On this day of Thanksgiving - I have many things to be thankful for: The Lord and all of His blessings, My wife and her love and support, my son and all the wonderful things he brings into my life, my job and what it provides for us, my family and their love and support, and the troops who everyday whether home or abroad put their lives on the line so that I may be safe and live in such a free country.
We live in some challenging times for our country and the world - yet we all need to take a step back today and really analyze what we are thankful for. I'm sure all the things we can be thankful for far outweigh the negatives or challenges in our life.
Happy Thanksgiving to you and yours.
God Bless
Thursday, November 27, 2008
Sunday, November 16, 2008
First Snow and other Stuff
Wow - they said flurries today - but we probably got a couple inches. Didn't really stick to the cement - but the grass is pretty covered. Hayden has been fighting a cold for the past few weeks - so we didn't go outside and play in it.
Had our first parent-teacher conference last week. Everything seems to be going good - still have alot of work to do on his IEP goals. Hayden has become friends with a little girl in his class who missed a few days - and the teacher said he seemed to be looking for her during the week. It's really good that he's making friends and his social skills are really developing.
We've been pretty lax with the organic diet lately and have noticed a regression in his speech. So we were really dilligent the past week and have seen a noticeable improvement. We both need to be much stronger when it comes to making sure he eats organic. It really seems to help.
Tina and one of her friends in Fragile X of Michigan are having a fundraiser to raise money for the FX Conference in 2010. Take a look at the flyer in the Lia Sophia link in my favorites. Leave a message or send an email for more info. The event is Nov 22nd.
Speaking of fundraisers - we met a guy who owns a bar and does Texas Hold'em Fundraiser tournaments for non-profits. I think I am going to do one for FX - I'll post more info here when I know more - but it looks pretty cool.
Well - it's opening of deer rifle season - and while I didn't go up this weekend - I'll be heading up this Thursday nite. Wish me luck. Venison is for sure as organic as you can get. Know I can really say I'm hunting to feed my family.
Take care - God Bless.
Had our first parent-teacher conference last week. Everything seems to be going good - still have alot of work to do on his IEP goals. Hayden has become friends with a little girl in his class who missed a few days - and the teacher said he seemed to be looking for her during the week. It's really good that he's making friends and his social skills are really developing.
We've been pretty lax with the organic diet lately and have noticed a regression in his speech. So we were really dilligent the past week and have seen a noticeable improvement. We both need to be much stronger when it comes to making sure he eats organic. It really seems to help.
Tina and one of her friends in Fragile X of Michigan are having a fundraiser to raise money for the FX Conference in 2010. Take a look at the flyer in the Lia Sophia link in my favorites. Leave a message or send an email for more info. The event is Nov 22nd.
Speaking of fundraisers - we met a guy who owns a bar and does Texas Hold'em Fundraiser tournaments for non-profits. I think I am going to do one for FX - I'll post more info here when I know more - but it looks pretty cool.
Well - it's opening of deer rifle season - and while I didn't go up this weekend - I'll be heading up this Thursday nite. Wish me luck. Venison is for sure as organic as you can get. Know I can really say I'm hunting to feed my family.
Take care - God Bless.
Sunday, November 2, 2008
November Update (About Time !!)
To all my loyal readers - my apologies. Been a crazy couple months - I can't believe it's already November. I love this time of year. I've been out hunting once already and am looking forward to another weekend spent in the woods for the opening of rifle season. Thanksgiving will soon be here - which starts the Christmas holiday season. Wow - another year is about to pass.
Well alot has gone on since the past update - so I will try to fit it all in and not get too wordy.
School
I think Hayden has suprised us both with how well he has adapted to going to school. But I think the routine of everyday has been really good. We have seen great progress with his social skills and just his attempts to play with children which he didn't really do before. He gets speech throughout the week and also thankfully qualified for OT and PT as well - which he gets once a week each. We haven't seen a whole lot of progress on the speech side - but we know this takes time. You can tell sometimes he really tries. He has a lot of sounds and we know he says some things to us sometimes where he knows what it is - but we have no clue. But with the signs we have taught him and just knowing Hayden and his personality and routines - we can communicate pretty well with him - and that is really great.
Hayden went on his first field trip this year. Early in October the entire pre-school class (regular and special ed) went to an apple orchard. It was a pretty long day - so towards the end Hayden started to fizzle out - but overall I think he had a great time. Here are some pictures
I think he really likes riding the bus. He was also in our cities Homecoming Parade and got to ride the bus with daddy.
So all in all - school is going fairly well. Tina gets some "personal" time each day and I think it's really great for her to have that time. I get to go to work each day - so being a stay-at-home mom - that time is really beneficial.
Soccer
Through some friends of ours we heard about a soccer team in Grosse Pointe for children with special needs. I was a little skeptical at first thinking he was kinda young and probably wouldn't do all that well - but as usual Tina was right - so we signed him up. I don't think he really understood the whole concept - maybe thought we were just out at a park playing - and kicking the ball wasn't something he really wanted to do. But with some bribery (toys and food) he and I would kick the ball for about 20-30 minutes of the time we were there. After the season was over they had a little halloween party and all the kids go trophies. We will definitely do it again next year - it was great to get out like that.
Playhouse Disney
Hayden loves the Disney Channel - The Little Einsteins, Pooh, Mickey Mouse, Handy Manny, The Doodlebops - all that stuff. We saw Playhouse Disney in May when we went to Florida, but a different production of it came to The Palace of Auburn Hills near where we live. I got some tickets for us and also for my niece and her parents. The kids had a great time - and so did the parents. We were in a suite - so it was a really comfortable situation. Not sure how it would have been on the main floor. It was really great to watch the kids faces as the characters came out. I was kind of bummed that all the characters didn't have costumes - for example the Little Einstein's were actual people while Pooh and Mickey were in costumes. I think Hayden would have related better if the LE's were in costumes - but he still really enjoyed it.
