The Hoover family, The Darsey Family and Michelle and her daughter and Cindy Hahn from Texas NF Foundation

I know a Fighter. His name is Jonathan, and he is a super hero in my book.  He has  Neurofibromatosis type 1.  Go Here for  more info on NF.

But Even Super Heroes keep their pain concealed.  Yesterday, I went to have lunch with him as a special treat for him.  I just came out and asked him if he was in pain.  He said yes.  I asked him when this started hurting he said that it was all the time and especially at school when his class is playing kickball, soccer  and the kids are way beyond his ability in the way they play.

Now, this year he has a card that says Need a break.  He can use this at any time, although he hasn't because he felt that he was going to be punished for using it too much, and that he felt that would open himself up to bullies.  By punished he meant he was going to be sent to the office, and suspended and sent to the alternative school kind of punished.  I encouraged him to use his cards so his body can not hurt so much.  

I will now be getting him seen back at the NF Clinic because of this revelation. Don't know and can't promise that the pain will go away.  There currently is no treatment for NF and definitely no cure.  That's why research done by The Children's Tumor Foundation is so vitally important.  So is getting support and advocacy while we learn of what Jonathan's NF is morphing into, and what his current needs are.  There are a lot school issues with learning disabilities and attention issues that we are battling with associated with his NF.  This is very common for NF.

This weekend we went to Texas NF Family Camp in Burton, Texas at Camp For all.  This was a crazy great opportunity for our family to learn more about NF, meet other families with this, and get support and make some friends with some of the biggest Warrior moms, who quite frankly have been to hell and back many times dragging the devil back behind their cars on the freeway, home from the schools, hospitals and clinic appointments.

4 Things  Jonathan and I  learned.

1.We are  now not ever alone in living with his NF.  This had me crying on the way back home from camp.  it was crazy bittersweet.  We had never met anyone with NF... so we had a lot of questions.  Thank you to those who  put up with our questions.  I didn't know NF can be progressive.

2. He met a bunch of adults that have NF and they aren't afraid to talk about NF.  In fact he met a few that go and advocate for NF and talk to a lot of people.  Reggie Bibbs is definitely in his top 3 for heroes.... and top 2 for me.  This also did take our fears and put them to rest.  

3. Friends are easier to make when the fear of being judged for what his abilities are or aren't , are removed.  He made several friends and we are going to make sure  he has every opportunity  to grow these friendships. I also can't wait for the next event to get to know more of the local families.

4. Fears are better faced as a family and as a group.  This was never so obvious to me  as when we went to the Giant swing.... The first picture there is a rope attached to  the harness which is attached to the swing.  It's safe.  But when they want to get pulled back other people go and hold it like they're playing tug o war.... this was also very obvious at the zip line tower and at horse back riding.  And if anyone wants to know EVERYONE in my group including me  rode a horse. I may have had a couple of panic attacks trying to get on the horse but eventually it was awesome. Kudos to the guy who led me on the trail. and let Sarah ride backwards on a horse.

Be very Blessed, Trina

A very California Family wedding.Trip of a lifetime.

I'm sorry that it's taken me  a month since Jonathan and I went on a trip to California.
I hadn't been to California in so long to visit family that I cannot even guess the year we went.  I'm guessing 2004 (on the very outside it could have been 2003).
The last time we were in California a friend of ours named Alfonso was getting married.

After a while of constantly dealing with the ongoing drama with Daniel's school, and just life in general wit a new set of Autism spectrum disorder diagnoses for not only Daniel but Jonathan as well... Andrew made the executive decision to send both Jonathan and I out to visit our family. I needed a break.. There was a very special person in my life that was also getting married.
My niece, Riyen got married to an awesome guy named Garth. They had known each other for a long time...
That and she's almost 23.  Kinda doesn't feel that way.  It seems like yesterday that she cried at my wedding.  like. Ugly cry. but only because she was happy. (but as a disclaimer all the women in my family cry at everything). I cried at the last school assembly I went to with Jonathan.

Jonathan playing in the same backyard I practically grew up in. Couldn't get him inside even when it was freezing.

Jonathan seeing and experiencing the ocean for the first time.  And loving it.

Ended up soaked from head to toe but it was TOTALLY worth it.

My Good friend Darlene... whom I love very much.

 We spent the morning with Andrew's side of the family.  We took over a whole corner of a Diner in Watsonville. 

Pictured  from L to R (because I totally hate looking at people's photos not knowing who I'm looking at)

Me, Diana (Andrew's sister,Roslyn (Brother Walter's Significant other) Becky (Andrew's Mom) and Walter (Andrew's Brother)... Most of THESE pictures were taken by Jonathan.

Andrew's Dad named David (grandpa) and Diana.

