Tuesday, August 27, 2013

My husband loves me but......

Now please before you read to much into that statement my husband and I have been together over 9yrs and been married 7. We have 4 children 3 with FXS and Autism and ADHD. He works 4 ten hour days and I stay home. We don't get out a lot, we don't get many breaks and we are both stressed beyond belief. That being said......

Here is the point I am at in our relationship, have you ever loved someone so much it hurt? I have and still do but I guess I am just to the point where I don't care anymore. I think he is in the same place too but doesn't want to admit it. I know he loves me but there is no emotion there, nothing, no response to anything but dismissal and anger. I know what the odds are for parents of children with special needs to stay together and they aren't high. It probably doesn't help that we have no "natural support system" that I keep hearing so much about. I know we are both still in love but we just don't get along. I know I have a lot of resentment, he has a lot of stress from work. I get tired of being home with the kids, he gets frustrated because he can't deal with them and handle them the way I do. I am constantly criticized by people around me for how I do things, he is not very hands on with things having to deal with the kids because it frustrates him easily. It is this never ending battle no one is going to win. Now don't get me wrong I can handle stress and lots of it, I have been doing it for years but there comes a point where your mind and body have had enough and I think I am slowly approaching my limit. I could handle the kids, and the housework, and schools and meetings and docs, and the migraines and back pain with random muscle spasms daily but not all at once, not anymore. (I really hope this means I am not old bc I am totally not old!!!!!)
The teachers and doctors are basically paid to be my team I can not force my husband to be on my team. He can do what he wants and most of the time it isn't what I want. I have a very bad habit of wanting to be right all the time. (I am usually right most of the time esp when it comes to the kids) Like most men though he won't admit it and he wants to do it his way. I try and do it his way but damn my stubborn personality and big mouth bc usually I can't do it and I argue and fight until I get my way. (huge flaw on my part) I guess this is the way I see myself, the house and kids are my job, I take my job incredibly seriously. I read, I research, I talk and network with lots of people to get the help the kids need. I do very little for myself. (when I walk in to walmart and I don't know how to wear most of the clothes in there you know you need to get out more) I think my husband feels I am just controlling, however that is not what I am trying to be, I have about 20 different balls in the air at any given time and to drop anyone of them would mean they all fall which is a disaster. I am just trying to keep the house running smoothly.
A thought that often pops into my head is what would happen if I died, or got seriously hurt? That thought terrifies me!!! I don't have an answer. No one can do what I do, not my husband, not anyone. I have to be invincible, literally superwoman. Try explaining that to your husband because I have tried and he says I am just way over reacting. (I am so totally not, you have to be prepared for situations like this just in case)
I know he loves me, I can see it in his face sometimes, but most of the time its all his "strictly business" face because he disagrees with me or doesn't want to listen to my "complaining". (face it men thats what women do, deal with it, you fart we complain seems fair to me) I know I am a very intense person but from my in my opinion in this line of work you have to be. No one is going to fight or advocate for your kids but you/me. I just don't know how we are ever going to figure out how to make the situation functional when we are both so stubborn, then again stranger things have happened.

*disclaimer: yes my husband has read this and yes it is being posted with his permission*

Sunday, August 4, 2013

One step forward, 10 steps back

While the trip to see Dr. Erickson was (I thought) a huge success, things have not been going well. Haley has regressed again. It seems like the millionth time we have gone through this. (I should get here we go again tattooed on me somewhere because that is my motto anymore) The med increase that we were hoping would control her aggression and settle her behavior more is not working, it is having the opposite effect.
She is now more aggressive, more hitting, more kicking, more fighting in general. She is refusing to eat again (what reason this time I have no idea I can't figure her out anymore). She wants to be left alone in her room and listen to her music which is fine but then the random running out and asking for stuff and not wanting it and then smacking the crap out of me because she doesn't want it is getting really old really fast. So.....
On to plan B. We have never really done this before, switch from one anti-psychotic to another but I guess there is a first time for everything. The next couple days will be getting her back to the dose she was taking before the med change and then reducing the one and adding the other slowly. New territory for me (and we have done a LOT of med changes between all 3 of them). The new med I have to say has me a little worried. Haley has never responded to medication the way she is suppose to.....ever so I guess the fact that they aren't suppose to use it on kids under 13 shouldn't worry me.
I just want my Haley back. I don't know where she went or what made her go there but we need her back. I know she wants to come back this can't be any fun for her either. I am going to keep my fingers crossed that this works because I don't know how much more of this she or I can take.