Other Stuff
Tina and I are still very involved in the Fragile X Association of Michigan, and thusly that National Fragile X Foundation. We are blessed to have the 12th International Conference in 2010 right here in Michigan. We are now actively in the planning stages of that. I'm hoping to become more involved as time goes on with the foundation and I'm planning on traveling to Washington D.C. in March for advocacy day. There will be more info on these activities as time goes on.
All things considered - things are pretty good. Most of our days are good - but we still get those days here and there that are very challenging. On October 22nd it was 1 year since we got our diagnosis. I think back to that day and how devastated we were. I know personally my thoughts were "he'll never play sports, he'll never ride a bike, he'll never go to school, he'll never....whatever"..........just all kinds of negative thoughts - actually, very selfish thoughts because they were all about things I wanted my child to do that I wouldn't be able to do with him. He played soccer this past year, we've been working on the bike thing, he goes to school, he has friends, he loves his toys.......all kinds of wonderful things I probably would have taken for granted - but because of Hayden, he makes each thing we do, each game we play, each day we wake up better than I ever imagined it could have been.
In two days from this post - we as Americans get to do one of the most precious things in our great democracy - we get to vote. No matter your political affiliation - please, please get out and vote. Much blood has been spilled to defend these freedoms we have - and God Bless all those who protect us and help us protect those rights. Those men and women have a courage I can never realize. So please - get out and vote.
I promise to update more often.
God Bless
Well alot has gone on since the past update - so I will try to fit it all in and not get too wordy.
School
I think Hayden has suprised us both with how well he has adapted to going to school. But I think the routine of everyday has been really good. We have seen great progress with his social skills and just his attempts to play with children which he didn't really do before. He gets speech throughout the week and also thankfully qualified for OT and PT as well - which he gets once a week each. We haven't seen a whole lot of progress on the speech side - but we know this takes time. You can tell sometimes he really tries. He has a lot of sounds and we know he says some things to us sometimes where he knows what it is - but we have no clue. But with the signs we have taught him and just knowing Hayden and his personality and routines - we can communicate pretty well with him - and that is really great.
Hayden went on his first field trip this year. Early in October the entire pre-school class (regular and special ed) went to an apple orchard. It was a pretty long day - so towards the end Hayden started to fizzle out - but overall I think he had a great time. Here are some pictures
I think he really likes riding the bus. He was also in our cities Homecoming Parade and got to ride the bus with daddy.
So all in all - school is going fairly well. Tina gets some "personal" time each day and I think it's really great for her to have that time. I get to go to work each day - so being a stay-at-home mom - that time is really beneficial.
Soccer
Through some friends of ours we heard about a soccer team in Grosse Pointe for children with special needs. I was a little skeptical at first thinking he was kinda young and probably wouldn't do all that well - but as usual Tina was right - so we signed him up. I don't think he really understood the whole concept - maybe thought we were just out at a park playing - and kicking the ball wasn't something he really wanted to do. But with some bribery (toys and food) he and I would kick the ball for about 20-30 minutes of the time we were there. After the season was over they had a little halloween party and all the kids go trophies. We will definitely do it again next year - it was great to get out like that.
Playhouse Disney
Hayden loves the Disney Channel - The Little Einsteins, Pooh, Mickey Mouse, Handy Manny, The Doodlebops - all that stuff. We saw Playhouse Disney in May when we went to Florida, but a different production of it came to The Palace of Auburn Hills near where we live. I got some tickets for us and also for my niece and her parents. The kids had a great time - and so did the parents. We were in a suite - so it was a really comfortable situation. Not sure how it would have been on the main floor. It was really great to watch the kids faces as the characters came out. I was kind of bummed that all the characters didn't have costumes - for example the Little Einstein's were actual people while Pooh and Mickey were in costumes. I think Hayden would have related better if the LE's were in costumes - but he still really enjoyed it.
Other Stuff
Tina and I are still very involved in the Fragile X Association of Michigan, and thusly that National Fragile X Foundation. We are blessed to have the 12th International Conference in 2010 right here in Michigan. We are now actively in the planning stages of that. I'm hoping to become more involved as time goes on with the foundation and I'm planning on traveling to Washington D.C. in March for advocacy day. There will be more info on these activities as time goes on.
All things considered - things are pretty good. Most of our days are good - but we still get those days here and there that are very challenging. On October 22nd it was 1 year since we got our diagnosis. I think back to that day and how devastated we were. I know personally my thoughts were "he'll never play sports, he'll never ride a bike, he'll never go to school, he'll never....whatever"..........just all kinds of negative thoughts - actually, very selfish thoughts because they were all about things I wanted my child to do that I wouldn't be able to do with him. He played soccer this past year, we've been working on the bike thing, he goes to school, he has friends, he loves his toys.......all kinds of wonderful things I probably would have taken for granted - but because of Hayden, he makes each thing we do, each game we play, each day we wake up better than I ever imagined it could have been.
In two days from this post - we as Americans get to do one of the most precious things in our great democracy - we get to vote. No matter your political affiliation - please, please get out and vote. Much blood has been spilled to defend these freedoms we have - and God Bless all those who protect us and help us protect those rights. Those men and women have a courage I can never realize. So please - get out and vote.
I promise to update more often.
God Bless
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
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
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
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
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