Tuesday, August 28, 2012

Bad Days

Bad days, everyone has them right? Well it seems "Fragile X Bad days" are in a class all their own! And today was one of those days!

It seems like we can have 5 wonderful days then one day of meltdowns, crying, and fighting and it seems to take another 5 days to recover from that one bad day. Today was a "I'm not going to do anything you want me to" days. So, of course now that we're home and he has calmed down I start going back through the day to see "why".

I know that there is only so much I can control in life. There will be things that come up that I can do nothing about regardless of the amount of planning that I try to do. But, I also know that my overlooking or forgetting of one simple or big thing can cause a cascade fall of emotions and meltdowns for him.

One big issue right now for Dalton is that he has discovered the word "NO" and that he can say that for certain things and he doesn't have to do it. However, he has yet to understand that he doesn't always get a choice. This is how much of our conversations went today ME: Dalton put your seat belt on and leave it on. Dalton: NO! Me: YES! Dalton: YES, NO!


Psalm 144:1-2
Blessed be the Lord my strength, which teacheth my hands to war, and my fingers to fight: My goodness, and my fortress; my high tower, and my deliverer; my shield, and he in whom I trust; who subdueth my people under me.

Friday, August 24, 2012

Service Dogs

First off, this is off the subject of what the rest of my writing will be about today BUT Dalton let me cut his hair without a fight. No fighting, screaming, and no one holding him down tonight. I'm was excited and proud I could have cried! Just had to share!

Charlie and I have been debating getting a service dog for Dalton. For multiple different reasons. I have looked into multiple companies that all say they are the best to get a dog from of course. But man oh man are they expensive! $13,000 is about the average cost. It's crazy.

We have been discussing the pros and cons. The most important pro for me is to help Dalton not run when we go out in public because at his age he would be tethered to dog by a belt sort of thing and also there are "amazing" stories on many different websites of how the dogs have helped calm children down and given them a friend when it's very difficult for them to make friends with other humans. Of course the cons is the up keep of a dog, another mouth to feed, and most importantly for me cleaning up the hair inside of my house.

So, to me most of the cons that we have came up with are selfish "it's going to take more effort are our part" cons. I know that we will have to do tons of fundraising and probably have to wait for a while to get a service dog for him but I think we are going to attempt it none the less. If the dog can help in any of the areas it is supposed to be trained for it's worth a try!

Isaiah 41:10 NKJV
Fear not, for I am with you;
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with My righteous right hand.’


Wednesday, August 8, 2012


I enjoyed myself so much at the conference in Miami. I loved getting to meet families who deal with the same struggles as we do each and everyday. It's great to have a group on Facebook to connect with people but to be able to share a meal with someone and talk about your children and for them to just "get it" is indescribably wonderful.
On an everyday basis in our community when we are out and about with Dalton when he is having a bad day or just a momentary meltdown we get "the look." I know that most parents in general but especially any parent with a special needs child knows what I'm talking about. It's the "your child doesn't look different than other children so he must just be a brat" look. But at the Conference it was different. Rooms full of people that understood and knew the feelings that a simple look can bring on.

We learned tons of things from our sessions as well. I loved the sessions with Mouse and Tracy and my favorite was one with Cindi Rogers. I came home with lots of ideas and new strategies to try. It's just a matter of doing them now!

Philippians 4:19 NKJV
And my God shall supply all your need according to His riches in glory by Christ Jesus.