Since losing the STX209 we’ve lost a lot. We’ve lost the ability to spontaneously change our plans for the day, we’ve lost the ability to take Caleb to large gatherings, we’ve lost the ability to take Caleb confidently out into public period. His anxiety is…I have no words for it.
What kills me is that he appears, to the general public, bratty and he’s not. He’s a really, really good kid. He’s just scared of the world right now. I hate it. I hate the looks when he yells because we have to stand in the check out line, I hate the looks when he cannot sit quietly at a restaurant while we wait for our food, I hate the looks when he cannot try on a fucking backpack for school without tears. I hate all of it. The fear I see in him tears at my heart every single day.
But I don’t want to talk about all that, because it makes me cry…it makes my head and my heart hurt. What I want to talk about is what we haven’t lost…we haven’t lost Caleb. He hasn’t lost his words. He is constrained by the anxiety, we’ll deal with that, but he’s not locked in the fragile X box. He has more words now than he did a month ago, a week ago, and his language is more appropriate to the situation.
Last week we went to Target, we do a lot of that these days because it’s Caleb’s favorite store and, hey, it’s TARGET…Mommy likes it too. When we reached the check out…
Cashier: Hi! How are you?
Caleb: Good, yourself?
Cashier: I’m good, thank you.
Then he helped Eric finish paying for the
random very important crap we’d bought. He had a conversation with a stranger! Wha?
Or this weekend when we went in the (surprise) Target dressing room trying desperately to find uniform shorts for the boy who has apparently SKIPPED size 10 pants and is borderline outgrowing size 12 (at least in the waist, his legs need to catch up!) Oy.
Caleb: This room, this one? (pointing at the very large handicapped dressing room)
Caleb: (Looking around) It’s a nice little room.
Me: (laughing) You like this room?
Caleb: It’s a nice totel (hotel) room!
(After trying on a pair of pants and 2 pairs of shorts that didn’t fit)
Caleb (to the woman collecting the numbers as I handed over all the clothes): Just can’t win.
Me: It sure feels like it, doesn’t it bud?
So he’s there, he’s with us and he’s keeping the words. That was our biggest fear and it was not realized. Now if we could just get the kid to leave the house willingly again, that would be super.
**I hope very much that this is the last of these posts. I’m tired of feeling bitter, angry and hopeless. I’m tired of feeling so very sad for him and for us. There is more to come, I know this. I want to be looking for it and not at what we’ve had to leave behind.**
25 thoughts on “What we haven’t lost.”
Awesome! Still waiting for words, one day, one day!
Parker has more words too and more anxiety (ugh that anxiety) but am with you, focusing on the positive the language ♥
Beautiful. Sad but wonderful too.
Leah Sugarman liked this on Facebook.
Nicole Grady liked this on Facebook.
Holly Usrey Roos liked this on Facebook.
Have I mentioned how much I love your blogs? I do. They are so open and raw and honest. I think that’s great that you can be so real about it all. He is a good boy. I’ve never met C but from his pics his video’s these blogs I get that. I. GET. THAT. I wish others would but I know it will take time or they may never ‘”get it” that’s a shame. I know in some ways how you feel. You are ahead of me at least somewhere along the way someone taught you some things to help him. I don’t have those (yet) mine just flips out and I have to figure out what I’ve done or what he needs to get it resolved. As for the language. That’s huge and I am happy he/you all still have that. Way to go C keep using it everyday every way that you can buddy!
Rory has more words now but the anxiety and aggression has increased. Caitlin’s anxiety has increased and she falls apart over small things.
Shante Sweeney liked this on Facebook.
Ashley Nuesse liked this on Facebook.
Lisa Wink Schultz liked this on Facebook.
Cara Zamelsky Capela liked this on Facebook.
Melanie Felix-Pena liked this on Facebook.
Leah Geisert liked this on Facebook.
Kathleen Slater liked this on Facebook.
Bonnie Stroupe liked this on Facebook.
I’m curious; would you trade words for less anxiety?
Hunter doesn’t talk (very few intelligible words) but his anxiety seems to have gotten better as he’s gotten older. Not sure if we’re just handling it better or if he’s outgrowing it. Anyhow, as you all started your journey in this trial I was jealous that Hunter couldn’t participate. Oh, how I long to hear him speak. But now that everyone is off or coming off STX209 and the anxiety is coming back (worse?), but the words appear to be staying…it makes me wonder if I would have preferred Hunter to be able to communicate more over being able to go out more.
Sonja M. Goedde-Lund liked this on Facebook.
Elizabeth Bourn liked this on Facebook.
I’ve heard that anxiety will often improve as kids finish with puberty, I’m hopeful that will be the case with Caleb too. I personally would not give up language for less anxiety, not at this point. It would be too frustrating for all of us, I think, and who knows what behavior we would see from increased frustration. If we have to walk a tightrope here, I’d rather deal with the known (anxiety) than the unknown (frustration.)
Robyn Sheldon liked this on Facebook.
we will deal with whatever frustrates our young man no matter what. IF grammy can help, you know you can count of us <3
Mary Crippen liked this on Facebook.
Patricia Wilson Griffiths liked this on Facebook.