Meet Tyler

This is Tyler.....

Tyler is our baby, he is 6yrs old. He also has FXS, Autism, ADHD and Anxiety issues. He is by far our most social out of our three with FXS and the most mischievous. He is able to use single words to communicate (no sentences yet) and points to what he wants. Like my other two he gets very upset when the routine changes or there are large groups pf people. He has never really been aggressive, other than trying to bite my hand when he wants to get out of a situation he is afraid of, but on the downside he will hurt himself. Headbanging is one thing I never quite adjusted to. I always hated to see him do it. He has a helmet which we use if he starts. The one time I will never forget is we were out on the sidewalk and he got upset about something and he just dropped to the ground and smacked it, no warning, just bam! At that point I wished he would have just hit me. Enough of the sad stuff now on to the cute stuff.
Ty is just too adorable. He has this smile that you just can't say no to. He is a ladies man too. He loves to flirt with all the pretty girls he sees. He loves to give hugs and he loves to play games (Temple Run right now). The ways he says some words just makes me crack up, we call it Tyler Speak. He loves to play in dirt and with cars and break stuff (just like any other boy does). Oh and noise, he will make as much of it as he can!!!!!!! He likes to be the center of attention (what kid doesn't). He loves to swing too. Ty is pretty much one of the cutest kids ever. ;) Then again I am a little bias.

Meet Nathan

This is Nathan....

Nathan is our oldest at 13. He too has FXS along with ADHD and anxiety issues. He was diagnosed at the age of 4. This was after 3 years of thinking something wasn't right but being told he would eventually catch up. Nathan is our highest functioning of our 3 with FXS. That wasn't always the case though. When he was younger he was non-verbal. I don't think he spoke a single word until he was five. Potty training took a year. I remember the aide and I holding his arms and legs and carrying him across the street just to get him on the bus. The meltdowns in the stores were horrible. Everyone stared. He hated the car, he hated to sleep, he hated any change at all. I was one of those parents that said that I would never put my child on medicine. After his kindergarten year and a long talk with teachers and doctors we decided to try medication. It took a while but we saw improvement. We started to see Nathan. Here is my favorite part.....
Now 8yrs later, Nathan has gone to an overnight camp (huge deal), he can carry on short conversations, he has a great sense of humor, he is in charge all the time of everything (he does all kinds of work because no one else does it right), he is typing, he works electronics better than I do, he has sang twice on stage in the choir, he has his group of guys at school who hang out with him (that still makes me cry) and he has gone roller skating. (there is a lot more but that would take months to write)
Now I may have been cursed out a few times and so have his teachers and he may like to argue with me and tell me I am boring and a baby and that I need to leave him alone but he is one amazing young man!

 

Meet Haley

This is Haley....

Haley is now 7yrs old. (I think she was 5 in this picture). She is adorable. Haley is by far our most affected child with FXS. Her "official" diagnosis reads as follows; FXS, Autism, ADHD, Mood Disorder NOS, Anxiety Disorder NOS. She is completely non-verbal and uses a combination of sign and a speech output device to communicate. (and I have become quite the telepath when it comes to her) She eats only pureed food (for some reason she stopped chewing and we don't know why). She is also pretty aggressive. As with any of my kids I am used to meltdowns and such but she takes it to a whole new level. I equate it to cage fighting without the cage. (hard to believe with that pretty face I know) There have been many unprovoked attacks in my house because of unknown triggers or even known triggers that Haley has started. There have been two inpatient stays in the psych unit to figure out meds and several trips by squad to the hospital just to get her under control. Not an overly pleasant experience. I have been hit, kicked, bitten, head-butted, bruised, hair pulled, shoved, clothes ripped etc. Needless to say taking her out is difficult. Let alone the staring. (I won't start on that one) Now that is all the stuff I don't like talking about, here is the stuff I love talking about.......
Haley has the greatest smile and laugh. She has a great sense of humor. She loves the water and loves to swim. Her all time favorite thing is music. The louder the better. She loves to listen to P!nk. She likes to watch lights and fireworks. She loves to be tickled.  Swinging outside and rocking in her chair with her weighted blanket are fun. She craves attention, she doesn't like to be held but wants you to watch her all the time. She is totally a little performer. She is incredibly intelligent (I know there is so much locked up in her head I just wish I could get it out). I know she has her issues and I know she can be difficult to deal with but she is just one of those kids you can't help but love.