Roslyn's daughter and our niece Brooke (Jonathan's Cousin)

Lee (our niece and Jonathan's cousin)

Diana... whom if you took a poll at my house they want her to visit way more. or we may have to go see her... hmmm

Jonathan looks good dressed up for the wedding.  Too bad it was slightly above freezing.  At least it wasn't raining.

 

There was a playground at the park Riyen got married at.  Christmas hill park is also home to the world famous Gilroy Garlic festival.

Bored because  Cousin Ruben made us leave at 1 pm and the wedding was at 3:30.  Cold because when we left Texas it was 70... and here we were freezing because it was 40.  Totally had forgotten about winter in California. like totally.

 Time for a beautiful wedding.

don't know anyone else here besides Emma (my niece and Jonathan's Cousin) in the yellowish gold dress and the Bride Riyen.  Love everyone's expressions.  Priceless.

You may kiss your wife Garth,

Cutting the cake but notice Jonathan is in the picture.  My sister and Riyen's Mom Eryn, That is an entire post I can't wait to share.  Friend Sally and my Aunt Diane is in this picture.

The day after the wedding we went to San Juan Bautista and walked around the Mission... Found out my aunt and uncle were married there.

Pretending to be a civil war re enactor... because they do that there some week ends.

My Aunt Diane who means the world to us and my Sister Eryn.  So glad I got to spend some quality time with you both.  Thank you for your love and warm hospitality. We stayed at my aunt's house.

At the airport in Oakland after driving for 2 hours from Hollister, California.

During this trip I really got a chance to reconnect with Jonathan.  He's a really great kid who sometimes tries too hard to please everyone.  He's sweet and he has a great sense of humor.  He is also a super Google Navigator.  Next time we go ANYWHERE I'm giving him the phone and say get us there.

He also sleeps sideways and loves playing in a backyard.

I totally needed this trip not only to go to this wedding, but for the break it forced me to take. 

Upon returning it took me about a week to fully realize that the filter that I had been viewing life with my kids was gone.  Suddenly I was viewing life wit Daniel and Jonathan and Sarah in all of it's glory.  The Good, the bad and the UGLY.  Still beautiful, just like anyone else we have bad days.  A LOT of them.

What normally happens after a bad day is we debrief and evaluate what happened and what could have possibly triggered the bad day. we also put the day away and never speak of it again.

 The day after we got back was terrible and ended up with a panicked phone cal from school, saying come.

I'm just thankful I was able to be granted the break and eventually my filter came back, but it was slightly different.

We are still working the Individual Education Plan through the IDEA 2004 Process with the school.  We are by no means ever going to be done.  Our ARD meetings take all day and there is no more room in that conference room.  We now have to trust an advocate and a lawyer to do our advocating for our kids and that is the absolute hardest thing ever for me to do. It hurts.

He has so far since the start of school been restrained (with documentation) 6 times.  He has been secluded  0 times and suspended 0 times.  This is a big change we are grateful for.

 But Love wins out.

Be Blessed and have a Happy New Year

Christmas 2015

Merry Christmas from our family to yours.

Be blessed.  

Trina, Andrew,J,D and Sarah.

First Day of a new School year

Day 1: This is the beginning of another chapter. 

 Forget that. 

 I hope this is the beginning of a new book, because the last one was far too painful and ended in a way I hope to NEVER repeat.

Yesterday was the first day of school at a new school.  

This means there are new staff and new routines to learn.  Anything new can create chaos and anxiety for Daniel. 

Being at a new school also brings a sense of loss for both Daniel and Jonathan. Their friends aren't at their school with them any more. I pray they can find friends that they can play with and learn from. I just pray that Daniel gets the courage to go play with anyone.

The people that were most familiar with Daniel are gone and mostly for good reasons.  

All I can say right now is we hope they learned from Daniel how to treat students and we hope the laws regarding how adults treat children in schools change.

This is Jonathan's 4th school and Daniel's 3rd school and Daniel is in First grade in this district.  I wish This school district would not  move around their special education students so much.  The school district is causing some instability for the most vulnerable students... Let us put down some roots and bloom.

We are going to a school that is a wee bit closer to home but still a good distance away.

Here are our stats: 

Daniel started First grade... He has 2 teachers. Mrs. T. and Mrs. P.  He also has one speech therapist  who is also Mrs. P....We happen to have already known one of our teachers through church.

Honestly it felt awkward when I learned she was going to be his teacher. and then after talking to a mutual friend we all agreed that maybe this was God answering our prayers and that maybe she might be sensitive to know what his needs are and not hurt him.

He will split his time depending on  how he is doing behavior wise.

Sarah is still a year away from starting Kindergarten and we will be starting a home school curriculum for pre-k.

Friday: How has Daniel been this week? He's had several melt downs, potty accidents and has run away several times. This is pretty much mild Daniel at school.  Not too sure anyone really knows what they are doing, but since they are totally retesting him I cannot do anything but watch.  I have been told I can only give a history of what he's done and how the last school dealt with it.  I cannot and should not be trying to fix anything for the school.  I have to let them figure it out.  If it's still wrong when we go to our IEP/ARD meeting, then we're going to get someone to bust some chops.  

