School 'n Crap

I need to write my feelings and thoughts down NOW.

I am getting quite impatient when it comes to school.  In my head I gave Dezh's KY school a hard time for being so strict and following protocol so closely that it all drove me a little crazy, but now being at a new school in a new state I am realizing how VERY good we had it there with our on-the-ball school and staff.

Here is what is happening/has happened:

We moved to our new state in mid June and I called her new school and school district at the end of June with hopes that I could bring in her IEP so they could get prepared.  No one answered because it was summer.

I called again at the beginning of July and the school told me to call the district.  The district said not to worry about any of it until school registration on August 19th, which was about 1 week before school started.  That didn't sit right with me.  I called back a couple days later and asked to talk with special ed.  They said I could bring the IEP in.

We took it in around mid July.  We even got to meet with the head Spec Ed consultant right then.  They made multiple copies of her IEP for the district and the principal of her school.  I was getting excited that they were going to start working on her case to get everything ready for her to start school.  During our impromptu meeting with her we asked if Dezh's rescue med would be allowed in the school (KY didn't allow it) and she said, with a wave of her hand, that it would be fine and that several other kids were using it too!  I was SO grateful to hear that.

However, by the beginning of August I hadn't heard anything about an IEP meeting.  I called the Spec Ed consultant aid to ask about it and she said it would happen later.

I called again before registration to be sure everything was on track and that we were registering on the right day in the right place and to remind them about the IEP meeting.  They said that all was well.

I filled out all the registration paperwork ahead of time and Curtis did the actual registration.  He was first in line and it went well except that we didn't have a record of her immunizations.  But we got her KY doctors to fax her immunizations in to the school office by the next day or so.

I called the Spec Ed consultant a couple days after registration to find out if we were having an IEP meeting before school started.  She didn't remember much about our case or that we had already met.  When I explained it she said that we should have a meeting and said she would call me back with a day and time.  The meeting was on Friday morning, just a few days before school was to start.  I was really glad to be having a meeting and was looking forward to meeting teachers and staff to get everything in place!

Thursday night we went to a sort of "back to school night" open house to meet her teacher (who we will call Teacher A) in her classroom at her school (which we will call School A).  I went up to the teacher and introduced myself.  We shook hands and the first thing out of the teacher's mouth, post greeting, was, "Are you sure this is the right placement for Dez (she kept saying Dezh's name wrong... not that I can really blame her for that, many people to screw it up)?  Have you been made aware of all your options?  Have you considered all of your options?  Are you sure this is the right placement for her?"  I kid you not, that was nearly word-for-word what she said to me.  I told her that this is where I wanted Dezh to be and that it worked out really well for Dezh during her kindergarten year to be in a
"normal" class and then be pulled out for resource room and therapies and breaks.  Side note:  we noticed her room, at 6:15 pm, was scorching hot, like around 80F!  Bad news for Dezh.

Friday morning I went, slightly nervously, to the meeting with the district people at School A.  They were all welcoming and punctual.  As we began the meeting the first topic was whether Dezh could handle the heat at School A.  It was only 8:30 AM and was already very warm, perhaps 76-78F!  They said that the room we were meeting in was the coolest room in the school.  They also said, that Teacher A's room was one of the warmest and least predictable temp-wise year round because it was next to the boiler room.  This is an old school and they are currently getting a new one built but it won't be finished until next year.  I asked if they could get a wall or window unit and they all agreed with each other that a window unit it wouldn't be able to cool the whole room and a wall unit would not work with the wiring.  So...... ya.  They said that they would like to give us the option to go to a different school that has AC.  I nearly broke down in tears over this because it seemed that everything was already so unprepared and now 4 days before school was to start we were asked if we wanted to change schools!  I don't really feel like we actually had a choice.  They weren't willing to do much to cool the classrooms but were very happy to have us move to another school.  I told them that I was feeling upset about the idea of switching at the last second and that I knew that School A was ranked as one of the best schools in our new state.  I said I would have to think about it but that it seemed like the only healthy option.