 

 

Is there life out there?

Ok so this starts off with a funny story. I needed summer clothes. I went to Walmart to get some. I started to walk through the women's section (not the old peoples part as Serenity calls it) and I had to just stop and stand there. I looked around and realized that I had absolutely no clue what or how to wear most of the stuff that was out on the floor. Besides t-shirts and whatever pants or jeans I have that the kids haven't ruined yet I have no clue what fashion is anymore. So I did what any normal person would do I bought black and grey shirts and shorts and left. Despite what my husband says I am by no means old (31 is not old!). I am technology savvy and that is probably because we never really leave the house, especially in the summer. I will let you use your imagination as to what it would be like taking all 4 of them anywhere without help (kind of like WWE without the the ring). We have all kinds of games and computers and smartphones and tablets since we are stuck here pretty much most of the time, other than that I realized I have no clue what is going on in the "outside world". Sure you ask me anything related to FXS, Autism, IEP's, MFE's, Behavior Plans or anything else concerning the kids I am all over it, anything else though I am at a loss. Now this is where some people jump in and say now you know you have to take time for yourself and you have to take a break and you need some you time. Yes I know I am well aware of that but it is also easier said than done. I am also not my top priority my kiddos are so I guess the trick is and what I am still trying to figure out is how to balance it all. I may never figure it out. I may always wear out of date clothes and have my hair pulled up because I don't have any time to do it. I don't really go out late or "party" anymore. I know a lot of special needs mom's can relate to this, the problem I have is trying to explain it to anyone who doesn't have a special needs child. There is always this kind of pretend invisible barrier there that I just don't know how to break through. (I don't know if that makes any kind of sense but it does in my head) I wish I could make like a special needs boot camp so people could see what it is really like to live this every day. (sorry kind of off topic) Being a parent of special needs children can be very lonely sometimes. I have friends, many on facebook, some around me with special needs children of their own and it is still lonely some days. (kind of like screaming in a crowded room but no one hears you) I know that things won't be this way forever. Maybe one day we may be able to go to the beach or fly on a plane or I may even figure out how to wear clothes!!!!

A day in the life

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

I don't know how...You have your....You must...Don't you....You need......

Let me start off by saying that I am a brutally honest person and I guess this is kind of my disclaimer. What is written here are my feelings and opinions and only mine. It is not meant to offend anyone, make anyone mad etc etc. Now that I have said that:

Ok so having a special needs child isn't easy (3 makes it a little harder). Having children isn't easy. Well when we go somewhere like to the school or a store or Serenity has friends over I usually end up explaining our story. Granted I do not mind educating people, I like it, its the response I get after that tends to irritate me some:
        I don't know how you do it!- Ummmm well the answer to that is pretty simple. I don't have a choice. Besides my husband nobody can do my job so its not like I can pack my bags and hide under a rock (some days I would love to do that). Just to get out for a few hours requires at least a weeks notice. Please don't get me wrong I LOVE my children but like I said this job is not easy (unless you enjoy scrubbing poop off various surfaces and being hit and kicked a lot plus training in speech and OT helps too). Most days I don't want to do it! (no I am not a horrible mom this is the brutal honest part) No person enjoys being hit or screamed at or likes being stressed constantly. It isn't enjoyable. Its a ton of work and there is just one of me. So there are some days I just want to lay in bed and not get up because I know whats coming, but I get up and do it anyway because that is what I have to do.
         You have your hands full!- Pardon my language here, no s$%&! Yes they are very full. There is a reason I get a migraine pretty much everyday. I have become quite efficient at juggling 20 different things at once. I have pretty much everything for the kids memorized just because its easier that way. Oh and housework, I hate housework. I didn't used to until a little tornado named Ty who could destroy a house in 5 minutes. I can not clean fast enough but if I don't clean he eats weird stuff (I will spare the details). I need about 10 of me to do all of this efficiently!
       You must have a lot of patience!- No, no I don't. I wish I could say I did but honestly no. I do not have anymore than any other person. I get just as frustrated as anyone else would. I am impatient (ask my husband), I want them to do everything right now! No matter how much I want it though its not going to happen. So I stay frustrated and angry (yes I am angry and I am probably going to stay angry about it that is the stage I am still at).
       Don't you have help?!- Very little. This actually really surprises people. Their Aunt is our main source of help (she has 3 small children of her own that makes 7 in my house then) but thats about it. It took us 2yrs to find a home health aide for Haley that is here for 3hrs a day 4 days a week. Thats it. Other than that we don't have help. Our state offers very very little (pretty much nothing) as far as that goes. I don't think people understand how difficult it can be to get help. I can't just ask a 13yr old to watch my kids so we can go party. It has to be someone my kids know and who know my kids. When we went to Chicago a week ago that was the first time we had been anywhere in 9yrs. First time for me in 13yrs (and figuring drive time we stayed for 1 full day). It is very hard to explain this to someone who doesn't have kids though let alone special needs kids.
       Sounds like you need a break!- I would love one! Know anyone qualified to give me a break every week because I don't. I would love some time with my husband and friends that didn't require extensive planning on my part. Yes I am burnt out, I am beyond burnt out. (I don't know what term there is for that if you do let me know) I want to sit and read without Ty grabbing my Kindle to play Temple Run, watch a tv show without Haley asking for 50 different things to eat or drink, pee in peace!!!! Those things are not going to happen anytime soon I don't think.

