I have found myself shying away from writing probably for more than one reason… I can tell myself “I don’t have time”, but reality is we make time for what we want to do.
I don’t know what to say might be more accurate.
Or, I am so burnt out by the end of the day I don’t have the energy to write about it.
Or, I am so afraid I don’t want to put it into print because the truth is rather painful.
Or, I am fearful of being mis-understood… or mis-representing… or just plain being wrong.
Because with my youngest, I am on a learning curve every day. Learning about special needs & FAES… things I’ve never been exposed to on a personal level… things that frighten me & discourage me… and keep the future looking very uncertain.
Since the last time I wrote about Kiahna, she has improved in her behaviors dramatically.
I am extremely thankful.
But.
I have been told that I should “enjoy the good days, because history shows that when you have FAS the medications work for a time and then quit working”
The day that Kiahna got the flu, we also began a new medication. It was secondary to the one she was already on for ADHD.
ADHD medications have made her act out more violently…
So, we added a “mood stabilizer” to her ADHD med.
When she got the flu, we had a full week of her being very, very docile & sweet. It was heavenly. You have no idea.
As she recovered from the flu & her energy returned, we began to see that her behavior was improved.
The past week of school has went much better than any time before for her. The teacher reports that she is blending with the other kids & that she is not disrupting the classroom, and other positive things like that.
For me she has done much much better, but when I tried to take her into a store this past week the “overstimulation” was apparent quickly…and we ended up having a stand off before we could get her back home again.
I feel like I let down my guard & began to feel relaxed about her behavior & tried to do something “normal” with her along & got kicked in the gut.
Then we go to the cycle of my fear creating her fear & escalating her behaviors… Jadon escalates her behaviors, they feed off of each other & reactions can get ugly quick.
I am extremely thankful things are going better at school… things are better, but the condition isn’t going anywhere… & we have a long road ahead… which is overwhelming so I’ll just look at the step we need to make today.
In April we need to re-write her IEP. I have been in touch with another parent who has 2 FAS children & she is going to help write it up & be our advocate.
I feel like with this improved behavior the temptation might be to overlook many things that the IEP needs to contain… so we have to put in place what we do when she grows & the medication stops working… very,very hard to think about for me.
Moving forward onto today… when I will take her to church & pray she doesn’t have a tantrum… and I’ll take her to my parents & pray that she doesn’t melt down or hurt any of the kids… and I’ll hope to have enough left to ask her to go sit and listen to the swing choir sing tonight… It’s a lot to ask of her… but it’s our life…and I am not sure what else to do.
Pam