After I said we would likely switch to School B, they reintroduced me to 2 members of the meeting.  The teacher to my left would be her new teacher (Teacher B).  School B's principal was also there.  We all talked about Dezh and her medical, social, therapeutic, and academic needs.  I showed some seizure videos and her medication.  The rest of the meeting went fine.  I noted in my mind during the meeting that Teacher B had been taking notes throughout the entire meeting, even before she knew that we would most likely have to go to School B, while Teacher A didn't write one word even though she had a pen and paper on her lap.  I found that interesting.

Also, during the meeting we talked about Dezh needing a one-on-one aide.  They re-introduced me to a certified CNA who would be Dezh's aide for at least part of the day.  I asked if we could have her for the whole day and they later agreed.  I talked to the aide after the meeting and she told me that she had taken the intranasal versed rescue med training course twice and had worked with another student with a severe form of epilepsy before!  I REALLY like this aide.  She is smart and kind.

After the meeting we went over to School B to check out the temp and see Teacher B's classroom.  I was really impressed with the school, air temp, and that teacher!

That afternoon I informed the Spec Ed consultant that we would indeed be willing to switch to School B.  I also let them know that we wouldn't be attending school on Tuesday, the first day because of a neurology appt.  Turns out the appointment was on Wednesday so I emailed the teacher to let her know that we would miss the second day of school as well.

Thursday morning, Dezh's first day, we arrived at school about 20 minutes early so we could put her supplies in the class and make sure everyone was ready.  They didn't let anyone in the doors until 8:50, just 10 minutes before school was to start.  We saw Teacher B on her way out the door to be a yard duty.  She stopped us and said that she put Dezh's desk in the back of the class because she didn't know how much stuff Dezh would have around her and knew that she would also have the aide next to her.  I said that that sounded great.  The principal escorted us down to her classroom.  On the way to the room, the principal said, "So, Teacher B already has about 27 students in her class and the other first grade teacher only has 26, so we were thinking about switching Dezh to the other teacher's class".  I could NOT believe that they were actually thinking about switching us AGAIN!  I told him that I didn't like the idea of having a new teacher that we'd never met and that they had had plenty of time to switch another student around over the weekend.  He said that they didn't find out that we were for sure switching schools on Friday (which may be accurate).  So I said that they could have switched another student on Tuesday morning before the day had even started and before another kid had time to get attached to Teacher B or her class.  The principal folded his arms and continued walking down the hall.  I am not too sure that he appreciated my bluntness.  I in NO way want to make enemies with anyone at the district but I DO want to make sure Dezh gets lots of help and education.

When we got into the classroom I noticed one desk in the back of the classroom all by itself.  I asked which desk was for Dezh.  The principal thought it was that little secluded desk all the way in the back.  Then he said that he would go do bus duty for Teacher B so that she could come in and get us settled.  5 or 10 min passed and no one showed up.  I told Curtis that that desk in the back by itself couldn't possibly be the one that was meant for Dezh.  I thought that on the back row or corner would be fine but by herself in the back seemed terrible!  When Teacher B came back in the classroom from being a yard or bus duty (principal never switched her out), I asked which desk was for Dezh and she pointed to the small, secluded one!  :(  I expressed that I didn't like that idea because it was like putting the retarded kid in the back of the classroom away from all the "normal" kids.  Teacher B said that she had had that same thought but didn't know how much stuff Dezh would need around her or how close her aide would need to sit to her, but that she needed to rearrange the desks any way so she would try to fix it. (Sure enough, the next day the desks were rearranged and Dezh was on the corner of the back row!)

Dezh is doing great with her aide but she is having a really hard time getting used to school again.  The first day of school her aide said she would just plop on the ground and look up at the ceiling and refuse to move until the aide promised to reward good behavior.  The second day was much better.  She liked school and didn't throw her little plop-down tantrums.

The third day of school, which was today, was worse/different than the other two.  The aide said she was really thirsty all day but didn't pee even once!  NO bowel movements what-so-ever.  Now on top of worrying about crappy school crap and her delays and seizures I get to worry for the rest of the day about what ever must be causing her to not pee!  Yikes.  Erg.  Ugh.  :/ .

