Tuesday, January 14, 2014

And the mama claws come out

I haven't posted in a while because usually there isn't a lot going on here but over the last couple of weeks it has been quite busy. 

Most of the time the people that work with my kids are awesome. We have never had a problem with anyone really until now. I don't think I have ever been as angry as I am now.

Ok rewind to Dec 30th, our daughter Haley (8) and son Ty (7) receive services from a home health aide agency a total of 28hrs per week that is the max allowed. Now this has been happening for almost a year. I get our mail and while their aide is here (who by the way is awesome and is amazing with both the kids and Haley loves her) I get a letter from this agency. I don't think much of it till I open it and it states that as of Jan 1st they are discontinuing services for both because their contract with our insurance company has not been renewed. Seriously???!!! Do you people not own a phone!!! (they did however put a phone number in the letter of another agency I could call to transfer them to that is I guess a sister company of theirs) I was needless to say pissed because since Haley can not speak her aide was like an extension of her if she needed something and couldn't wait she would go to her and "show" her what she needed. This helped tremendously with the meltdowns and self injury because her frustration went down since she didn't have to wait on me to be able to help her. (if I am changing Ty or doing laundry etc I can't just drop Ty back into it to get Haley her milk right away) I called the number they gave me the next day at what I assumed was the start of the business day 8:15 only to be told it was an on-call number and then I was yelled at and hung up on. Well I am the wrong person you want to piss off at 8 in the morning. After some phone calls I am told that our insurance had terminated the contract with them and that the new company has their info and that they are suppose to be out in a few days to do an intake on the kids. I then get a call from their insurance case worker who looks things up and is confused because a claim was filed by the company at the end of November but something was wrong with it and when they tried to reach them to clear it up they never contacted them back and now magically the contract is ended. Hmmmmmm. Ok. So she also call them and says they are suppose to come out. Awesome so I wait. 
So after three days of waiting I call the new company and talk with them. They say oh, yes we have the scripts and stuff but we are waiting on paperwork from their doc she was out of town............. Uh ok well we are going to see her tomorrow so I can guarantee you will have it. I then ask the most important question do we keep the same aide or not since they are a sister company and are owned by the same people. Their answer SURE it is not a problem give us her name and we will talk to her! YES awesome WAHOO!!!! Next day we go to their doc, I ask about the papers she says yes I got them but they didn't send me the right papers and they never sent me ones for Ty at all so I had to call them and have them send me the right ones and ones for Ty................well thats just peachy. 
Next morning I call them and say you have the papers no when are you coming out? Ummm well we have them but your aide doesn't want to work with your kids anymore so we have to find staff....................HUH???!!!!!!!!!! (now I am super pissed because I have talked with their aide and she does want to work with them so I am very confused) So I call their aide and she confirms what I suspect no one has called her at all to ask anything.  I call their caseworker again and she calls them, she gets the run around for a few hours then calls me back. She says that first the company had said they found a way to bill the insurance then they didn't , then the aide didn't want to work for both companies (but they are the same one), etc etc etc I cant even keep it all straight anymore. It ends up being they send her aide back over the weekend to help and a couple days during the week until the new company can come out. Ok great. Now today after hear aide leaves I get the message (from her aide not the company) that she was suppose to come tomorrow but since they are doing intake tomorrow the company is just not going to send her out...............
Nothing from the company, no call telling me she isn't coming (they obviously know), no one from the new company is coming just nothing. So again Haley is just without one.

Now normally I do not rant and rave but in my opinion if you are providing health care and especially this type of care and I am suppose to trust you with my children (and my children don't speak and they can't tell me what is going on or what you do to them) shouldn't your company represent itself better than that? I am suppose to be able to trust whoever I talk with on the phone. I don't know who that person is it could be a secretary or the manager of the whole building for all I know and for me, my caseworker and their insurance company to be lied to and lead around is (in my opinion) wrong. Now I know Haley does not have a life threatening illness or condition but that does not me she deserves any less care than anyone else. Just because their needs are different doesn't mean you get to treat her and Ty like they don't matter. We have worked hard with both of them to make the progress we have and my husband and I both have the concern that she will regress because of this change and the way it was handled. To get anyone to listen to that unfortunately doesn't seem to be working. I am incredibly disappointed with both of these companies and how they are handling this and am seriously considering using neither and trying to find some other company in our area that will take children (it took a year last time to find one). I really hope they aren't doing this to everyone.


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.