Tuesday, September 30, 2014

So glad it wasn't me they were talking to...

Just so glad these random conversations Andrew has more often than he would like to admit. don't happen that often to me, because the response would have been different.  I would have asked him to pray for us.
Anyways Andrew was in a car with a guy that came from church.
(Men's activities are pretty common he has become friends with some of the greatest couples from our sunday school class this way.)
pretty great guy that I've actually met  his wife on several occasions.  They got to talking and the guy was talking about how much he loved our school district.  He was talking about how he could pick any school he wanted his kids to go to because I guess he got  seriously lucky.  He was beaming so much about it. My husband decided just to be very happy for him and decided to say nothing, and changed the subject. 
This guy could be a lot of people we know. so no nasty emails saying it was you and how we are slandering anyone. This isn't pointing anyone out and there is no object lesson here.  This person remains nameless for a reason. They are considered to be members of our family and we absolutely love them.
In our time here a lot of the people we've run into have said nothing but very positive, nothing but glowing things about our school district.  I have also run into a very small amount of people who've experienced the worst stuff because of the school district.  The difference between the two is whether children receive special education services.

Our Two boys are in a very special predicament though.  One has a rare genetic condition and the other one is still undiagnosed... all we can do is fight for the things we can tell that they need, and  find the specialists who can run the tests or look at our kids thoroughly enough to get us into the NIH Undiagnosed diseases clinic.  I've discovered some kids may outwardly appear normal can have the biggest challenge of getting help especially for speech and language and fine motor. But the more I talk to parents of rare or undiagnosed kids, the more I find this is totally a normal thing. Sad, but totally true.


All I can say is when I run into someone who's happy and having a super experience with their kids, I'm jealous, and I am happy for them. I  know they have their own challenges but mostly have kids that don't require as much help.
I wish I could pick any school to send my kids to but us normal earthlings have to stick with our  assigned school zones.  If I want to change their school we'd either need to move or apply for a transfer in their one month transfer window and get approved. I'd totally pick the brand new school in Viridian, (Brand new school in an upscale community with custom homes...) but we decided that this year we would stay with our assigned school more than 3 miles away. We decided not to disrupt Daniel's happy world and besides we know the staff.  We'd rather deal with demons that we know versus an unknown devil that could be worse.  Yes, we know to not do things out of fear, but it is more or less the only thing we can do right now short of winning the lottery and moving to Southlake or Grapevine,Texas.
In our school district nothing will mess up your normal zoning rules of going to the nearest neighborhood school other than living in an apartment complex.  The last school we were assigned to was 10 miles away because of this. SO glad we moved a year ago for other reasons. The one we are assigned to now is a little more than 3 miles.  I pass 2 schools every afternoon...and a 3rd one isn't that far away either.  BTW I pass Bellaire, and Harrison Lane.  Stonegate isn't much further away.

There are several things that if  you know me you know how I feel.

1. We want to totally LOVE  our schools, our teachers and the staff at our schools.
2. we are pretty much big supporters of teachers, and big fans of the teachers we've had. 
3. We want to be partners in our kids education, not just drop them off, and hope for the best.
4a. We really despise people who have the responsibility of doing what's in our kids best interest as their paid profession but DON'T because it's easier not to.
4b. I really don't enjoy being their on-call rescue team.  Especially when I know they have resources available to help prevent some of the issues.sorry but calling me is not a very good intervention plan. It sends the wrong message that if I act bad enough mom will come get me and take me away from a place I hate...instead of actually teaching my kid that acting out is unacceptable and I need a cool down/ change of environment.
5. I have several friends who really want us to hire an educational attorney and take the school to due process and/ or file an Office of Civil Rights complaint due to several violations of our children's rights, including the use of seclusion and violations of the process of obtaining special education services in which the school would rather take my doctor's word over the parents; leaving us as parents having to recruit our doctors to do our advocating.  Our doctors and specialists don't want to get involved or talk to the schools because it messes with doctor/patient relationship.  We totally agree.
We have no ill will against anyone and only want to do what's in our children's best interest. Even if it means bringing other people in to help us get what they need.

What we are up to  right now....
Waiting on genetics appointment in February 4th... We just did some testing on Daniel and it came back normal.I really think that they didn't test for enough.  We are on a waiting list for the soonest available appointment.    We'd like to go to Baylor's undiagnosed diseases clinic and try to find an answer just so we can plan for the future if nothing else.
We are also about to start a Positive Parenting class called PPP Parenting. Our developmental pediatrician got us in so we can learn some more strategies. Starts this week.

