Home again...

Finally home with both kids. :)  Hubby and I have been in Miami with a thousand or so of our best friends - mostly other families with fragile x syndrome, but also the experts(doctors, therapists, researchers, etc).   I have to say first how immensely grateful I am to have such fantastic family who really step up when we go to conferences.  To make it easier and more fun for everybody, we split up the kids.  Like most siblings, they fight.  A LOT.  So a week apart is a very good thing and makes it much more pleasant for everybody.  So she went one way and he another and everybody seems to have had a grand time. 
The International Fragile X Conference is about 5 days of sessions covering just about every possible thing you want to know about FXS.  The latest research and clinical trials, the speech and occupational therapy discussions, sessions on the related disorders that cause tremors and ataxia or early menopause, behavior, toilet training, sibling issues, special needs trusts, fundraising, advocacy, and much more.  My favorite part though is always the friends.  I have made some very dear friends at prior conferences and we usually only manage to see each other every two years at this event, so catching up with them is great fun, and I always meet new friends also, and I know I will look forward to seeing them in 2014. 
Speaking of 2014, the next conference?  Orange County, CA.   Yep.  And of course I have already been looking online at the hotel - it's only blocks from Disneyland.   Eeeeeeeek!   I've already been researching what airport to fly into and looking to see if there are direct flights and debating about bringing my kids/not bringing my kids.  I'm not sure my kids would forgive me if I didn't bring them.  Anyway...we've got a year and a half or so to make that decision, so I'm going to try to set it aside for a while. 
So, first I need to work on putting into practice what I've learned.  First order of business - potty training.  Yep, he's 9, but we are still not there, and clearly what we are doing isn't working.  After the potty training session, I spoke to one of the presenters, told her a bit of our issues, and she said she would work with me to find a better plan.  So for now, I'm to log everything for 2 weeks, email it to her, and we will go from there.  If we can't figure it out by email or phone, she will travel to Birmingham and work with me.  Yay - I found my potty training miracle worker(I hope)!  I don't know what it will cost me, but really the laundry and the pull ups are pretty expensive too.  So we have a plan to address that issue. 
Next will be dealing with the anxiety and aggression, trying to discipline myself to make picture schedules and other things to make his world make more sense.  Fine motor issues are another thing we need to work on, and I've got some more strategies for that. 
Our local group has some new ideas and plans for fundraising, awareness, and social events that I'm pretty excited about.  We are hoping and planning to bring some of the awesome experts here sometime soon.  Lots to do and plan... 
For now - back to real life!

Anticipation...

Hmmmm....so I haven't posted anything in a reeeeally long time.  Guess I haven't had a lot to say.  Or more likely just haven't taken the time to type it.  Anyway...I am just about giddy with anticipation.  Today is laundry and errands in prep for the coming week.  Tomorrow is church and then we have a fragile X awareness event at the local minor league baseball game.  Hoping to meet a few more families from our area there and spread a little awareness also. 
Monday, Lindsey and I, and I think my friend Beth and her daughter are going for mother daughter mani-pedis - Beth and I have to have cute toes for Miami, right?  Monday afternoon Tim and I take the kids to the family that will be taking care of them while we head to Miami for the fragile X conference on Tuesday.  And the conference is the reason I am giddy.  More accurately, the people who will be at the conference are the reason.  At our first conference in 2006 in Atlanta, we met Matt and Beth, who live very nearby, have kids close to our kids ages, and have become like family.  Also in Atlanta, Tim and I were walking to a Ruth's Chris one night during the conference and met Kristie, Eric, Kelly, and Tony. They kindly invited us to share a table with them, and they became instant friends of ours who we wish we could see more than once every two years.  We meet new people every time we go, and so we look forward to seeing many old friends, and we know that we will meet new ones also on this trip.  I look forward to the time with friends even more than the sessions - and I really do look forward to the sessions. 
Like many in the FX world, social anxiety is a challenge, but at conference, at least for me, that becomes so much easier. Surrounded by people who know and understand and live fragile X, I feel like I'm home.  Not having to explain "fragile what?" to anybody is wonderful.  And as somebody (Arlene maybe?) said on the getting ready for conference podcast said - I can take off my armor.  That is such a wonderful description of how conference feels to me.  Surrounded by people who understand me, understand my kids, who aren't shocked by stories of the bizarreness that sometimes happens in my world, who have stories equally bizarre and uncannily similar - people who "get it" - it's just one of my favorite things.  And so I look forward to that feeling, and I know I will meet lots of new friends, and I will want to take them all home with me.  Ok, maybe most of them.  ;)

Thankfulness

1 Thessalonians 5:18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.

So Thanksgiving is tomorrow and I haven't posted anything in quite some time, but here I am...and feeling thankful. Yes, Fragile X is still causing it's share of havoc in our family, but we are blessed to have 2 healthy children. Tim has a good job that he enjoys and he is able to support our family and allow me to stay home. We have a stable, loving marriage. We don't have any crazy meddling in-laws or Jerry Springer dramas(not in the immediate family, anyway!). Our kids have caring, dedicated teachers, and we are blessed with great friends. All in all, much to be thankful for. Most of all for God and his Son, Jesus, we are thankful.

