The Hunt Is On

To find a school or schools for the kids. We have about 55 days give or take until school starts back and I have not found anything that seems like it will work. I was waiting to get the test done and back but I have had those now for weeks and still haven’t found one. I have sat here for hours tonight looking some up. I have at least 3 kids that will be in school this year. Maybe 4 if my little one gets head start or childcare. A lot of the private schools take childcare so I would like to get as many of them into one school as I can. That is hard to do with my oldest since she is going into 7th this year. A lot of the schools only go to 5 some up to 8 and very few to 12.

The kinder I am not worried about getting in they will take him, the older two they want to see test results and my Big boy didn’t do so hot on his. I know he must have skipped a lot of it because I when I seen him he was looking off into space and not working on it. The guy told him to work so he started looking at it but I don’t think he really read it more than just marked stuff. My oldest said at one point he was drawing pictures of a dinosaur eating  a guy on his test. Lovely I know. He scored lower on it than he did when I took it a few years ago so I know he couldn’t have read it and really done it. I know he is not on the level it says he is even the therapist said that. You can talk to him and tell he is not years behind in school.

The few schools I found I thought I would really like to get them into after talking to others find out that they have a lot of problems or problem kids that have been kicked out of school. Or they take two of my kids scholarships but not the other ones because his is different. It sucks because his is like twice as much as the other twos and would pay for extra stuff and I could order him different supplies and things. And he has two year worth of money laying there he will lose if we get the other one and use it so I am trying to find one that will take his and that is good regardless if he is the only one that gets and I have to find the other three other places.

We have a school right around the corner that will take my oldest, my kinder and maybe my Little Bitty but not my one with the different funding. I talk to them they said they would check into it but never called me back. He really didn’t seem interested in trying to be able to take it. He said he felt it would be to much work to to try take it. But I looked and if they already take the others like they do its just a matter of filling out forms. I am not in anyway shape or form crazy about the school but it’s a ok school. My older sister went there all the way through. But I figured it’s only two years and we will be moving so then we can find something else. probably better than putting them in public school all the way around. It’s just not as good of an education I know the other schools offer. But I also have to be able to get them all to school all over the place if they are all in different schools and get there to pick them all up on time at all these different schools if they end up split up, and if I need someone to pick them up they are going to have to go all over towns to pick them up. I don’t want to be making a 50 mile round trip to take them to school every day like I did for so long before.

Tonight I was thinking about it and the school around the corner I don’t care for may be good for my oldest for a year or two. I know they will move the kids up if the work they are doing in their grade is to easy and they feel they can handle the next grade up. My oldest is testing out at half way through her second year of college for reading and high school for everything else but math. She gets so very board in school she use to tell me all the time we are going around the room reading and I have finished the book or chapter and the rest of the class is still on the first few pages or chapter. We have our work to do I get it done and then sit and wait for the rest of the kids to get done so we can move on to something else. She got my General Psychology book the other day and ask me if she could read it and answer the questions after each chapter. I told her yeah but not to mess it up I had to return it I rented it not bought it. She ask when it was due and I told her. It’s due the first week of next month. She said oh ok it’s only 15 chapters and about 20 questions after each chapter I should have it all done by then with no problem. I am waiting to see if she does it. I was surprised she wasn’t farther along the other night and commented. She said well I am trying to concentrate and really studying it I find it interesting so I take more time to read it. We weren’t home all day today so I don’t think she got to work in it today. But moving up might be good for her. In third grade she scored 130 points on her IQ test they gave her. They were testing her for gifted she got in that.

I found some more schools tonight I am going to try and go check out tomorrow when I drop my little guy off at school in the morning. One I think would be really good for the boys because they offer the different therapies and things they need as well. But then it looks like the take my older sons funding that the other schools don’t but not the funding my younger one has that the rest do. So I will have to see if I can switch my younger one over to the other since he does need therapy and things.

It’s going to be a long day tomorrow, it’s five minutes to three and I haven’t been to sleep yet, I fell a sleep earlier for a little bit and not wide awake. I have to have my little one at school by 8, go check these schools out and pick him up by 1230 so we can go to the dentist at 130. We will be out most the day tomorrow too. If we are home by 4 I will be shocked. I just hope in all this checking out schools tomorrow I find one that works for them all and they get signed in and set up.