Today as I was picking her up from school, I noticed that I was getting a call from her district.  I had to let it go to voicemail.  The voicemail was from our new Spec Ed consultant who is assigned to School B.  The voicemail said that they wanted to have a meeting tomorrow or Wednesday about getting Dezh some more "interventions".  I called her back and she said the same thing she'd said on the vm and then asked  when I could do the meeting.  I said either works great for me so we decided on Tues (tomorrow) after school.  She was about to hang up with me when I asked exactly what "more interventions" she was thinking about.  I didn't want to go into another meeting with a surprise attack like switching schools that nearly brought me to tears.  She said that they (school, district, teachers, aide, staff???) felt that we need to do something different with Dezh because she is being resistant to going into her classroom and resistant to doing her work.  She also said Teacher B just doesn't know what to do about it.  Her saving grace during this little phone call was that she said, "Maybe you can give us some insight on what we can do to make things run more smoothly".  I bet if my insights don't work out for them that they are planning on asking if we will move her to an all special needs class or the autism school!  >:(

Let me just tell you something:  Dezh is basically autistic, in fact, she is so "autistic-like" that her neurologist is making us an appt to get her evaluated by a neuro psychologist really soon.  Anyway, she does NOT handle changes of any type well.  We have to show her snippets of a movie ten or twenty times before she decides it might be ok to watch.  She has been going to our new church for nearly 3 months now and still is adjusting.  Dezh has been at this NEW school, with NEW teachers, NEW aides, and NEW friends for 3 (three, I repeat 3) DAYS!  That is most certainly not enough time for her to adjust to almost ANYTHING!  So.. tomorrow should be interesting.

OH, good news:  She just peed     and     peed      and      peed!


Don't be fooled by the smile.  She cried and fought us on wearing this costume.  We had a lot of tears last year too.  I think she might be afraid of costmes... or maybe just too mature for Halloween.  After trying the mario costume, we went with a tutu and fairy wings, but the wings were also unacceptable so, finally, we left the house with just the tutu!  Silly girl... gotta love her!!!


First Day of School!!!
Dezh LOVES kindergarten!  She loves her new school, her teacher, her aide, her friends, her science class.  She loves it all.  I think she also enjoys being there ALL day.  That's right this is a full-time kindergarten.  When I went to kindergarten it was only half a day but Dezh goes from 8:25 am - 3:15 pm!  That is a long time to tire out this poor kid, but she is SO happy!
Last year she would beg for more school when I would pick her up so I think she is pleased that she gets to spend most of the day with other kids doing awesome stuff.
 She got to see a turtle, fish, hamster/gerbil thing.  She rode a little sitting scooter in P.E. class.  She goes to Spanish class.  Her aide tells me that

Dezh's Ipad

We have been very blessed because of the people around us.  Last Sunday during the semi-anual General Conference of my church, one guy gave a talk that described so many of the people Curtis and I have in our lives.  He said that when we have friends in need of help, instead of saying, "hey, let me know if I can do something for you" we should just do what we can for them... just jump in and help.  We are fortunate to have a lot of friends like this.  Some friends babysit for us,  one invites us over for dinner regularly, they also come hang out with us and keep us company or make sure we are doing alright.  We constantly have good support, but recently we had a great surprise.
I went to the mail box a few weeks ago and pulled out a cute card and started to read.  It was from friends of ours who said that they hadn't been around when we were trying to get a Jett  and they would have liked to help but because he was paid for thought they would give us a nice sum of money to help us out in other areas!

Naturally we debated whether we would even accept the money because it was a large amount but we were very grateful for their help and love.  When we grow up (in a billion years) and we have some money (in 5 billion years) we are going to want to help other people in difficult circumstances and we will certainly hope they will cash our check!  Perhaps that was just our justification for our greed, I don't know.  Anyway, we cashed it!

We have been wanting to buy an Ipad for Dezh for a long time.  Ipad's have amazing apps that have provided miracles like communication and improved cognitive function for several children in Dravet Syndrome and Autism families we know.  We just haven't had the extra $$ it would take to get an ipad until this lovely little check fell into our hands.

Dezh's happy place:  ipad + therapy swing!

