I had a friend tell me that I should talk about what we go through every day. My first thought was well that would be kind of boring to most people that read this because they are my FXS peeps and they know all this already. Then I bounced it around a little more and decided what the heck maybe someone will read this and gain a better understand of FXS and do some research about it. Here is the website if you want to know more about FXS: www.fragilex.org!
Well our mornings start off the same way every day (ALWAYS), diapers changed, breakfast, meds and Haley usually demanding her morning bath and at least one meltdown over what food she wants to eat (she is completely nonverbal but does have a talker that speaks for her). While I put her in the tub Ty usually takes that time to throw his breakfast all over my living room (cereal and chips because thats what will get him to eat the cereal and at this point whatever it takes). So I walk out to a very happy Ty and a confetti chip sprinkled living room to which I usually just walk out of and pretend I didn't see until he is all done. I try and get the dishes done in a hurry while running between rooms to check on them and ignoring the food throwing and flooding that is taking place. Once the kitchen is done Haley comes in and usually demands (yes I say demands because anyone who knows Haley knows that she has got one heck of an attitude) a snack. Next comes the inevitable war of the ipads. Now I don't understand this because we have 2! One for Haley and one for Ty but they fight over the same one, constantly. This is where Nathan jumps in and tries to play for Ty so he can watch and then very sneakily tries to walk off with it when he has a kindle of his own. This is about the time Haley starts to get mad ans starts to hit Ty (yes this is an everyday thing and idk why) so I redirect her to her room with her ipad and her weighted blanket and she rocks and listens to music. Now back to the boys, Nathan gets his kindle, Ty gets the ipad and they go to separate corners and I start to clean up Ty's mess. Around this time princess Serenity has woken up and stumbled her way to the living room begging for food. By this time I am thinking ok I am ahead of the game now I am caught up things are clean kids are not fighting we are good to go. It is usually about this time everyday I could kick myself for thinking that because something goes wrong. The dog runs away, Haley comes running out of her room in a fit of rage for no reason, she throws a cat, 10yr old drama, Nathan curses me out for some reason, poop gets smeared on something you name it then its happened. Then I find whatever I can microwave and they eat lunch. Haley only eats pureed food so I feed her and I don't know if what Ty does is actually called eating but he uses both hands and just shovels it in he doesn't need utensils! Now my favorite part of the day NAP TIME!! Ty still actually sleeps, Haley doesn't but if she doesn't chill for an hour or so and listen to music and play on her ipad I won't get laundry or anything else done. So we put our "suits" on which are sleepers backwards so we can't play in poop and go night-night.
I spend the next couple hours doing laundry, cleaning, making calls, doing stuff outside and possibly eating and showering. Serenity and Nathan help and play outside if they can. Then it is time to get up. Ty of course wants chips (I should buy stock in Doritos), then Haley comes out in a great mood and hopefully with no poop on her (the kid is houdini we have tried everything to keep her clothes on the only suit we found they don't make now and I can't find anything like it we are trying a wrestling singlet now under the sleeper it slows her down but she can get it off too). Haley usually wants another bath or to swim, Ty starts throwing stuff down the stairs, Haley eventually starts running around the house wet and naked and Ty starts climbing on the kitchen table to grab the ceiling fan. Now I have to make dinner............ok what can I shove in the oven real quick or in the microwave or order and they deliver. This is usually the part of the day where Haley has a couple meltdowns. I hate them, I really do. She is very strong and very flexible and she can beat the crap out of me. The change in her meds has helped a lot but there are still some issues to be worked out. (thankfully no trips back to inpatient psych) Once they all eat and Haley loves to fight eating dinner for some reason then its Haley and Ty's bed time. Ty will ask to go to bed and we make sure his mattress is still ziptied to the frame (he loves to flip it all over the room and his dresser is still bolted to the wall since he has flipped that too) Haley likes to argue (Donnie said its because she is a woman). Once they are actually in bed for the night I clean everything back up (yes my living room is covered in chips again) and eat. This is when Nathan and Serenity and I can do stuff together. Nathan's triggers are much easier to pick up on than the younger ones so it makes it easier to stop his meltdowns before they start. (don't get me wrong he still has them when things change/ its too loud/too many people) At some point during the evening I usually get a migraine (neuro says they are from stress and nerve damage from the stress, Ya Think!) Thats when I take medicine and usually fall asleep. Believe it or not this is the shortened version. I don't know if this is exactly what my friend meant when she suggested this but this is what I came up with. I hope some of you reading this will go to www.fragilex.org to learn more.
Also VERY IMPORTANT a drug study that was proving to reduce the symptoms of Fragile X Syndrome was recently terminated due to funding termination. While my children were not in this study due to other meds they were taking their doctor and I had discussed putting Haley on it when it received FDA approval. With as aggressive as Haley is and all of her other issues I do not take the subject of medication lightly! Please if you have not already go to these three sites and sign the petitions and open letter to get the study back up and running. We have been waiting over 3yrs for this and now things are not looking good.
http://stx209stories.com/an-open-letter-regarding-stx209-to-dr-severin-schwan-roche-pharmaceuticals/
https://petitions.whitehouse.gov/petition/help-find-immediate-funds-keep-seaside-therapeutics-stx209arbaclofen-extension-active-while-fda/5mKKTvYb
http://www.change.org/petitions/sponsor-arbaclofen-stx-209-study-for-children-with-autism-and-fragile-x
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