It really stinks that our public schools are so bad that they can’t just walk three houses down and go to school.

 

Dear Teacher, What I Want You To Know

 

I just seen this come up on my news feed and decided to watch it. Listening to it I just sat here and cried, it sounds so much like my big boy. The let me move, let me rock, let me look where I need or want because I can still listen. He never sits still from the time he wakes up until he goes to sleep at night. He is always rocking or moving in some way or another. One of the first things that I noticed about him when he was little that wasn’t like other kids. He really isn’t trying to distract anyone or be disrespectful or not listen. 99% of the time if he can get up and move around or fitget in his chair he can tell you more of what was said or going on than someone sitting doing nothing but listening and watching what is going on. He catches things you would think for sure he wouldn’t or couldn’t have. I have to remind myself all the time when we are doing school that he is listening and doing what he is supposed to do he just needs to move or look around. It does get on my last nerve sometimes. But it isn’t his problem it is mine and I try not to say anything to him.

It’s hare because others just don’t understand and that I let him get away with things or don’t make him listen. They think he is being rude or not behaving and that he is old enough or more than old enough to understand and just stop. He looks a lot older than he his because of his size. They think he should be strong and lift this or that or not get upset about things that kids his age get upset about because they don’t stop to see how old he really is. Sometimes he may get upset about something that most kids his age wouldn’t but that is because of how he is. He isn’t like all the other kids. They don’t see it or understand. I just wish more people were a wear of things like this or more understanding. His dad says I always take up for him but I really don’t I take up for him when he needs taken up for. When adults aren’t being adults and treating him like he should be treated or others try to run him over, pick on him or make fun of him. He just don’t like it because a lot of the times I have to step in when because he isn’t treating him right. He swears he is but he can’t stand there and yell at him belittle him or call him names. Different or not that is one of my biggest pet peeves is people calling others names it don’t matter who it is, who they are talking to or why.

Re:Scholarship News

We had Christmas at my moms and had dinner there Christmas night. There was a bunch left over so she said for me and the kids to come back last night and we would have dinner again. No one felt like splitting everything up and us bringing some home as late as it had gotten. We had to get something for her and take back down there anyway.

When we got home from there my little guy wanted to check the mail, he brought me it. There was a letter from step up in there (Scholarship News). I was kind of afraid to open it. We were waiting for his funding to come in and would be getting a letter when it did. But it was such a blah day and the kids were in such moods I figured it would be more bad news. That they had found something wrong or something. I have been worried that the school may still be getting money for him from the other scholarship and I not know it.

I almost just laid it up until another day to open, but the wanting to know what was in it got the best of me. I opened it and it was the letter we had been waiting on. It said his account has been funded and that the money is there now for us to start using and gave the amount he was awarded. I was blown a way by the amount he was awarded. He got the full amount of the scholarship. It had said that how much you got was biased on grade, disability and things like that. I know he isn’t near as bad as a lot of kids out there and he is in 3 rd grade. I figured to get about half or less of what he really got. I am so happy this will help get the things we need for school now and we should have a great second half of the year.

I am going to order him a laptop and math curriculum to start with. Then decide what other curriculum we are going to use. Now I have to figure out and get my oldest a laptop. Her birthday is at the end of next month. I think I will tell family that I want to get her a laptop for school and that if everyone would like to pitch in it would be great. She is getting older and not into toys as much and with just having Christmas she really don’t need more stuff. She got a lot of craft stuff and most everything that she had asked for.

Short Changing Special Needs Kids

As you all know my son is autistic, he is considered aspergers or high functioning. I decided to homeschool him this year after having problems with his school last year and the school we are zoned for not really being that good. We have had problems at it before and pulled both kids out in the past. They have been in two different schools towns apart for the last 4 years. Between the lies at my sons school. My daughter having trouble with the new common core at her school and bring lice home once a month. I decided that it was no longer to our advantage to make a 50 mile or more round trip to take them to and from schools that were not meeting their needs. I talk to the therapist and things about other schools and what ones seem to really work with kids with special needs. And heard the same as what I had found when researching them and checking into them myself and having a friend who’s son has been going to them. Not many really offer services. They say they do to get the money and the scholarships, grants and things like that but when it comes down to them really being able to handle the kids they take on they can’t. They are getting a way with not trying to so they just push them through because of the no child left behind and all that. It don’t matter if they learn the stuff or not they just pass them on. What are they really getting out of that? If they aren’t learning it they finish not much better off than when they started.

