First day. Give a teacher a chance.

Some times i wish i could hit the pause button on how fast they are growing up.
So proud that they are starting 2nd, fourth and 7th grade.
This year finds J at the Jr. High not but 2 blocks from where we live. He is terrified of this new adventure.
He needs to know he's not alone.

D started 4th grade in a functional academic classroom with 4 other kids. I pray this year is better than the last ones.

S started 2nd grade and has started dyslexia therapy at school.
She was identified by the school after running a full initial evaluation after I asked for one in writing. She has a 504 because Texas won't recognize dyslexia as the learning disability it is. We were told she was too intelligent to need special education services.
Word to educators: if parents come to you and state there's an issue... Do us all a favor and dig into it. You'll find often times there is a problem.
The teachers could do nothing but complain about handwriting and reading issues.
I do not want to waste time our your energy on things that are trivial.
Yes, it goes against what your district and campus admins say about us parents.
Honestly, I'm your biggest supporter although i am THAT parent when necessary.
It's really not you making decisions about kids in your classroom not receiving the help they need. Often times in my experience it comes down to either a campus admin or someone from the head office.
I've experienced teachers who speak out for their kids at IEP meetings get shunned... Shouted at and threatened.
This doesn't help anyone but the district save money by not helping the kid.  It hurts the teacher in the classroom. She can't help the student. Even if it's help in something basic like communicating needs.
Teacher you deserve my blessing in the beginning of the year.
Not all teachers are evil. Not all wear halos either. They are humans... A few are wonderful and they earn it with every kid.

Go bless your teacher and give your support.

Sarah at Blue Bell Ice cream factory in Brenham, TX (20 mins away from camp)

Because cow statues need hugs! 

 Texas Neurofibromatosis Foundation  Family Camp held at Camp 4 all in Burton, TX (Washington County) . 1 hour from Austin and 1 hour from Houston.

 wildlife at camp

Campfire fun

Sarah on a horse, of course

Daniel obsessing over animals

Because Jonathan was licked by a horse Daniel had to try.

Jonathan Braving the Giant swing.  This was a big year for him conquering his own fears.

Sarah Making new friends!! Sweetest kids ever!

Seeing our heroes and friends alike

Fishing

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