Friday, May 3, 2013
Haircuts were another battle I didn't think we would ever win. Somewhere around 3 years old we could no longer hold him still enough for a haircut - they would be afraid to try to cut his hair because he flailed and hit so much. So for a few years we would take him to the basement, strap him into an old carseat and buzzcut him, while he screamed. This always ended with all three of us covered head to toe in sweat, tears, snot, and hair - not a fun experience. Eventually we tried the salon again(I told him he needed a haircut and we could do the basement/carseat thing or he could try to behave at the solon, his choice)- he didn't like either option, but with a reward of a dinner out, he did it. For a while I had to stand right by him and occasionally help him hold his head and hands still, and give constant reminders. Yesterday, he got a haircut - and I just sat in a chair and waited. So much progress! There was a time I couldn't imagine him doing this but here we are. :-)
Anyway, it just really hit me last night as I brushed his teeth and looked at his sweet smile and his fresh haircut that these two were such huge hurdles, how hard we had to work to make these two routines possible, but now they are, and again I desperately wish I could talk to that younger me and tell her that he will get there. Yes, it is a long and sometimes painful process, but he will get there. And since I can't have a time machine and talk to that younger me, maybe I can give a little hope to the younger moms, and maybe I can give a little hope to myself for the road ahead.
We still have a long way to go in a lot of other areas, but knowing that we managed these things that seemed impossible to us not long ago, gives me the courage to continue facing more impossible things, knowing that we have overcome these impossible hurdles already.
Thursday, November 22, 2012
1. So first, I am thankful for God, the source of all of our blessings and our creator and savior.
2. My parents, who I'm blessed to still have with me, and who are still happily married after 53 years. They have become dear friends, and precious allies, who I know would still walk though fire for any of us.
3. My husband, who still manages to love me in spite of my many, many flaws. He is an amazing, loving, silly, wonderful dad to our kids. He works incredibly hard to provide for our family. And he doesn't roll his eyes(much) when I scream for him to come kill a bug.
4. My daughter, Lindsey, who is still my princess girly-girl, who still fills my world with all things sparkly and pink. She is quiet, thoughtful, sweet, and loving, and I couldn't be prouder of her. Even when she is angry with her brother(almost hourly), she still adores him, and would do anything for him.
5. Which brings me to Justin, who introduced us all to the world of Fragile X Syndrome. How boring would my life be without this one? He is hilarious, sweet, loving, occasionally really exasperating, but a joy every day. He teaches me patience every day. He teaches me to throw out the standard parenting books, and constantly be on my toes. He teaches me to pray. And he has brought a whole new assortment of amazing friends into my life.
6. I am thankful for other parents of kids with FXS. It is a great blessing having people who truly relate, and who I can share all of the craziness of this with. They laugh with me, pray with me, cheer for his accomplishments, and give me new ideas and inspiration daily. Thanks for sharing this journey with me.
7. I cant leave out all of my other friends - I am blessed with great friends from throughout my life. I've always struggled with shyness, social anxiety, and well, just always thought I was just a little too weird, for lack of a better word. But somehow, certain people have come into my life, who seem to overlook my flaws (or maybe they are just a little weird too? LOL) - anyway, I'm thankful for each of you, and for the love, encouragement, and laughter you bring to my life.
8. My in-laws - you don't have to look far(especially today) to find people complaining about their crazy, mean, horrific in-laws. I am blessed that I truly love and get along well with all of my husband's family. I couldn't ask to have married into a better family.
9. My own extended family. My grandparents are no longer with us, but I am thankful to have had them in my life for as long as I did. I was blessed with only a few first-cousins and aunts and uncles, but more second-cousins, and great-aunts and uncles than I can count on my dad's side. I am thankful for the yearly reunions, and times in-between, and for the rich heritage of my Young and Thomas families. My mom's family is mostly unknown to me, but I am thankful to them, for raising an amazing woman - they must have done something just right.
10. Knowing so many who are struggling financially, or out of work, I have to be thankful for my husband's job. He gets to do something he enjoys, with people he likes, and provide well for our family in doing so. His job has allowed me to continue being a stay-at-home mom, which I love and am grateful for.
11. The doctors, researchers, therapists, and other experts, who are devoting so much of their professional lives to FXS. They are constantly searching for new treaments, new therapies, to enrich the lives of those with FXS, and those who care for them.
12. Great teachers. My kids have been blessed with many outstanding teachers, who love and encourage them, who take the time to understand their learning styles, who continue to ask about them even years later. You know who you are, and I hope you know I adore you.
13. My country. Even with the many things currently wrong with our country, I still can't imagine living anywhere else. I am so very thankful for the freedoms we have and for the men and women who have served to secure those freedoms and to protect our nation and people.
14. My church family. We are blessed with great friends, great music, solid teaching, beautiful worship, many missions opportunities, and a fantasically helpful special needs ministry.
15. My brothers. Scott, who taught us about FXS before we knew what it was called, is still as funny and sweet and cantankerous as ever. And Mark, who is now in remission from Lymphoma, and I pray he will stay that way.
16. I'm thankful for those who will share a table with me today, and I pray safe travels for each of them. I'm looking forward to the fun and laughter even more than the food (and you know I'm looking forward to the food!).
I guess I will break here and go get started with the day, but I'm sure I will be back with more.
I'm thankful to have so much to be thankful for.
Monday, July 30, 2012
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!
Saturday, July 21, 2012
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. ;)
Wednesday, November 25, 2009
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
Friday, March 6, 2009
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.
Monday, February 23, 2009
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......