset him but nothing like the dentist and haircut...those he puts up a fight.

So you can imagine how "excited" I get to take him to the dentist.

Time for a little cleaning, the tech gave him a taste of the toothpaste.  She let him toss around that taste in his mouth for a moment, enjoying it, before going in. 

He did better than I expected (and my bar is very low).  He did hold his head still, didn't kick.  There was a lot of fussing, as the tech realized and said "I think he may be cursing me out".  The fussing turned in to gagging but amazingly the gagging didn't turn in to vomiting.  He settled down on his own after she finished, which is a big boy accomplishment for him to settle himself down quickly.  She actually cleaned his teeth and got a decent look at them.

Then the dentist came in for a look, Brayden was not having it but did hold still.

He teeth look good, no problems, one of the few benefits of not eating or drinking anything by mouth.  Evidence of some grinding, probably due to the fact that some of his old seizures involved teeth grinding.  And he has a couple of new teeth coming in.

Tuesday, August 5, 2014

The Sweetness of Friendship

A surprise visitor came out to the country, all the way from the city, just to drop off a birthday gift for me.  Not only is it a bit of a drive, then not knowing if we would be home and loading in the kids for the ride.

The Pfaff family has become so close to our hearts.  A friendship truly given by God, given for support, unconditional love and lots of laughter.
Such a sweet birthday surprise, so we attempted a picture of all the boys...not bad for boys and two that are blind.

Saturday, July 12, 2014

He does a Cabana and a Nap

Jeremy rented a cabana several times during the week, right by the ocean, right by the pool.  Plenty of shade for Brayden and a giant place to relax.  Of course the boys (including Jeremy) liked it because it came with a concierge to bring drinks and food.
Only question was, who was coming to be the one to move Brayden...cause he was not going to be happy to leave this spot.

The resort was wonderfully accessible, ramps and paths to get to everything.
It truly was one of best family trips we had, mostly due to the fact that Brayden did really well and had no problem finding sleep when he needed it.

Friday, July 11, 2014

He does the Beach

After much (too much) research on the perfect family vacation spot, we decided on Hilton Head.  We had to surrender the idea of renting a house on the beach any more...trying to find an accessible house, with accessible access to the beach, and not a house of 12 bedrooms (since we only need 2-3), proved to be a impossible task so we looked at resorts.

We found a Marriott resort in Hilton Head but is was 10 hours drive.  We haven't tried that long of trip with Brayden in several years.  In fact we did go to Hilton Head several years ago and Brayden was not a fan, we spent many hours rotating the person who would walk the property pushing Brayden, just to keep him from crying.

So we loaded the car and all of Brayden's gear.  The road trip went smooth (had to make a quick stop on 95 to pick up Carter and Luke from their trip to Myrtle Beach).  It was smooth until that last bit, as most beach goers know.  All of the beach traffic, with huge thunderstorms and close but so far.  Then came the noise, an explosive noise.  No we did not blow a tire, Brayden blew his diaper; even the boys begged us to stop and take care of it.  We had to find a place to pull over and pray for a break in the storms.

All was clean and we finally made it.

It was one of our best family vacations, the place was very accessible and Brayden enjoyed every bit of it.

First time really taking him out in the ocean, and he did great!  But we had to ease him in with a start sitting on the boogie board.

 Oh how happy it makes us to see him so content and comfortable!