We went in September to see what services they offer for my son since we started homeschooling and were no longer in private school. Because here it is hard to get services outside of the school board. I went to the meeting they told me his IEP was up for review. They said that they couldn’t offer any services under the iep because he was not enrolled in school. They said they couldn’t offer services under the service plan because he was no longer in private school. They went on to explain in great detail this other way we could go about getting services. But they told me over and over that he may test out of services because he didn’t have a “real teacher” to do his evaluations. Well I am his teacher and who knows their child better than their parent? I told them fine do all the reviews and things they wanted because I had no doubt that he would still show needing services on their test they done even if they didn’t think so from mine.

They went into all this detail about the program and services they were testing to see if he could get. They told me that he would more than likely come in 3 to 4 days a week for a hour to two hours a day. That would cover his ot, speech, language math and other academic tutoring he may need. Their words not mine they didn’t want to do it all in one day they didn’t want to over whelm him or put a strain on him. But they think he is fine to sit in school all day for 7 hours a day get all these services and do his school work. I said that was no problem if that was what he needed then he would be there. Then they told me that it would probably be at different times each day depending what service and teacher or what he would need that day. That we couldn’t say we want him to come every morning at x time or we only wanted to come x days. I said that is fine we are pretty much home during school hours any way we live 3 houses a way so he could walk over and walk home. They talked about they didn’t know if he got services this way if he would have to take the state test they give or if we could still just do our own test or eval and send it once a year like we have to. But they were supposed to find out and let me know at this meeting. We spent days since going back and forth and him doing all their test and me filling out their forms and doing the evals they wanted me to do.

At this time it was made very clear that we would not be enrolling back in school we just wanted to know what services we could get as homeschooling family.

Today we get to the meeting and they start off with the one lady going over the iq test and explaining his score and telling me what it all means and what she was worried about. All stuff we been looking at for years so not surprised. Then the others start telling me stuff. This first lady has to leave for something she got called a way to. She stops the meeting ask me what I plan to do with my son and all this. I told her to keep him home and school him see what services he can get here and see where we are next year and what we are going to do. Another lady stops and says well if you take the iep then we will offer all the services we are going to go over here today. But if you are not putting him back in school then we will not offer any other services. I said they told me they were testing under a different program since we are home-schooling told me all this was here for us. She said no if you want to sign the iep and put him in school it will start tomorrow but if not then we will just file it and if you decide to bring him back we will offer them. I was so mad. We went on went through all the services and what he needed in each and that was it. They typed up notes saying that we refused to put him back in school and their for they are not going to offer services. Then acted like they couldn’t wait for us to get out of there. Other people were coming in for other meetings and things.

All I could think was did I miss understand something in the last meeting. I was just so thrown off gaurde and confused when they said all this that I couldn’t think of everything. I got home and started thinking about it and what was said. If they hadn’t went into such detail about how the program worked, that it would be a few hours a day that it would be at the times they had they could get him and even tell me about what time some services would be I would say maybe I miss understood something. But I didn’t they out and out lied to me about all of it. There was no reason to go through this all again. There was no agreement to do another iep and put him back in school. We agreed to test him see what services he needed and work it out so that he could drive in and get them.

I’m so mad now I guess I have to spend tomorrow on the phone trying to figure out what happen and why they out and out lied. They get about $3000 a year between my two kids and they do nothing for them they never step a foot in the door of the school. But then they want to fight me on offering him services as simple as speech, ot and things.