We would appreciate any and all prayer/thoughts for the year.

We had issues in the morning with how late the bus what getting to school.  The bus would come at 7:10-715 am and wouldn't get to school until nearly 8 am.  We will be addressing the bus issue and our compensatory (make-up) speech therapy issue that goes hand in hand... but until they fix this I will be at least taking them to school.

Until then Enjoy some first day pictures and be very blessed.

It is Finished... Sort of

Okay At the bottom will be some pictures.  Some people want their Hoover  dose.
School finished out May 29th for Jonathan.  He'll officially be in fourth Grade.
We made the difficult decision to pull Daniel out to homeschool on May 4th, abruptly ending his school year.
We were in the middle of  a major dispute with our school district and there were attorneys involved.  I won't get into major details but it did get WAY worse before it got better. Absolutely crazy.
Our advice: unless the crap is hitting the fan  and people are outright screwing up majorly, and breaking several federal laws regarding your child with a disability at school, do not  file  due process.  This was an  extremely emotionally draining experience, as well as a time hog.  we had to basically clear our calendar and be ready for anything.

If you have been dealing  with a school district and hitting the same brick walls and getting no or little movement as we were.  My sincerest empathies.  Go to COPAA and Find a great educational attorney or Advocate. Find out what your rights are and fight for it.

We are happy to announce we are no longer amid a Due Process lawsuit.
We were able to attend a mediation with the school district and get what we wanted.
What this means for us is we are going into  a new season.  With a new school, with new teachers, more therapy and yes everyone is getting training in the areas of restraint and seclusion and it's legal and not legal uses..  We get new IEP meetings and documents and both boys are getting new evaluations so their programming and supports match their needs.


We'd Like to thank....

We'd first of all want to Thank God for  pretty much, showing up and rescuing us from the desperate ditch we were in.
2nd (keeping it general because I'd be remiss to forget someone)
Thank you to all of our friends/Family  for your friendship, love and support.
Especially those who gave us sound advice, prayed for us when we needed it, and talked us off the ledge of our sanity, and especially if you made us laugh.
We would like to thank those especially that we know of or don't know about who have been praying along and have prayed "Jericho" prayers for us.  This is a huge answer for us although this may only  right our ship so we can move along.  We appreciate your prayers and covet every last one.

We would like to thank the Miller Family for  volunteering to watch our kids while went to various meetings. We owe you so beyond everything, gratitude doesn't seem enough.

We'd like to thank the professionals we trusted and continue to trust to help us navigate what horrible situation we had been in for a while.  They like to think of themselves like roadside assistance with supernatural vision.  We could not discern how deep a ditch we were in with Daniel and apparently after they dug through records and talked  to us...we had apparently not just gotten  in a ditch but  had also were hanging dangerously off the side of a mountain and had overheated.  We needed a tow truck (due process).  Somehow Daniel had slipped through so many cracks, no one knew what they were doing or where he should be.
as an aside I would like to thank Daniels developmental pediatrician and regular pediatrician for sharing our sentiment about our kids and their situations and for allowing us to use them (although very sparingly) to try and get what Daniel and Jonathan needed.

 What we learned.

We learned several things.
The first being that having a child with special needs comes with a little  bit of a filter.  You see only SOME of the stuff you're dealing with while the rest you may not see completely.  We always hope that we see things seeing totally objectively, but sometimes we can't see everything and that's okay.

Secondly, we cannot do everything we want for our children to the extent we want to.  We strive to be awesome advocates for our children but  there is only so much we can do .  When we discovered there were some pretty heavy legal issues going on in our situation with Daniel, we reached the end of what we could do ourselves and called an attorney. Best and most difficult phone call ever.
We had to deal with our pride of not being able to handle this on our own and now realize we were never meant to go through things on our own.

Being also the parent of a Rare and undiagnosed child a lot of our issues are over not being stuck to a label (because we don't have any) and just treating and dealing with  what issues we CAN see.
We also deal a lot with people who tend to brush us off because our kids "look" normal.
 Looks can be very deceiving.  If you know us well, we fight our well picked battles and try to live life as best we can. Some days we're not going to always win.

We cherish the little things because that's what being blessed is about.

 Me getting an award for leading a project in Jonathan and Daniel's 4H club.

 Jonathan getting The Rookie of the Year Award. (First year in 4H award)

 Perfect attendance

 Jonathan holding a rooster. Probably gets it from his Dad.

 Jonathan cleaning up a park

 Jonathan with his Legos and Gardening project.  Proud of my Rookie of the year,

Sarah playing with Legos... she just gets dragged everywhere.  She's doing 4H projects by default and she's a year shy of being a clover kid.