Back to blocks...urrrggghhh!!

What a whirl wind July was. Back home for 10 days. What a crazy trip. We shoved so much into those 10 days. We had a wonderful time seeing as much family and friends as we could. Thank you to all of you for making the time and working around our crazy schedule. I know a lot of people got missed. We'll make up for it next time. Here in Texas it's really just us so we have a set routine, its very quiet and not a whole lot of exciting things happen. Back home it was not like that. Lots of noise, lots of people and no set routine. Poor Hayden was so overwhelmed. Some days I just wanted to cry watching him self stim and try to get his little body right. The last day was the absolute worst. He was so off and it seemed like nothing Mike or I could do to help him. Mike and I were gone much of the time so we were not there to regulate his schedule and eating. Which we have learned over the past few years is key to keeping Hayden balanced. We will do a lot of things different next time. He talks about everyone we saw often so I don't think it was to bad for him. I just think he prefers everyone to come to his house...lol So there you guy come and visit!!!

The Fragile X conference was in Detroit this time. What an awesome event. I'm proud to say we were a small part of the planning of it. Not a big part. We moved right about the time it all got really going. Sorry to our FX friends in Detroit. They did a great job and it was an amazing event. Thank you so much to our moms and my sister who volunteered we really appreciate it! This was our second conference and much less emotional and crazy then the first. We went only to the sessions that pertained to us and tried not to stretch ourselves to thin. It made a huge difference. Here is the process I went through at conference.

Day 1 - OMG!!! I'm a terrible mother and I have seriously failed my child! Why haven't we been doing all this stuff he would be a genius by now if we'd been doing all this stuff! He would at least be potty trained. What is wrong with me! We need to get him a swing for inside our house. (which we did and its not even put up yet!)

Day 2 - Whew it's not so bad we are doing okay. Lots of kids are not potty trained yet. How could one person do all that anyway. Wow these moms and dads are so amazing. Wow my husband is such a great dad and what a awesome advocate for our son. We are doing pretty good. Could we do better? Sure, but we are doing what we can. What a great opportunity it is to be in the same place with so many amazing people. The knowledge you gain is just amazing. We are going to make a clear plan and set it in motion. We are going to rally Texas to ban the "r" word and work with other families to get our message heard and Fragile X Association of South Texas up and running. We need a conference in Texas.

Day 3 - When is the party!!!!! My brain is fried and I just want to eat chocolate and dance!



It truly was so inspiring. To watch families with struggles just like mine, with struggles bigger than mine, not just manage but thrive. My FX family never ceases to amaze me. Seeing old FX friends, meeting new FX friends, and being able to see faces of some of FB FX friends was great and like I said before just inspiring! You all truly amaze and inspire me. See you in Miami!!



Several month ago I was out to dinner with two other FX mommies. We were talking about the first time our children were evaluated and they could not stack blocks. Well we all did what every good mommy does (well maybe just special needs mommies) we bought a ton of blocks and worked tirelessly on the task. And if those block were not good enough and our boys were not interested in those blocks we bought special blocks with pictures in them and lights and ones that made sounds. I swear we had about 4 different sets of blocks. Well eventually our children all learned to stack blocks. YAY boys...you rock! This is something that most parents take for granted their children just learn to stack blocks. It doesn't take months to teach this concept it just happens. So when Hayden learned to stack blocks consistently I loving tossed all these stupid blocks out the door. Not really I think I just handed them down. So imagine my horror when on his current OT evaluation(we put Hayden in private OT) it says "has difficulty with block patterns" WHAT!!!!!! So I politely ask the OT what this mean because "I know Hayden can stack blocks". She says "Hayden cannot imitate a pattern with blocks and I would get out your blocks at home and practice this with him". "You know Ms. Makris practice making bridges and patterns, with simple colored blocks not fancy ones". I did not tell her we don't have any blocks. What parent doesn't have blocks? I had 4 sets of blocks at one point for crying out loud. I did not tell her I hate blocks and every thing those silly little squares signify and how hard my child struggled just to stack 4 blocks high. Apparently 4 is some magic number in block stacking evaluations. I didn't tell her that I was thinking maybe blocks are boring and that's why he doesn't "want" to make patterns and build bridges with them. I didn't say any of this and I will do what every good mommy does go out and buy a simple set of blocks that we can make bridges and patterns with. Back to blocks again....urgghhhh!

Enough Said

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth

It was time again for another birth.
...
Said the Angels to the Lord above – “This special child will need much love.

“His progress may be very slow

“Accomplishment he may not show.

“And he'll require extra care

“From the folks he meets down there.

“He may not run or laugh or play

“His thoughts may seem quite far away

“So many times he will be labeled

“'different,' 'helpless' and disabled.