 

I Feel

Right now I feel like my heart is going to pound out of my chest. I feel scared I don’t know of what just scared. I feel like running I feel like I need to get a way I feel like I just want to get in my truck and start driving. I don’t know to where I don’t even want to go anywhere. But I feel like I need to get a way. I don’t know what I need to get a way from there is nothing here nothing going on. Everyone is in bed have been for hours my big boy in watching tv being good not bothering anything. I am laying in my bed and I feel like just staying here and hiding under by blanket and not getting up even though I want to get a way like I need to get a way. The erge to just go is so over whelming. But that would take energy I feel I just don’t have. I feel I should just get under my blanket and go to sleep and I try but sleep just won’t come. So then I go back to leave just leave just get a way. But a way from what I cry I can’t help it I can’t stop it I just cry and cry. I feel like talking to someone but at the same time I really don’t want too. I feel like I need to get this all out and I don’t know what to say or where to start if I had someone sitting here in front of me to listen all night. I wouldn’t know what to say I wouldn’t be able to say anything I wouldn’t want them to know how I feel or that anything was wrong. I am not sure why I am writing then I just feel I need to do something anything. To try to busy my mind and get it off of everything running threw it. But it don’t matter what I do it just won’t stop it. Everything just keeps coming and flooding threw me I feel like I can’t breath at times like I am smothering. I just want it to go a way I want it to stop. I have thought about going to the hospital a lot the last day or so but why what are they going to do what do I tell them? I feel like it isn’t that big of a deal and that I will get threw it I always have before. But how long do I have to wait this time how bad does it have to get before it gets better. It seems to last longer and be worse and get worse every time. It seems to get worse every day lately. I don’t understand yesterday wasn’t to bad the day before wasn’t good it was drab cold and rainy the air was thick. yesterday I wasn’t happy but wasn’t sad I just felt in a funk. I don’t know what it is even when I am doing other stuff I keep having this thought to go to the hospital and I keep having this thought to go to church. I don’t have a church and like the hospital if I went to one what am I going to tell them? They are all just going to think that it is no big deal and that there is nothing wrong I just need to get up and do something and get happy or whatever. I want to so bad I want to be happy again like I was a few years ago. this is just not a good time of year and with everything that has happen and that is happening I just don’ t know. Thee is just so much going on so much I am worried about then I worry about the baby and the stress I am going threw and the effects it is having on it. I just feel like if I wasn’t here everyone would be better off. My kids would be better off because if I wasn’t in the picture they wouldn’t have to wonder why mommy never does anything or stays in her room all the time. If I wasn’t here they would just get use to it and have a new normal and go on with life and forget about it. All while having them thoughts I am thinking no they wouldn’t they need me here they need me to get better and be the mom I use to be. That I am the only one who really fights for them and makes sure they are ok safe and have the things they need. I am sure part of that is why I feel the way I do because I am pretty much the only one who dose for them. Ex does what he has to do for them to get by. He don’t fight for them or take care of them like they are use too. He gets over whelmed and throws fits and says things to them and in front of them. Even if that is how you feel you don’t say that or do that in front of them. They didn’t ask to be here they can’t help it they can’t do it them self and things. They don’t understand how hard it can be and how over whelmed you can feel because of everything going on. They don’t understand that yes sometimes we just need a break because of everything and that moms and dads just don’t get that break often enough. They don’t know none of that and they shouldn’t they are kids. They shouldn’t be made to feel bad because they need something want some thing or because something happens. I am the one who tries to hold it all together and keep everything from them and make sure that everything gets done. I heart hurts I feel feel sick I feel like I am going to be sick. My head is pounding from crying my jaw and neck hurt from being so tense. My blanket and pillow are wet from all the crying since I laid down here to write this and my other post. As all this stuff runs or should I say flies threw my mind because I don’t know how anyone person and can have such thoughts and contradicting thoughts to go with them all at the same time and so many so fast. It is like I took a cd or a move and put it on fast forward and am trying to watch it. That’s how it seems the thought are going threw my head a whole move and warp speed all in a matter of minutes and then it starts over or just keeps going like it has no ending ever. The last 3 days or so I can’t even sleep good when I do fall asleep. I keep having these dreams bad dreams I am just trying to get a way. I don’t know what I am trying to get a way from most the time there is just something after me and I am trying to get a way. Sometimes it is about the snakes lizards and reptiles all around and trying to get me I feel like they are trying to kill me. A new one the last couple of day I my ex is chasing me and trying to get me he is really mad at me for something. Not RC but father of the year ex. I don’t know why we are all right here in the same house together him in his room over there or at work and me in mine. We have had a few arguments but nothing big. He hasn’t said or done anything out of the way or even gotten mean or nasty in a while. We got into a argument Saturday night and he left to go see a friend he had plans to go out. I was upset and typed him a not so great email and I figured we would get into it about that but he has never really said anything about it. I know he got it and read it because he made a couple comments. But he wasn’t really mad then and didn’t really say anything about it. Everything is just as is doing our every day thing. I was kind of surprised about it and that he didn’t get really mad about it and say more. But I don’t feel like he would try to do anything to me or anything like that. I have had the thought the last couple of weeks that he may try to take the kids and things because of the way I have been and how bad I have been. I don’t know why but that has been bothering me for a week or so now it keeps going threw my head. That that he is going to use what I have went threw the last few months against me to try and keep them and not let them have them back. I