So if you know a special needs mom out there and she is having a rough time offer your time. Let her run some errands, eat a meal, pee in peace!!!!! Its the little things!!!

How did we get here.....

This is my first ever blog! I have to admit it is kind of scary putting yourself out there but anyway here goes nothing.
This is how our Fragile X story begins. I had my son Nathan 13yrs ago. He was perfect. Cranky but perfect. We didn't suspect anything was wrong until he was about a year old. Then his pediatrician sent me and my ex to a neurologist, his response was "Oh, he's just a boy he will grow out of it don't worry." Ummmmmm, ok. Another year goes by and he makes progress so we assume the doc was right. Somewhere around that time we decided to try and have miss Serenity. After she was born and Nathan was about 4 we went into the pediatrician's office with a list and demanded answers. It was then she finally agreed that there was more going on. About 8 weeks later we found out that Nathan had the full FXS mutation. Talk about a punch to the gut. I'm a control freak I will admit it. I do not like being blindsided and this one got me. I grieved for a long time. I use the word grieved because I can't think of a better word for what I felt at the time. We moved on, got therapy, special schooling and he improved. Unfortunately my marriage did not. After Nathan was diagnosed and after over a year and a half of trying we split. We had different ideas on how to help him and how to raise him I could go on and on. Ok so your wondering thats 2 kids so far and wait on facebook she's married and why the heck would she have more kids if she knew that there could be something wrong with them. Well yes I am married, I met my husband 9yrs ago and we have been married 7yrs. We have 2 children together and that makes 4. Now to answer the question I get asked a lot, why did I have more? Well it wasn't an easy decision. I always wanted lots of kids because I think I am crazy (I know I am crazy). Nathan was higher functioning so after talking a lot we thought we could handle 1 more, then came Haley. She was a little cranky as a baby but nothing like Nathan (that kid never slept ever). She wasn't behind in anything really the doctors told us she was fine. So me thinking 1 high functioning boy with FXS 2 girls who are fine lets play the odds again. (me and my big mouth) When Haley was 6 months old we tried for Ty. (yes they are close together and yes I know thats crazy too) This is where the story goes a little haywire. When Haley was 10 months old we started to notice a few things and I can't remember exactly what they were because my memory is shot now. I talked with Donnie and the doc and they thought I was looking for things but I insisted she be tested (should have done that from the start lesson learned). Several weeks later the test came back with the full mutation and another punch in my gut. What sucked more is I had found out a couple months before I was pregnant with Ty. I decided then Ty would be tested when he was born period and I would not tempt fate a 5th time. Needless to say when Ty was born his test also showed he had the full FXS mutation as well. I have to say that I wasn't surprised or I was numb by this point. Now fast forward to present day. Nathan is 13, Serenity is 10, Haley is 7 and Ty is 6. I never in a million years thought that I would have had to deal with the things I have had to deal with. What breaks my heart is the fact that I have to watch my babies go through it too and I can't make it better. I can only do damage control. Everyday is like the movie Groundhog Day where its the same thing over and over and over just to keep their routine the same so there are no meltdowns and they don't hurt themselves. Its exhausting both physically and mentally. They are just so darn cute though and when they come running up and throw their arms around me for no reason or give me a kiss out of the blue it makes everything worth it. I have no idea how well I did for my first blog entry but this is how we got here...