“So, let's be careful where he's sent.

“We want his life to be content.

“Please, Lord, find the parents who

“Will do a special job for you.

“They will not realize right away

“The leading role they are asked to play.

“But with this child sent from above

“Comes stronger faith, and richer love.

“And soon they'll know the privilege given

“In caring for their gift from heaven.

“Their precious charge, so meek and mild

“Is heaven's very special child.”

Warning: It's emotional....

Ok so this entry has been rewritten about 6 times. It's been a crazy emotional month to say the least. The original one was pretty negative and way to emotional (even for me) so I decided to rewrite it. I know a lot of you read this to see what is going on with the Makris family since we moved so I decided to give it all to you; the good, the bad and the ugly. With a little less drama.

It started out with Mother's Day. I am very blessed to have a husband that has always made my mother's days very special and this one was no exception. Other than all my emotions..lol Mother's day was bitter sweet for me this year. For those of you that don't know we lost a baby in February. This was our last chance to be pregnant so we were really hoping for a miracle. The odds were pretty much stacked against us from the beginning but I still prayed and hoped we would get that miracle. It hit me really hard and shook my faith to the core. Some days I hate what Fragile X has done to my life. I know it has made me stronger in a lot of ways but some days its hard to find the positive. If I could take away the Fragile X I would. Does that make me a bad person...I don't know. I guess that's why we all pray for a cure. To have it all just without the messed up gene.

Then we had IEP day. This one hit really hard. For anyone who doesn't know what an IEP is it basically lays out the plans for the school year for any child who needs it. It involves sitting in a room with a bunch of school professionals telling you how your child "tested" on evaluations. People telling you how far behind your little man is. It makes me feel like a failure of a mom every year. I cried for 2 days straight. Let me just tell you that I discovered the power of Xanax. Where has this been all my life? Except for the fact that I wanted to sleep all the time it did keep the emotions in check for the most part. It was especially tough because we were told he wasn't going into kindergarten. This will be the first year he is not going to be in same grade with all the kids he's grown up with. I know its totally selfish of me but I really liked being able to say that he was in preschool with all of them and we had that in common. So now I get to here all about pre-school graduations and preparing for kindergarten. Don't get me wrong I am so happy for all of my friends and family and their kids. I celebrate with them absolutely. It's just that selfish part of me that wants that too. Now, do I think Hayden is ready for Kindergarten?..no he's not. Do I think in the back of my head somewhere I was preparing myself for this?...Absolutely! It just hurts to see it in writing. With that said he will be spending a portion of his day in Kindergarten but the majority of his day will be in PPCD. He is for sure in the best place possible for him right now. The teachers are great and the program is amazing! However, this summer will be preschool boot camp with drill sergeant mommy! It's all I know how to do...don't worry we'll have fun I promise! Ok, to all my friends reading this who are going through normal transitions with your children and school please keep telling me about it. I really do want to hear and I am really happy for all of their accomplishments.



Ok here's where it all gets better. After IEP week we decided to go to the ocean. What a great idea. I suggest anyone who has the option available use it! We were so worried because when we were in Florida he hated the ocean, wouldn't go near it. Hated the noise. Just plain out hated every minute of it. At the time it was just to overwhelming for him. Not this time he LOVED it! Loved being in the waves. The more they crashed the more he loved it. I was having mini heart attacks with how brave he was getting. What a relaxing and wonderful day. Great way to relieve stress and let the worries go. Well all that is until the ride home when Mike and I realized how fried we got. Well you really do need to pay attention to those expiration dates on the sunblock. Who knew???

My mom was in town and we celebrated her birthday. While eating cake Hayden looked right at her and said "Nanie, I love you"!! My mom and I cried like little babies. That freaked Hayden out cause he couldn't figure out why we were crying. He'll probably never say that phrase again...lol

So now its getting into routine and finding our rhythm. It feels so good to be in that place. I never knew how much being out of routine would effect me. We have pretty much from the beginning not had our own routine. We've had people staying with us or Mike has been out of town. Normal life has been well..nice. I guess I can admit that Texas is not that bad. Meeting people has really helped and having other mommies to talk to has been a God send. I will say that I cannot believe how hot it is and the humidity is disgusting. Dry heat...I was lied to for sure. Where is this dry heat? I haven't seen it yet! But I did find a biggby equivalent..oh and the best part its right next door to a really cool jewelry shop! I still miss playgroup and girls nights. Can I just tell you that not being there for my nieces graduation from preschool is killing me. We have skype, the phone and we'll be home in a little over 7 weeks.

