Wednesday, December 1, 2010

Potty Training Boot Camp!

Was a success.....Wahooo!!!

Hayden had an entire week off for Thanksgiving. For weeks I was planning on doing my own version of potty training boot camp. For years I've heard horror stories about training kids with Fragile X. How long it takes, how some twice Hayden's age are still not potty trained. I've taken classes at conferences, read books and grilled my FX friends whose kids are potty trained. I tried several times before with no luck at all. This time though I really felt like he was ready and if it was going to work I needed to make a complete commitment to it. He was waking up dry from naps. He was sometimes even dry when he would wake up in the morning. Then I started noticing his diapers would stay dry for long periods of time. We would have random success when we would occasionally sit him on the potty. We decided we were just going for it. Make the commitment and go for it and see what happens. Well Mike was gone the weekend before Thanksgiving so I was so not starting it then. Great Logic right except I started it on Monday when Mike was at work all day anyway. Well he was home at night so I wasn't doing it completely alone. I decided that if we were going to be successful I was going to have to devote all of my time to this. So basically for 5 straight days we did nothing, went nowhere and just potty trained. Can I just say how stressful and exhausting this is!! So armed with our dvd player, dry erase board (he loves to have someone write his name over and over again), and some peanut mm's (which I ate more than Hayden) I clipped a timer to my shirt and sat him every 15 minutes and would increase it if he eliminated in the potty or not.

Day 1 - Not one poo or pee made it into the potty - The clean up and laundry was constant.

Day 2 - I think we had one pee pee in the potty - again massive amount of clean up and wondering if he would ever get it and wondering if he even knew he was going?

Day 3 - First thing in the morning complete success both in the potty! Then we had serveral accidents but some success as well. (I figure nobody wants to read the words pee and poo over and over again so from here on out we will call it success)

Day 4 Success again first thing in the morning. At this point every morning we just sit him till be has multiple success in the potty! He also had success all day with only 1 accident. At this point we realized that he just wanted the dvd player all the time so we only would give it to him if he had success! Smart mommy and daddy...this worked great and made success much quicker!

You get the day 6 he was actually telling us he had to go and was very successful!

So our first true test came on Monday when he went back to school. Can I just say and I know none of you will be surprised by this....It took everything I had to not call and ask how it was going. Then when my little man walked down the hall in the the exact same outfit I put him in that morning I don't think I have ever been so proud in my life!!! I had to put my glasses on so they wouldn't see the tears. This is a complete joke cause I can't hide when I cry they knew!

Have we completely accomplished it?? Not yet!! But this is a big victory and I will take it. We'll see when we are out somewhere for long periods of time or when we get brave enough to keep him in underwear instead of a pull up for long car rides. He's not into having success in public toilets yet so that's going to be an obstacle we will have to over come.

Almost 6 years of diapers and we are done!!! (Well we still wear pull up at night)

I was watching a talk show and they had a famous lady on and she was talking about how we as mother's over praise our kids and its not healthy. Well I for one would rather over praise than under praise. To see the pride in his eyes when he accomplishes something and then looks at me and asks for a high-five..that is one of the greatest things in the world to me. So heck yea, You want a high five -here's two! You want a success song and dance here you go! You want to watch doodle bops over and over again - lets get on the bus! You want to watch Thomas the train in mommy's room - well bust my bumpers lets go!!! I am so proud of my little man and every single one of his accomplishments. He deserves praise for every one big and small because he has to work twice as hard.

This post is dedicated to all of my Fragile X mommies and daddies whose angels are not potty trained some much older than mine as well as those FX mommies and daddies who have potty trained your little ones. My prayers go out to you both! I know how difficult and frustrating it is.

Friday, October 22, 2010

"D" Day

Diagnosis day...

Three years ago today the bottom fell out of my world. I was faced with my biggest fear that my little man would not just out grow the delays. That he was always going to struggle. For the first time I heard the words Fragile X. As I reflect on the feeling of that day I can replay it as if I was watching a movie...exactly what happened I can still hear the phone ring. What followed that day were some of the darkest days of my life. The fear of what the diagnosis meant was enough to make me sick. The unbelievable sadness of watching my dreams for my child slip away. The guilt because I did this. It was my gene that caused this. The selfishness that I felt knowing I may not get to celebrate things like normal parents get to. All of my questions for the future that had no answers. Will he go to kindergarten when his friends do, will he play sports, will he go to dances, will he have a girlfriend, will he graduate, will he get married, will he ever know the sheer joy of being a parent, will I ever get to be a grandparent, will he be president. My anger directed at everyone and my faith how could this happen. We waited so long and dreamed so much for this precious little boy. It all felt so cruel. Nobody could say the right things. In those few months that followed we were just surviving there was no living. What a horrible place to be. I can still remember the moment I came out of the dark...I was sitting on the floor crying as I did everyday and Hayden came to me put his hand on my cheek and smiled at me. I could see the light in his eyes and sheer love in his soul. This was my little boy that I thought at one point I might never have. There was a time when I was told I would never be a mommy. What was I doing...I sure as heck wasn't being a very good mommy that I promised him and God I would be if only given the chance. I picked myself up from the ground dusted off and looked at the son. I knew that I had it in me to be what this little angel needed me to be. I was going to prove it. To myself, to that angel boy, to the doctors that seemed to have fewer answer than I did.

Three years later....

I look at how far we have come. How far that little boy has come. How hard he works. How much I push him. I am amazed at how much he loves me. It humbles me to know that in his eyes I am his world. I look at all the joy in my life and how blessed I am. I have one of God's true miracles. I have a little boy that I kiss every morning, pick up from school every day and put to bed and pray with every night. He says he loves me. He knows I'm his mommy. I have a husband who doesn't care that I have a defective gene that might never give him another child. I have that guy who is willing to help create support groups because I said I need one. I have that guy who want to create change to make the world a better place for our little man. I have that guy who holds me when I cry and most of the time has no idea why I am crying. I have that guy who thinks I am the best mommy our little boy could ever have even though in my own mind I fall really short. I have an amazing family who looks at my little man like there is nothing wrong. I have amazing friends some of which completely get it and some that never will. What more could one woman ask for? Ok maybe a cure! I pray for that, I hope for that, I advocate for that.

Do I still have dark moments...oh yea. But they are moments now not days or months like they used to be.

To my husband who shares all of my same fears but is strong enough to put them aside and hold me. You are my home, my safe place, my best friend. I love you with everything that is inside me. To all of my friends and family who have prayed, cried, been angry and confused with me over the last three years with all my heart I love you! To my sister who has on more than one occasion bit someones head off over that last three years for saying the "wrong" things about Hayden when I was to emotional to do it. Everyone should have a sister like you! So as I wipe my eyes and make a pledge to myself and to Hayden that I will not cry again today I can tell you that our future looks bright and sunny. The journey is hard and sometime painful but I know now that it doesn't last. Grey sky's will pass and the sun will come back about 2:45 every day!

From the bottom of my soul I thank all of you for the last three years of support!

Thursday, August 12, 2010

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 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 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!

Wednesday, August 11, 2010

Enough Said


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.”

Monday, May 24, 2010

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 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? 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

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

Monday, April 26, 2010

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 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

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...."


Tuesday, April 20, 2010

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.

ZoĆ«: 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!


Thursday, February 11, 2010

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

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