feel i need to go and fix everything with them and make sure people know that I am with them and that I have them or have them back. But then I can’t show I have a place and things so that don’t look good when they ask. Even if I do he can still use the fact that we are still living here and things to try and keep them. But then I know it is all just my mind because at the same time I tell myself you know he don’t want them all the time and he can’t handle them all the time. He has done said it to many times and to many people have seen it. He has said it in text and letters to me all of witch i have. He says all the time in the same letters and things what a great mom I am and that he don’t want to take them a way from me and they need to be with me and they are better off being with me all the time and that he is ok with just having them on holidays weekends and when he is off and come and get them. He don’t want to not be in their life but he just knows that he can’t do it all on his own like I have been for so long. He couldn’t do it for a week with just two of them. i know part of it is being here with him again all the time too. It bothers me because it confuses the kids and they don’t understand and they are going to have to get use to us all living in different house and things again. I tell them all the time this isn’t going to be this way and it is just a temp thing and stuff but I don’t think they really get it. I have applied to job after job after job and don’t even get a call back. I have a 3 year gap in my employment history because I stayed home with my kids when I got laid off. I put that I worked for my friends store for a while. But there are gaps all in it where I worked until the places closed or I got laid off a lot of times and then if I didn’t have to I didn’t go right back to work I stayed home until I had the baby and stayed home for at least a year or so with them and things. So they still don’t call you back because they don’t feel you are looking for something full time all the time. they don’t think that things change and you may need to work full time now. I can’t do the things I use to do either. I hurt my neck and upper back when I got hit. Plus I got a report from two years ago they just done x rays and said that the bones in my back are deteriorating, there are flat spots in a few different places my back was turning in and like a trapezoid in a spot and that i had all this stuff forming all threw the spine. There isn’t a day that goes by that I am not in some kind of pain most days from it. I have built up such I high pain tolerance from it because I can’t walk around popping pills all the time. I know how to do stuff on the computers but I don’t know the office programs and things like that that everywhere once you to know. I am not a good speller and things either but I can do good and get by I always have with no problems. Then feeling the way I do if I had a job I can only imagain trying to drag my self threw the day and hold it together. I don’t like going out and being around a bunch of people and things. I use to be bad in big crowds I couldn’t do it. But I could go to the store and places and if I had to go into big crowds i knew what was going on and I would talk myself out of wanting to run or have an attack and things. Right now the thought of going into the store is just something I don’t even want to think about. i don’t know so much it is the fact of being around the crowds of people or if it is more the fact that it would take energy to get up get ready and even go threw the store to get the things I need and like everything else I feel I have none left to do anything with. I just don’t know anymore. I feel like a huge mess. I feel like I just want someone to hug me and love me like I do my kids and to tell me everything is going to be ok and that they are here to help take some of the stress off. I have never had that. I never really felt that much when I was a kid I always felt like a berden and like everyone just done what they had to to get by and get us grown on our own. I think that is one reason I fight so hard for my kids and care so much about my kids. I don’t want them to feel that way ever. I love my kids to death and I want them to know that and feel that. I want to be close to them and them to be close to me. That is another reason why this is so hard on me because I know even though they don’t say it and they don’t show it it is effecting them me being this way. I just got to get out of this and get over it and I just don’t know feel like I can this time. I feel like something has a hold of me that is way bigger than me that there is just no way out this time. I have never really felt like this even when I didn’t want to live before I didn’t feel this way. I want to live I want to get over this I want to be here for my kids I want to be that mom they use to know. I just don’t think I am going to ever get back there. Even when I am having really good days I feel like I am walking around in a haze or something. I feel like I have been sleeping the last two or three years. I feel so lost with everything and how to do even the most basic simple things at times. I just don’t know what is going to happen or what to do at this point i really don’t anymore. This has went on for way to long and it just seems there is no end in sight. At least for right now this few minutes now I am starting to calm down some. The wanting to run a way is going a way I feel like I can breath again and I am not crying my eyes out. I feel so exhausted but yet still don’t feel sleepy. My body feels so heavy. I am going to go try to find something to watch and hope peaceful sleep comes soon. I am sure two out of three will be up by at least 8 if not before. I need to be at least a wake and know what is going on and feed them and things. Ex has to work. I really feel like i do just need to get a way for a little bit just me by myself for just a few days or week even to just relax and not have to worry or think about anyone but me for a change. I have not had a kid with me for more than a few hours in the last 4 years. Probably. I all most always have a kid with me or thinking about where they are and being there to pick them up in a little bit or something all the time for the last 3 to 4 years. I might get a break for a few hours once every 6 months. Even then I am still thinking about them what they need if they are ok getting done in time to get back and be there with them on time and on and on. if your a mom you know what I mean. but you probably don’t because you probably have people who help you and support you and your spouse. People who know it is important that that you have a night or two here and there every so often to not have to worry about the kids and just relax. I really don’t have that. I don’t have anyone who watches my kids or takes my kids for the night or weekend or even the day. I really don’t. They are all to busy with their own life or feel that you should be with your kids 24/7 and your a horrible person for not wanting to be.