So NOW the ipad is purchased along with an awesome protective cover, a case that can bounce (although I won't purposely try this), and a lot of apps of course!  Dezh has been playing on the ipad now for about a month and it has been one of the most miracley, stress-relieving blessings in our lives.  Check it out:

Dezh has learned:

  • lower case letters
  • numbers
  • animals like iguana, camel, donkey
  • has memorized a ton of movie lines which she uses in phrases to communicate to us!
  • how to navigate around the ipad; for example she will turn on one of her favorite songs like "jingle bells".  Then she exits the music app while the music is still playing so she can listen while she plays other games like her fishing game.
  • to play the game memory.  Curtis said it is the most cognitively advanced thing he has ever seen her do!  She really can complete an entire game of memory with 4 or 5 matches!  That's 8 or 10 cards to remember!  It is really amazing and makes us so happy to see this!

Other Dezhy improvements we have seen are:
  • more clearly understood speech.  She now has more words (more than just animal names) and she pronounces them more clearly.
  • longer sentences.  She is consistently stringing more words together.  My favorite new phrase (which she often uses accurately) is "I don't care".  It is so funny!
  • better concentration and focus in general
  • on days when she is really worn out, sick, has seizures, is looking for sensory input in dangerous ways, or when she is grumpy or violent we can use the ipad to calm her down or refocus her.
  • a better understanding of what we are asking or telling her and even what Curtis and I are talking about (which means we are watching what we say more closely now!!).
  • better eating!  She has actually gained some weight and I can no longer see her ribs all the time.  She still has days where she is totally incapable of focusing or struggles to focus.  This can affect(is that the right word: affect, effect??) her eating.  Without the ipad, on days like this, we have to spoon feed our nearly5 year old while physically holding her in her seat.  But if we bust out the ipad she will intently watch a show and feed her self without even realizing it!  Thank goodness she has good eating days too where we get to "talk" as a family during dinner.  That was something I loved about my family growing up and I am glad that our little family can experience it too.

The selfish stuff about the ipad that Curtis and I really enjoy:
  • If she doesn't take a nap, we can lay her in her bed and put on a movie for her.  That way she is resting and we know she is safe because we can see her on the video monitor.  Then we can have a rest or get stuff accomplished.
  • A few times we have been able to sleep in (what parent ever gets to do that??) because we give her the ipad and she plays and plays in her room while we sleep with her monitor next to our heads listening for a seizure.
  • It helps keep her sitting (and she never wants to hold still) at places like Dr's appointments or church. We actually get to listen to what the doctors say and to the lessons at church!

I am sure it sounds like we use the ipad for EVERYTHING in EVERY situation!  We certainly use it a lot.  We use it nearly everyday.  Judge us if you must.  But we try to find a good balance between utilizing the ipad for entertainment and education and distraction(ie: parental relief).  She also uses her creativity and imagination while playing with other toys, coloring, cooking, reading, and playing outside when it's the right temperature.  She also goes to school everyday without the ipad (although there are great uses for ipads in schools).  And she loves to be really physical like running, swinging, climbing, sweeping, throwing balls around the "yard", throwing rocks into puddles, playing basketball (her version of basketball), swimming, etc...

We would really like to thank the wonderful friends who gave us this gift.  It was really heaven sent and we are so grateful.  I would love to find a way to repay them.  I'm open for ideas!  This really is an immense blessing that has taught our daughter so much in a few short weeks.  I think it has also given Curtis and I glimpses of Dezh's capabilities which are great!  Thank you.  We love you.

Another Dravet kid died this week.  It scares me.  He was in a coma for several months and came out of it briefly.  I don't know anything else about what happened.  It feels like a family member died.  But I do know that he was beautiful and sweet and his parents are totally broken hearted but have a lot of faith and know that they will see him again someday.


Dezh has been singing WITH me a bit lately.  For instance she asked me to sing "sunshine" a couple days ago.  It's the song "you are my sunshine".  She actually said/sang about every 10th word with me.  It was so cute and wonderful.  I was so happy to realize that her sweet little brain is functioning at a faster pace than it sometimes appears to be.  On top of that she was actually hitting some of the notes right on key!  Go Dezh!!