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. John 3:16

Bullies

Oh, let's see....where do I start? Generally Justin seems to be very popular among his classmates. They argue over who will sit next to him at lunch and who will hold his hand on the stairs. The kids in his class are all very sweet to him. Last Thursday, I was there for their fundraiser Fun Run. The kids were all running laps and the teachers are all at the start/finish line marking their t-shirts at each lap. So just past the start/finish all the teachers backs are turned and I see a kid from another kindergarten class run up behind J, grab the back of his shirt, jerk him to the ground, and then take off running. I was in shock. And torn between checking on my child and chasing the other one down. Of course I had to go check on J, and he just dusted himself off, smiled, and went on. By then I lost track of the other kid (they were all wearing the same shirt, and I only saw the back of his head). I didn't say anything about it at the time because I couldn't identify who did it, and Justin wasn't upset.
So this week I got this note from his teacher "Last Thursday, at free play, we had a little incident. Justin went down the slide and there was a child at the bottom of the slide- Justin kicked the child to get him to move. The boy preceded to try and hit Justin back. Of course Justin did not know any better so he started swinging at the child and anyone around him. I calmed both of the children down and talked to the little boy who tried to hit Justin back. I let him know that it was not okay for Justin to hit him, but sometimes Justin just acts. I also told him that he should NEVER hit a child back if they kick or hit him. The child was told to come tell an adult if Justin put his hands or feet on him again. I found out today that the very same incident happened at P.E. yesterday. One of the aides told me that it was with the same child. She told me that she did not know who started the hitting, and I let her know that I talked with that child and he knew that if Justin put his hands on him to go tell and adult and not hit back."
Free play would have been in the afternoon after the fun run, but I wonder if J and this kid have had prior incidents that the teachers didn't notice or report. So anyway, I did go to school & tell the teacher about what I saw at the fun run and she is going to talk to him and see if it might be related. I just can't imagine why a kid in another class would choose to target J as it seemed he did during the fun run.


And on the other end, Justin can also be a bully. We had a younger boy (also with FX) over to play one afternoon this week and J did NOT want him playing with his toys, and kept taking things away from him and shoving him. He only does this when he feels like something is 'his', not at school, but it's definitely something we have to work on so we can have friends over to play.

Haven't posted in quite a while. I've been meaning to, but it's hard to make myself do it at times. I went through a valley a few weeks ago worse than the initial diagnosis. I guess we had a few particularly bad meltdowns, and the realization that he's only 5, and the fear that it could get a LOT worse. I dunno, but I spent the better part of a week feeling that I could burst into tears at any moment and did a few times. That is very much not like me...I cry over sappy movies, yes, but real life very rarely. I finally told my Sunday School class, asked for prayer, and began feeling better the next day. So anyway....I'm finding myself praying more, and feeling more optimistic.

Every time I go to school either a teacher, an aide, the nurse...somebody, always stops me to tell me how much they love Justin. "He just smiles all the time", "he's the happiest kid I know", "he just lights up my day", etc... one even told me "everyone should have a child like him". I am thankful beyond measure for this - he obviously saves his worst behavior for me. I suppose that is a good thing, but it also wears on me emotionally that they get so much of the loving, happy Justin, and I get that mixed with outbursts of angry, violent, wild Justin. If only I could keep him the loving, happy, smiley boy all the time......

Facebook has taken over my life

Well, I wasn't very good at blogging before, but now I'm never here at all! Facebook has taken control of my computer...

Anyway, what's new...well, Justin is just gradually getting more and more aggressive and I had a bit of an emotional breakdown about it a few days ago. I'm better at the moment and working on a plan to try to get that under control. We are journaling everything, trying to identify triggers, searching for a behavioral therapist, and trying to get another appt with the neuro to discuss meds. We appreciate all of your prayers.

Most of Birmingham is abuzz with the possibility of snow next Monday/Tuesday. Lindsey is now nine and she has seen snow twice in her life and both were maybe half an inch. So snow is a big deal - I hate it, though. Anyway, I have to go buy carrots today just in case we need a snowman nose. :)

And it sneaks up on me again!

Every year Lindsey's birthday does this to me. I always say I'm going to plan ahead, but then Christmas gets chaotic, and then we are just trying to recover from the chaos and get through New year's, and then it's time to take down the decorations, and suddenly Lindsey's birthday party is this Saturday and I've not sent out one single invitation.
I tried to get her to have it at one of the pottery painting places, so I don't have to deal with the mess and clean up, etc, but she wants to have it at home again. She just wants a very few friends and family, thankfully.
So anyway...I guess I've got to get invites mailed out today. I so wish her birthday was maybe a week or 2 later so it wouldn't do this to me every year. But given how miserably large I was, and the fact that she was over 10 pounds, I don't think I could have survived being pregnant much longer anyway.
I think I had more to type, but suddenly J is here 'helping' me, telling me to 'push the green button'....