I try not to do a lot of posts when I am frustrated, since I strive to keep this about not about how I'm feeling day to day but about Ayden and Fragile X; however, I can't deny that those two things bring many frustrations for me (especially together). I'd been thinking about my next post here knowing I needed to update how Ayden was doing, and it just wasn't what I wanted.
I look back at the past month and see us with the same disciplinary issues we had a month ago, even two months ago. We're doing all the right things - being consistent, disciplining when necessary, being firm - but nothing has changed. In fact, I'd say it's gotten worse in some areas. I feel like I haven't been doing enough, like I need to focus more time on him and his needs. His behavior is telling me something, but I just don't know what and I feel...stuck. lost. hopeless. tired. overwhelmed.
I go through this with him every little while. This whole journey is definitely not peaches and cream, it has it ups and severe downs. I hit these downs and wonder where we go from here. Then I remember to take a step back and analyze because something isn't working how we want it. I remember that I can do this, that I am the best choice to do this. Most of all, I remember that he needs me and if I don't help him over these mountains then who will.
So...time to analyze. We have a couple behaviors that need to change.
1) Ayden is still pushing baby brother all. the. time. He has been doing this since Issac started walking, but it isn't everyday. I feel like it was better for a short time, then maybe got worse again this summer. Sometimes because Issac is in his way, but almost always there is no (apparent) rhyme or reason. The discipline has always been corner, then telling brother he is sorry (this is done with a hug and kiss). We attempted to switch these two corrective things around but found the corner to be less effective then. It's important to note Ayden does not push anyone else. Not mom, not dad, not kids at school. This behavior is specifically directed at brother and only occurs with brother. I think the correction to this problem lies not in modifying his behavior (I mean, that is quite obviously not working), but attempting to modify what is causing the behavior. Problem is, I have no clue. So, my first task is going to be identifying what is causing this behavior.
I am feeling a little better already. Sometimes it just helps to talk it through!
2) Our second behavior is a bit more difficult because sometimes it is related to his inability to communicate, but the behavior we want to change is when it is related to him just being, well, four. Ayden will stand there and whine for hours sometimes. Whine, cry, scream, flail...they all usually come together. I know when he gets frustrated and can't tell us what he wants these things occur. I see those instances occurring less often though as we progress farther into PECS with him and am beginning to know the difference between a tantrum from not getting his own way and a tantrum from being frustrated. It's much easier when kids can say "no" because at least you know exactly what they are saying no to and can act appropriately! I think our first step to this is consistently directing him to his PECS book when he whines, and making/teaching him new cards to help with emotions. I think after he can start identifying what he is feeling, it will be easier for me to say "I know you are upset that you can't do X, but you can't act like this when you are upset - do this instead." At that point, I will then know it is a tantrum and can discipline appropriately if needed. This whole process will teach him a) emotions and how to communicate them b) how to redirect his anger in an appropriate manner and c) the inappropriate manner of directing his anger towards others by whining and crying is not acceptable and will be punished.
Having a plan in place can be so helpful!
Our last stretch of summer it seems is going to be a lot of behavior modification, and of course more PECS. Both good things, and hopefully putting Ayden in a really good place for school starting next month. Really, he's already on Phase IV of PECS - when the goal was to have him completed with Phase IV by the end of the school year. I'm infinitely glad we have an IEP change coming up in October because hopefully he will have completed that goal by then!
I know this isn't an easy ride for us, or anyone dealing with FXS for that matter. We certainly have our bad days (and sometimes weeks) around here but the joy we receive is just so much more. I often stress over bad days, falling into bed at night mentally and physically exhausted just hoping tomorrow will be better. I'm so thankful on those days to have the support that I do because sometimes tomorrow isn't better. I've learned to bask in the good days though and take the bad ones as they come. They are inevitable, so it doesn't help to curl into the fetal position and try to escape (even as nice as it sounds!). Ayden has Fragile X, but I will not let it rule or ruin our lives. I will do what I can, we will fight and we will win.. Ayden will win....and that is what matters.