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.

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.

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!

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!!!!