Tuesday, July 30, 2013

11 hours....A dash of hope.... And random flying objects

After many months of trying to get Haley's behavior under control and med switches we finally decided to make the journey to Cincinnati Children's Hospital to see Dr. Erickson. I definitely have to say that he is one amazing doctor and it is one amazing hospital.
Quick background, Haley has been diagnosed since she was 8 months old. Been on anti-psychotics since age 2 1/2 for aggression. We have tried countless other meds and she has been hospitalized twice for psych stays. Most recent a year and a half or so ago. While I have nothing against the psych doctors she saw here they were not "competent" (yes I used that word and yes I mean it) to help her. After recommending what I considered an outrageous med change I asked our Fragile X doc in Cleveland to get me a name of another psychiatrist for a second opinion. (I love our Fragile X doc, just to clarify she does not prescribe for Haley, after her admission to the hospital she did not feel comfortable doing so with the different meds they had put her on) After contacting Dr. Erickson and getting his opinion I convinced her psychiatrist to change her meds on a trial basis to see if we could get her stable enough to get her down to Cincinnati. (you should have seen the doctors face when I took her in after the med change, shock and awe, she was a completely different kid)
For the first 4 1/2 hrs......
She was pretty good. Thankfully at 4am its dark and she likes the dark. I was hoping she would sleep but no, of course not. We couldn't get that lucky.
When we got there I was nervous because she is very unpredictable, my boys I can read pretty well, but she is very deceiving. To my surprise though she loved the waiting room.
just plain silly

pretend annoyed

 pretend mad face
During the appt however did not go so well. She did not cooperate, nor did I expect her to. (would you after being up since 3am cuz I wouldn't) He did get to check her muscle tone but that was it Donnie had to take her out so we could actually talk. They did have the child life dept bring in what I can only describe as the Lamborghini of sensory machines. (literally the size of a refrigerator with a water tube in the middle that had bubbles and balls going with lights and fiber optics coming out and a light projector on the top, If I could have fit it in my van I would have) BTW child life is awesome. I have never had the experience of working with them before but it was great! 
               We discussed several options for medication and came up with a pretty sound plan of treatment I think (with Haley you never know since she never responds like I think she will). Then he asked if I had any other questions. Well number one on my list puberty. (I don't want to see her with PMS) Thankfully there are plenty of options. Number two and my number one concern, what are the chances of her being institutionalized? Why am I asking now? Well, good question, she is only getting bigger and stronger and I am not. If her chances are high then I need to start researching now because I like to be overly prepared for every possible situation if I can. (I obviously do not want this for her but I am a realistic person) Thankfully he is optimistic and said that he honestly believes he can get her behaviors under control and that he doesn't see that happening with her. ( I on the other hand am cautiously optimistic) Overall a productive visit. We go back in 6 months with follow-ups in Cleveland.
The ride home however was not good. She made it halfway before random flying objects began coming forward towards our heads. Anything and everything she could find. She even tried to rip the seat belts out. (which I have to say was kind of interesting to watch) We had to find a spot to pull off and "extract" her from the car and move her to the back and clear everything we could. (picture us on the side of the highway doing this it had to have looked pretty entertaining) The screaming is the one thing we couldn't stop which I really need to find a remedy for before we go again for my sake. If there was any plus side to the ride home I got to see this:
Mansfield Reformatory, the prison from the movie the Shawshank Redemption. Disclaimer: It was on the way and we did not get out of the car we just drove past so please don't think put Haley thru any more stress (I just really wanted to see it).

Overall Haley did better than I thought she would, Donnie said she did way worse than he thought she would. I just told him that was because he doesn't go to enough doctors appts. Hopefully next time will be even better and I might just have to install one of those cage things that police men have in their cruisers to block anything being thrown at me just in case.

Friday, July 26, 2013

Meet Jen!

Yep that's me! I think I am 2 in that picture maybe. I know I am adorable. I have been told by one of my best friends Sherrie (yeah you just got called out) that I still look the same as I do in this picture. I guess I am still adorable. I figured that I have introduced all of my children to you so I might as well do the same with me, at least more than what you get on the little Facebook feed thing. 