Researching the best options in schooling for Jonathan.He's a very smart kid who's into science and social studies but struggles in language arts and math because of his  issues with speech and muscle tone.  He can now type at two words a minute. so assistive technology can't help.
We are looking into alternatives to public schools... This school district is not very good.  The only reservation I have is that right now I would totally lose all of my patience, because somehow he gets an attitude just because of frustration.
What I didn't know until a few weeks ago was that he's been the target of a few bullies AGAIN. Sigh. Third grade boys I can totally do without.  The whole experience with bullies has turned me off of wanting to do extra -curricular. at least with these kids. It's also left Jonathan a little bit emotionally scarred.  He wants to be friends with everyone that will let him. He doesn't care  who they are or how different they are from him.

Thinking about Preschool for Sarah as we are nearly Potty trained.  Watch I jinx this with the potty training..we are pretty confident she won't qualify for the one our school has. We are doing extremely well at Andrew's work...for the first time ever we are doing better than we ever have financially. Andrew's last raise put us out of contention for  the school's pre-k program...We'll figure it out but if you are local to me and have ideas and even if you are homeschooling I'd be open to it. She's already pre reading. Please contact me on Facebook.

I am attending seminars and watching conferences online to learn more about dealing with doctors and the schools.I am also researching my next steps in terms of completing my education.  Whether it's completing another degree or starting in another direction, altogether.
Just be blessed.

Trina






Tuesday, September 9, 2014

Time

We had lunch with Daniel last Thursday. It was awesome. All he wanted was a chocolate doughnut.if you remember cafeteria food from back in the day you were in school...the food it's much worse.

Monday, September 8, 2014

First day of school 2014

Here is Jonathan and Daniel on their first day of third grade and kindergarten (we got a do over).

This is real life

This is real life. We're not in a movie that's scripted. I'm sorry but I am not a hollywood movie star.
Life can get so hard, but I am glad we are in God's hands, and not just left here to fend for ourselves.
About a month and change ago I took Daniel for a follow up visit to his developmental pediatrician. after telling her about our many No Good, Horrible, just plain old bad days we've had at school... It seemed more like a long series of unfortunate events,. She   suggested that we go ahead and put him on medication.  but first we needed to get an EKG to see if his heart was okay to go on the medication.
Okay, if you know me..You can relax.I am not a proponent of putting little kids on medication.  In fact I'm rather very conservative and need  fifty reasons to consider it and I need a pro and con sheet etc.  This is especially true with my kids.
We went and got the EKG done at the children's hospital.  He was so freaked out that he peed himself on the table and all they did was put stickers on him.
We went home and waited.  Later that week we got a phone call saying that there was an abnormality on the test.  we needed another test and a visit with the cardiologist.
At first at hearing this both Andrew and I were totally freaking out, but then I had a sense of total peace.  I could not understand why it was there, but honestly after everything my kids have gone through, anytime peace shows up I'll take it.  I told Andrew and suddenly he felt peace about it too.
We had to wait 2 weeks to go get the other test. We waited until the 14th and went to the cardiology place.
Next time I'll just let Andrew take Daniel because Sarah is very impatient and has no manners when it comes to waiting rooms.  That and their NICU model room gave me flashbacks all the way back to Jonathan...
Waiting is the worst.
Andrew and Daniel come out and we were pronounced healthy. I felt so relieved I cried.  Andrew went phew we dodged that bullet.  The doctor couldn't find anything wrong structurally with  his heart.
Since school was starting, we were in the mad scramble mode to get ready like we always are.

Add in a schedule change for Andrew.  He is now working Sun through Wed. 6 am to 4:30pm.  Yep, he is working Days and he is feeling more rested than he had been in a while.  Having 3 kids and working anything other than days is not a good mix.  one's sleep will always be broken, Being that  because your house has a certain level of noise that cannot be avoided.

So this last week we called the doctor that wanted the first test and said we got cleared, here's the doc we talked to... Can we start the medication.

I'm not about to list all of our reasons, but let's just say we thought about all of it carefully and prayed about it and decided to try this medication, so that Daniel can have at least a better chance at being calmer through the day and have a chance of not ending up in the office with the school calling me every 30 mins so that I can rescue them from him, (yes I know they were treading the thin line  between following and breaking federal laws regarding kids and special education)  sign us up.
We started on Sunday and won't know if it is going to work for a week or two...
 we are just way too thankful that so far we are having great days at school although Daniel has only had on serious incident (which  the teacher under told me verbally but in writing it was far more serious.)... Yay they are creating paper over this stuff.
So Be blessed while you can in every circumstance.