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!

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