Happy New Year !

Well - tonight is the annual party at the Makris house. Definitely won't be posting any pics up from tonight :)

Hope you all have had a wonderful holiday season - and have a Safe and Happy New Year !

God Bless

Merry Christmas

Another Christmas Eve and Day has come. Christmas is my favorite time of year. I love the act of giving. I love to see my sons eyes when he plays with something he really likes, or when I give my wife something she didn't expect.

During this holiday I am blessed with a wonderful and amazing wife, a son who words can't say how much I love him, and a loving family.

May you and yours have a wonderful Christmas.

God Bless.

Speech to the Board of Education

Tonite - as my wife says - I made my first step into becoming active in local politics. Well not really - all I did was speak in front of our local Board of Education.

At the last meeting the President of the board said something I really didn't like - so at the meeting this evening I just got up and spoke about it. Nothing major - just letting them know who I am and talking about the comment. More than anything I think it made them know who I am and that I will be vocal about things - especially when it comes to my childs education.

No major new updates to report. Hayden has been feeling under the weather for what seems like 2 months. He was on the "yummy pink stuff" for a week and it seemed to help - but the runny nose is back and a cough now. The joy of 12 toddlers running around a class room all with passing germs to each other.

This time of year is always crazy with all the Christmas parties and family gatherings. I'm thinking Hawaii sound really good right about now !!

Probably wont have too many updates for a couple weeks because of the holidays - but I'll try and maybe post some Christmas pictures and stuff.

God Bless everyone - and have a great Christmas and New Years !!!

Facebook!

As if having a blog didn't make me cool enough - I'm now on Facebook! and so is my wife. So if you are too - look us up.

Always thought I was "too old" for Facebook! - but it's actually really cool. I've connected with alot of family and high school friends. There's also a Fragile X connection as part of the "my causes" application - so I thought that was cool.

Hope you had a great Thanksgiving !! Only 24 shopping days till Christmas !!

God Bless

Happy Thanksgiving !

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

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.

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

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

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.]

http://www.usatoday.com/news/health/2008-09-07-specialneeds_N.htm

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

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

Dads Night Out

The one thing I've learned so far in this experience is that we are not alone. For the first few months after diagnosis Tina and I felt so alone - like this has only happened to us and our lives are just finished. We then came across the Fragile X of Michigan support group which has been tremendous, and Tina has made some friends with a couple of the ladies and they do Girls Night Out and other things - which again, is so great because you really spend time with people who get everything you are going through.

Well until last night - I never really found a Dads Group of guys who are going through the same experiences - not that I was even actively looking for one. Through the friendship we have developed with Ted and Mary Beth I learned about a group of guys who gets together in Dearborn at the Futures HealthCore Therapy Center and the gentleman who is volunteering to host the group is Rich Ham-Kucharski. Again - my skeptical self I thought this would be some boring "Hi, my name is Mike and I have a kid with Fragile X" kinda thing. And again - I was wrong.

The center provided pizza and pop and there were four of us - Rich, Ted, a guy we met named Seamus, and myself. We talked about everything - how we handled the diagnosis, what our fears were, how we handle people who see our kids act up, how we handle family, how we support our wives, what our hobbies are, politics, activism, and I could go on - but it was just great to have a group of guys who have children with disabilities that we could just sit around and shoot the breeze with. I thought I would be really nervous - but being part of this "community" the understanding that everyone has for each other is really heartwarming. I mean - we didn't sit around and hug and cry and stuff - we're men for goodness sake :) - but we understand the feelings each other has and it's really great.

I know I plan on going again and I think Ted does too. We learned that Rich was an avid bowler years ago - and of course my Mother owns a proshop - Rip The Rack (check out the link to the side - plug, plug) and we are thinking of maybe scheduling the next Dads Night Out at Rosebowl Lanes.

We have each other, we have Hayden, and we have family who love and support us - and that means the world to us - it's hard to put into words. These people we've met though and these groups we meet with - they are really helping us get through this and to understand that all over Gods green earth - there are people who understand us - and that feels really good too.