Hayden's new phrases..."what are you doing?" He said that to me the other day and I just about fell over! "Have fun!" He says this when he say bye, see you later, have fun! It's too cute. We are now starting to get our names with a phrase like "bye mommy" or "where's daddy?" Hayden is now into Thomas the train. The other day while at the store he wanted to take "Thomas home to see Baylee"! How do you say no to that? Well I did cause have you seen how expensive that Thomas stuff is?? Anybody getting rid of Thomas the train send it our way!

Some of our dreams for Hayden seem so far away...then I look at how far he's come and think that nothing is impossible for this little man!

Thanks for dreaming with me,
Love Tina

There was a lizard on my front porch!!

Yep you read it right we were visited by a really cute lizard. I say cute cause it was tiny and did not run across my foot. Otherwise it would have been a dead lizard!

My mom is in town right now!! So exciting she is helping us decorate the house. Hayden is so happy to have her here. He was so excited when he realized day two she was still here.

We finally got Hayden his swing set. Mike is in the process of putting it up. It will accommodate his therapy plat form swing and the Ikea soft swing! Yay!!! We opted for a papasan chair in his room because of renting and lack of support in the ceiling we couldn't hang up the other swing. We have just recently learned how much the boy loves trampolines. We knew he loved to jump but he would always just watch other people jump on a trampoline. Not any more!! They had one set up at the play scape store. He went right to it and started jumping all by himself. That will be our next purchase. Side note: I think I want my own papasan chair...wow is that comfy!

Texas is beautiful but it just doesn't feel like home...its been really hard to meet people. I all but had to give a blood sample to join a moms group and then found out it really wasn't for me. The kids were too young for Hayden. I guess I was pretty spoiled when on the first week of preschool in Harper Woods I met two moms and we are still friends. I would give anything to be able to be back at our play group again. I miss that socialization so much. Ohhh what I wouldn't give for a coffee night or applesbees with a friend. Ok no more talk about that..tearing up! Ok so its not all bad I have been out with Deanna for a girls day and we had a blast. Thank God for Deanna! I'll get there...right? I'm nice...I'll meet people...lol

On the up side Hayden is really doing great in school. I have no issues at all with him going in the class room. He goes to the library every week...not sure he's real quiet in there but he goes. When I pick him up from school you can hear him talking the whole way down the hall. "Mamma see Baylee!" Here are some of of Hayden's new phrases..."Dude" (yep daddy taught him that one)... "Mommy not nice"..."That is not ok"...."how about?" (He looks int he fridge and say "How about...."

XOXOXO
Tina

Texas up date!

Most of you will be getting this letter in the mail with our change of address cards..yep I cheated but this pretty much sums it up for now. I did add a little bit to it so its not the same. I'll give you more next week...promise!


First of all we want to start by saying thank you so much to everyone who came to our going away party. We are truly blessed to have such wonderful family and friends. What a great night. I hope you all had a great time. We would also like to thank everyone for your love and support with our move. Your encouragement has meant the world to us.

Our first few weeks in Texas:

Hayden has had some adjustment issues. We have had to add a lot more sensory into his day. Everyday seems to be getting better the more we fall into our new routine. However the 5:30 wake up has not been fun (mostly for Mike). On the plus side we are getting naps again. His new school is great we love his teacher. The great thing about this district is that they really include special needs children with the general ed. It’s been great. Hayden attended his first pep rally and sat on the gym floor for over an hour and just watched what was going on. Next week he will be participating in preschool special Olympics. His new thing is the “freeze” game. He makes us do all these things (stand up, jump, sit) then we have to freeze. He puts his hands out and says “freeze” it’s so cute. He is talking a ton and we are getting some full sentences it’s been really exciting.

Mike: loves his new office. He comes home in a great mood everyday. He loves that you can get tacos from a trailer at midnight in the AutoZone parking lot. Every guys dream! He just replaced whitey runs with taco runs! When in Rome..

Tina: The weather has been great, a little muggy (dry heat yeah right) but great. We’re outside most days. There is so much to do. The shopping is tremendous…drool worthy really. It’s been great therapy! Bugs have not been much of a problem so far. Everyone has me so freaked out I can’t look at a fuzz without thinking it’s a bug. I do really miss biggby coffee…haven’t found anything like it here yet.

Baylee: Loves the weather and how many walks we go on now.

Zoë: Had a rough time at first. She stayed in her carrier for the first 2 days and wouldn’t come out. Then it took her a while before she would come out of the closet. She’s fine now and acting like a princess again.

Our new house is great! We are all getting a nice workout from the stairs!