My childhood wasn't great, it wasn't bad, wasn't great.  I remember getting away with a lot of stuff my parents didn't know about because they fought a lot. (not bad stuff before your mind starts wandering too far, kid stuff, riding your bike too far from home, going to one friends house when your suppose to be at another, running off to buy candy) Now that part was fun! Halloween was and still is my favorite Holiday. Don't ask me why. I think it is because I get to be someone, anyone, else for just one day. I remember all the cool houses we used to go to (when Trick or Treat was at night) it used to just amaze me, some had smoke and lights and music and it just stuck with me. I will say there was one bad spot, it involved some neighborhood boys, I was younger than 9 so it is a little fuzzy but it is what it is. I do not think any further detail is needed.

I was enrolled in a Catholic School from the time I was in preschool on. I was a smart kid. I even managed a 4.2 once in High School. (not to shabby I would say) I had my first boyfriend when I was 16. I got pregnant when I was 17. (insert any catholic school girl joke here) Say what you want about teen moms. I totally rocked that! (evidence: have you met my son Nathan) I married my first husband not long after I got pregnant. We had Serenity 3 years later, that's her in the picture below and she was by far the easiest baby ever!!!!!! After almost 5 yrs of marriage we split. As to why, well.. one we were too young, two I am not an easy person to live with (disclaimer: this statement is based on third party statements not on my own personal opinion because I think I am easy to live with as long as you do it my way, what woman doesn't), three he likes to hit women, put that in any combination and you are asking for trouble.
I met Donnie (aka my husband) in a "grey" area of my life. (which is a nice way of saying depending on how you want to look at my situation at the time you could spin it however you choose, in my mind after 4 years of having the crap kicked out of me my marriage was over long before then) We then had our two children together Haley and Tyler. We have been together for over 9 years now, and we have been through a lot. We don't get a lot of alone time together, but when we do get it we make it count. Thankfully we both have a good sense of humor or I think we would have both gone insane by now (my sanity however has been questioned). We have argued and fought and laughed and cried and been to hell and back and I don't think I could have done it with any other person. He is my soul mate.
If there is anything that I have learned about myself in writing this it is that I am actually a pretty cool person. (not to sound conceited or anything) Nobody has an easy life, mine sure isn't. Most people get judged on theirs, I know I do on a fairly frequent basis and usually by people I wouldn't expect to be (and shouldn't be). All I can say for myself is, no one has walked my path, no one has experienced what I have. I think that all things considered I am doing a pretty good job with what I have (except migraines, I hate migraines, if someone could just magically fix that problem that would be awesome). So I guess with all of that said I will now do what my friend Sherrie asked me to do, which is put more cute pictures of me on here.

Friday, July 5, 2013

Meet Serenity

This is Serenity...
Serenity is our one and only "typically" developing child. She just turned 10 a couple months ago. She has by far one of the kindest hearts I have ever seen. (granted there are some days but for the most part she amazes me every day) She is very intelligent, compassionate, accepting, hardworking, creative, loving, dramatic, funny and determined. She is a cheerleader and socialite. She is an artist and writer. In my mind she will change the world some day. She loves her brothers and sisters very much and she does her very best to protect them. One story that comes to mind is something that happened on her bus. An older boy was talking next to her and he used the "r" word. She immediately got upset and very loudly explained to him that her siblings were that way and he shouldn't talk that way, they weren't able to help it and he shouldn't ever use that word again. When she has her friends over and they ask "whats wrong" with her siblings she says they have FXS that is just the way they are, they just act different than you and she moves on. She has seen a lot and had to deal with a lot in her 10 short years but she has handled it all as best as she knows how. There have been some tears and she gets angry because our life isn't like everyone elses but we talk through it and we move on. Serenity is one amazing girl who I am sure will be one amazing woman one day!

Sunday, June 30, 2013

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.

Tuesday, June 25, 2013

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!


Sunday, June 23, 2013

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.



Tuesday, June 18, 2013

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!!!!

Sunday, June 16, 2013

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.




Friday, June 14, 2013

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!!!

Thursday, June 13, 2013

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...