God Bless - Mike

August Update

Typically I would send an email out to everyone we know with updates on Hayden and things going on in our lives. Now that I'm a "blogger" I'm going to post those updates here.

So whats been going on? Well one big change in our lives is our eating habits. Tina has done a ton of research about gluten free diets and organic diets and all the chemicals we put in our bodies that come from our food and the effect they are having on us. Well through her research she suggested that we try going to an organic diet - at least for Hayden. I'll admit I was skeptical - but boy was I wrong. Has he started talking full sentences - no - but the progress he has made since we went to organic in just the sounds he makes and his comprehension has been remarkable. He hasn't lost any of the words or sounds he has learned - when in the past he would learn Dada for instance but a few weeks later it was gone. Now he just babbles like crazy which is light years ahead of where we were.

I will say though - organic is expensive. Not so much with condiments and all the stuff you buy just once in a while to keep in the house - spices, canned goods, etc - but meat is crazy expensive. I can get boneless skinless chicken breasts at our local meat market for a bulk price of $1.99 per lb. Buying it organic takes the price to about $8 or $9 per lb. We've really liked going to Whole Foods Market - but there are only two in the area - and they are about a 30 minute drive. One is right near my office - so I'm able to go at lunch now and then to pick up stuff. I tell everyone this - but organic food really tastes better - I was actually very suprised. It has been good not only for Hayden but for Tina and I as well.

Another new thing coming up is that Hayden is starting school on September 3rd. Our school district has started a brand new ECDD Program (Early Childhood Developmental Delay) at the school 6 houses away from us. The Special Ed Director invited Tina to be on the hiring committee for the new teacher which she was very honored to be part of.

We have already bought him a Little Einsteins backpack and I've taken the day off so we can film the whole thing. He will be going 5 days a week for 2 1/2 hours - so it will be a big adjustment to Tina's daily schedule. Alot of new free time - but I'm sure she will really miss him.

Other than that - not too much more going on. My sister and my sister-in-law are both due to have babies towards the end of August. We are looking forward to being Aunts and Uncles again. We pray everyday for them for smooth births and beautiful healthy babies (my sister is having a girl and the other one will be a suprise).

I will sign off with a saying my wife put up on a chalk board in our house:

See your child before you see the disability. This is a child who has more to offer than you ever imagined. This is a child who will teach you more than you ever learned in school. This is a child who will bring out the kind of love in you that you never knew you had.

Amen to that - God Bless - Mike

FXAM 5k Fun Run & Walk

This past weekend we participated in the 5k Fun Run & Walk put on by FXAM (Fragile X of Michigan). It was another great event to be part of. With the support of so many wonderful people we outreached our donation goal of $1,000 !! The support was amazing and we are so thankful to all who helped us.

The day started out with a Starbucks run because we knew we would need that extra energy - and we found out that Hayden loves Chia Tea Latte's - his Nanie's favorite. I think he drank most of it.

Thanks to Ted and Mary Beth for being so generous at the gate when we got there.

Let me just take a moment to say how wonderful it has been to get to know Ted and Mary Beth - we had such a great time together at the conference and have become close friends - they are amazing people and we are blessed to know them.

The weather was absolutely perfect for a walk - and it was totally not a typical hot and steamy August day - so it was great. We had Hayden in his walking stroller and he had all the amenities - toys, food, books, and someone to push him. Got a little antsy a few times and wanted to walk - which was pretty cool. He likes going for walks with his Mommy so I think he really liked it.

After the walk was the FXAM picnic. Again - another great event to get to know the people in our "community". They had bounce houses and stuff for the kids - it was really great to watch. Tina's Mom was with us and she got a chance to really see and meet all the wonderful people in our lives now.

A great event put on by FXAM and now we look forward to the golf outing in September and then our monthly group meetings start in October. The national conference is in Detroit in 2010 so I imagine we will start planning for that right away.

God Bless

Back from the conference and...........