The coolest thing in San Antonio (besides the Makris family of course) is by far Morgan’s Wonderland! Morgan’s Wonderland is a special needs amusement park, the only one in the world. We took Hayden and he loved it! His favorite things were the slides with rollers, sensory room and water guns. Everything is designed with Children with Special Needs in mind. Everything is wheel chair accessible and they only allow so many people into the park so that it is not too overwhelming. The best part is Hayden gets in free and anybody who comes with him only pays $5!

Thank you for all of your calls, emails, FB posts, texts, and cards over the last few weeks. They mean a lot to us and we appreciate them.
From the bottom of our hearts we love and miss everyone so much! We’ll see you in July! Feel free to come and stay any time, we’ve got the room!

Tina

Changing of the Guard!!

Hello Everyone!

I have officially taken over this blog. Sorry you will no longer get the matter of fact, eloquent, political posts you once got with Mike. I am much less proper and way more emotional than Mike. But hopefully I can find more time to update this more often.

So to update you all. We now have a house in San Antonio! We actually have a moving date. Well here's to hoping this was all just a dream and would go away. Can I just say that I am so scared to leave the support of my friends and family not to mention clean 3.5 bathrooms! I am however looking forward to the weather and new opportunities for our family. Praying that everyone comes to visit and I will probably be counting down the days until July when we fly back home.

When you have a child with special needs it is scary to lose your support network. I have the greatest family and some awesome friends. Its so nice to just make a call and get a break if I need it or have a friend to just hang out with and get away for an evening. I truly believe sometimes getting away makes me a better mom. Time to refresh and just get a little girl talk and of course dessert is usually involved. Now I know I will make new friends and establish a new support network we have already met some really nice people. It's just really hard to leave your mom and your sister when you are a woman. Mike and Hayden are probably going to breeze through this transition its me that's going to have the hard time....lol

Any way hope you don't mind the changing of the guard to much!!

Love,
Tina

October Update

It's been a long while since I've posted on this blog - and oh how things have changed in our lives. I truely can't believe that it's nearing the end of October. The year has just flown by.

Yesterday was October 22nd - X-Day........exactly two years ago we received my sons diagnosis of Fragile X Syndrome.

I sat down yesterday a bit and just reflected on what the last 2 years has meant. I still remember that frantic first few hours of finding out about Fragile X and "googling" it and just the shock and fear I felt. I still remember those first few months just not knowing what to do and just walking around day after day lost and confused.

We've come along way since then. Attended our first Fragile X International Conference, got involved with the Fragile X Association of Michigan, became a board member of FXAM and now a member of the Public Policy Committee for NFXF. Assisting in hosting the 12th International Conference in Dearborn, Michigan and attended my first FX Advocacy Day this year. Fragile X is a part of our lives - and we are not going to let it be a negative. We are going to fight everyday not just for our son but for all the children and adults who are facing this disease.

Everyday I am inspired. Hayden has come so far this year. In January we were really struggling to get even a few words - and today, he is just constantly talking. I can't tell you how many times a tear has come to my eye when I've heard a new word. His school, private speech classes, and therapy camps were just unbelievable this year. We still have some speech struggles - certain letters or sounds - but to hear your child say Momma & Dadda......I just can't think of a better sound.

Just a few weeks ago we went to Chicago to meet with a FX specialist - Dr Berry-Kravitz. The short of the appointment is that Hayden is developing right along the same lines as most children with Fragile X. He is ahead in some areas and behind in others but all-in-all she doesn't see any major areas to be concerned about. We also recently were at a fund raiser with Dr Paul Hagerman - another expert in FX - and he was very hopefuly on new therapies and drugs in the next 3 - 5 years. These are my heroes - these are the people who have dedicated their lives and research to helping others.

The biggest change in our lives, however, is going to happen at the end of March 2010. That is when we will be leaving Michigan and moving to San Antonio, Texas. As part of some changes at my company I was asked if I would be willing to relocate. After much (MUCH) discussion and consideration - we both thought for the betterment of my career, the potential opportunity for our family, and lets face it, here in Michigan, the opportunity to keep my job - this was probably something we should do. We've been to SA once to see the town, look at houses, see some schools - and we were very impressed. It's a beautiful place and has lots to offer not just for me and Tina, but for Hayden too.

We still have some things to work out - final place to live, school, stuff like that. Heading down there another time to look around again and try to finalize some things. One place that we found that is amazing is a theme park that is being built called Morgans Wonderland. This is the first theme park strictly dedicated to individuals with disabilities. Its motto is "A special place for our special friends". Opens early 2010 - so how perfect is that.

So needless to say the next 8 months or so is going to be crazy busy. Holidays, travel, and just the day-to day business that we already have. But I can't complain - life has blessed me with a beautiful and wonderful wife who is just the most amazing person I've ever met. With a son who I just can't put into words how much I love and who everyday inspires me.

Life is good.

God Bless.