Monday, September 29, 2008

Still Here

Sorry - been a busy couple weeks and I haven't been able to update. I need to get in a more regular update schedule.

I will work on some new posts this weekend.

Thanks for Reading.

God Bless

Monday, September 8, 2008

Some Shout-outs

Couple things I haven't mentioned - so I wanted to catch up on them.

First - both my sister and my sister-in-law had their babies - ON THE SAME DAY !! I got the call in the morning on my way to work that my s-i-l went into labor - and Evan Wayne was born the morning of August 26th. Then that evening I got a message from my father in Las Vegas that my sister had her baby - Isabella, Izzy for short.

They are both beautiful and we are so happy to be Aunts & Uncles again - 3 from my sister (2 boys / 1 girl) and 2 from my sister-in-law (1 boy/1 girl).

Second - I want to give a big shout out to my good friends Joe and Dave, and Dave's buddy Chris - as well as each one of their wives. FXAM had their annual golf outing this past weekend and these guys and gals all supported us by joining us in the golf outing and in the evening for dinner. Their support for us and for Hayden has been wonderful - and we thank them for helping FXAM in our mission to raise money for support and research. If I remember correct, the outing raised over $10,000 for FXAM - which is wonderful.

It was a perfect day for golf and the grilled steak dinner was great. We then all headed to a new local watering hole and enjoyed some music and dancing.

I think that's all I forgot.........for now :)

God Bless

2008 Presidential Election

"To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House." - Sarah Palin

And with that - I was officially supporting the McCain / Palin ticket. It's very well known in my family I am a Republican. I have been fighting with myself this year because I wasn't really big on McCain - yea, I was probably going to vote for him - but I didn't have a lot of confidence. I was hoping he would put Romney on the ticket - I supported him in the primaries and would have felt better with him on the ticket.

Well - to the entire nations suprise McCain picked Sarah Palin. Within hours we knew all about her family and I read about her most recent son Trig who had Downs Syndrome. My first comment to my wife was - someone in the White House with a soft spot for kids with special needs - what a no brainer vote this is going to be. She wasn't so sure at first - as a lot of people are saying - how can she raise a special needs child and be away so much being VP. But when she uttered those words above during her acceptance speech - wow - I was blown away.

Since when have children with special needs been put in such a national spotlight? How great for the entire special needs community can a VP - a woman no less - with a special needs child be for this country? There was a really good article in USA Today today (that sounds funny) and I'm linking it below. [Don't know if I can - I'm still learning the whole blogosphere sharing and linking thing - so I will say it is being linked with no malicious intent so if I've done something wrong I'm sorry and will correct immediately if contacted.]

So I will be an unabashed supported of McCain / Palin for the next 2 months. Not only is it the party that empodies my ideals - but it now has a candidate that embodies my new life passion - the special needs community.

It's strange - when Hayden was diagnosed - it was the worst time in our lives. In these past months since October 2007 I've become closer with God, I've began meeting wonderful people, I've gained this passion for a cause higher than myself in hopes to better Hayden's life and the lives of others, and now Palin has this connection with my new passion. It's been a strange year of new things in my life - but my life has never been so fulfilling. I don't know if I'm making sense but I just keep getting these signs and I know there was a reason we were chosen for this task - and I'm going to do everything I can to not ignore this calling.

God Bless - Mike

Thursday, September 4, 2008

First Day of School

Our little guy is now a pre-schooler. Today was his first day - and it was a long journey to get him here.

It was early this year that we had our first meeting with the new Special Education Director for our school district. Our district had never had an ECDD (Early Childhoold Developmental Delay) program and the new director had come from a district that ran a pretty successful one - so we felt confident he knew what one should look like - just weren't sure how much the district would cooperate.

At first our district was about a year away from having a program - so we would have to get into an adjoining districts program if we wanted our son to start in September. The other district is known for being very tough and selective on who it "allows" in their program so we had to go through many different hoops and paperwork. We were told our son who is not Autistic needed to be listed as ASD in order to qualify for this program. We toured the ASD class room and were not sure that we wanted our son in that program. Not because these were Autistic kids and we didn't want him near them -not at all - but we felt Hayden would not be challenged enough in the class setting and he would be much better in the CI (cognitively impaired) room.

After touring the classroom and deciding to go CI - I met with our districts director only to find out that they would indeed by having their own ECDD program and the school board had given approval to start in September. This was great news because the school would be only 6 houses away from us.

In order to start this program the district needed a teacher - and the day we got back from the National FX Conference there was a message on our phone asking Tina to be one of the people on the panel to interview potential candidates. I feel we have developed a pretty good working relationship with the new director and he values our opinions and our desires for Haydens success. The selection process was really good and a teacher was hired.

Next - the three most difficult letters for special ed parents - the IEP (individual education plan). It is federal law that all special ed children have an IEP - where the parents and a team of educators and therapists put together programs and education plans for the child. We've heard many stories about parents struggles to get services and proper goals for their children - and we armed ourself with as much knowledge and prepared as much as we could for our time.

We laid out a few nights before what our goals were and what we wanted and also put together a "get to know Hayden" packet that had some of his traits, favorite things, and just some info on his FX - so the teacher who didn't know him had an idea of who he is. Oh - and a box of Tim Hortons Timbits helped too. The IEP team was very impressed with us - and while we didn't really discuss goals - we felt very comfortable with the team. We agreed to meet again in 30 days so the teacher had a chance to get to know Hayden and we could put together better goals. Overall - it was an ok meeting - and we feel pretty comfortable that our team will listen to our concerns.

Which leads to today and his first day of pre-school. He put on his Little Einsteins back-pack - and with some coaxing and prodding walked to school as Mommy and Daddy took pictures and filmed. He wasn't too happy to be in the classroom when we walked in - but we took him in and let him go - and headed to breakfast. Teacher said he did pretty good - got a little tired towards the end - but the night before he didn't sleep too well and this was his first day - so we think it will get better.

And so our education journey begins. Our ultimate goal for these 2 years of pre-school is to get Hayden prepared for full inclusion into Kindergarten without having an aide to help. Every IEP we sign and every step we take is to get to that point. Then - we evaluate where we are there and make more goals.

I'm sure this will be a process of ups and downs - and the road will not be easy. But we are prepared to give Hayden everything we can - and we know he can do it.

God Bless