......wow does my head hurt. :)

My wife and I attended the 11th International Fragile X Conference this past week (7/23 - 7/27) in St Louis. We now think of our life as BC and AC - Before Conference and After Conference. Being newly diagnosed in October 07 we were doing everything we thought to be the best parents we could be for Hayden - and we gave it 110% all the time.

We weren't bad parents - but wow is there so much more to this than we thought. We met some unbelievably dedicated people to the Fragile X cause - therapists, researchers, psychologists, parents, doctors, and the list goes on.....all dedicating their respective talents to helping the kids afflicted by this disorder and in trying to find treatments and cures.

If I would say that I went to a dinner reception 5 days ago and was able to spend time and meet with some of the most high profiled hollywood actors or sports stars - I would have been pretty impressed with myself. Now 5 days later - I can say that I spent time with Paul and Randi Hagerman, with "Mouse" and Tracy, with Marcia Braden - and I would tell you today Tiger Woods who? George Clooney who? Don't get me wrong - maybe Tiger and George to great things for charity - but their lives are a more high profile than the other things they do.....these people we met over the last 5 days - they are my heroes and my sons too.

I became a new parent over the last 5 days. Do I love my son anymore today than I did 5 days ago - not at all - I still love him with every part of my being just as I did before. But something changed in me - and I'm sure it will take time to actually now how that change will manifest itself - but I feel different. I look at my son different. He's no more or less special than he was - but I know so much more about him now than I did before. Maybe that's it - maybe I've become closer with him because I now know more about who he is. I don't know - it was a really strange feeling coming home after those 5 days. It was a new home and new time in my life - this experience was truly life changing. I know my wife feels the same way.

Back in February 2008 we learned about a support group that meets monthly as part of the Fragile X Association of Michigan. This is where we learned about this conference and are so thankful that we went. I plan on becoming much more involved with FXAM and through that probably much more involved in the National Fragile X Foundation as well. There are some advocacy days in March in Washington D.C. to lobby for more funds and research. I've always wanted to dable in politics and this might be my way.

Life is different - it's definitely not the way I thought it would be - I don't think any parent has any plan for this kind of life. But I look forward to every day, to every challenge, to every victory - I know God has a plan for me - I'll be sure to ask Him why it was this plan when I see Him - but He has a plan and without this plan Hayden would never have been part of our lives - and I can't imagine our life without him.

God Bless - Mike

Fragile X of MI 5k Fun Run & Walk

On August 10th my wife and I will be participating in the Fragile X of MI 5k Fun Run & Walk. This is a great event to help raise funds to support Fragile X families in MI going to local and national conventions, helping our local support group, and funding the National Fragile X Foundation for testing and research.

We have set a personal goal to raise $1,000 for this event - and already through July 8th we have raised or had committed to our fund $1,320 !! It is truely astounding - and the prayers, well wishes, and words of encouragment have been amazing.

You all are truely angels - God Bless you all !!

If you stumble upon this blog and would like to support us as well - please send an email to ourfxjourney@gmail.com for info on how to donate.

The Fragile X Factor

A great article in Time Magazine this month about Fragile X.....

http://www.time.com/time/magazine/article/0,9171,1818268,00.html

.....really helps explain it in less technical terms.

God Bless.

Moving Forward

I've created this blog to share our experiences, struggles, and triumphs with Fragile X Syndrome. My son Hayden was diagnosed with Fragile X in October 2007. Since that time our lives have been completely changed. What we thought was normal and what we thought our life would be is nothing like what it actually is or what it will become.

What we have learned though in the past few months since D-Day "diagnosis day" is that our lives have not come to an end - but yet have only begun. Each new day brings it's own set of struggles and challenges - yet each new day also brings the joy, excitement, happiness, and the true blessing from God of being parents to in our eyes the most wonderful and special child in the world.

It is a struggle, but each day we move forward - each day is better than the previous and each day is to be cherished to its utmost potential. In the past few years - and especially the last 12 months - I have learned that nothing is to be taken for granted because it can all change without your approval. As I write this first post I make a personal commitment to live each day to the fullest and to move forward when life knocks you back.