Bad Influence On My Kids

I hate to say it but I feel like I am such a bad influence on my kids lately. Not that I am doing anything horrible or illegal. Just the way I have been feeling the last few months and things. All I want to do is stay in bed and sleep. If I am not sleeping I lay here and watch something on the computer or check things out here and other places. They do their homework play their games and watch tv. I come out sit on the couch and eat dinner then go back to my room if I come out to eat.

Sleeping has been horrible for me the last few weeks. I have always been a night owl but was in bed by 12 most nights. When I was with RC I was doing really good a lot of nights we would be in bed by 10 or 11. Since I have left there and not been feeling good most nights I can’t go to sleep no matter how hard I try. I had a routine down pretty much. I knew no matter what I wouldn’t fall asleep until at least 2:30 am most the time it was closer to 3:30 am. Then I would get up around 6 and get everyone up so they could go to school and work. Then lay back down and sleep off and on until 7 or 8 when my baby boy would get up. I would get up with him and we would go in the living room until the kids got home and took it over. I would give him breakfast and things.

Now 3 comes and goes and I am still sitting here wide a wake. Then before I know it is 6 and time to wake the kids up. By this point now I can’t hold my eyes open. I will pass out and sleep 4 to 6 hours before I wake up. The last 4 or 5 nights my baby boy has been staying up until all hours of the night before he goes to sleep and he is no longer getting up at 7 or 8 an making me get up. He is sleeping straight threw until I wake him up when I get up. It first started when he was sick he was sleeping day and night most all the time only up a few hours. I figured one he got better he would be back on track but he really hasn’t been. Now he is up at night and sleeping in the day. I try everything with him to get him to sleep but he just won’t. I had this problem with my older son when he was younger too but not this young. I don’t know if it is just him if he is going threw a growth spurt or off from being sick. I don’t know if he is having problems like my older son had or if he is just picking up on me and it is from that. I feel bad because I should be getting him up and making him stay up in the day and trying to get things turned back around but I just don’t have the energy to make myself get up much less chase him around.

I missed going to the doctor today because he was up until 5:30 am I was still up at 6:30. I didn’t feel I was able to drive the half hour 45 minutes it is to the doctor sit there for 3 hours and be fit to drive us home. I knew with him not sleeping all night he would be in a mood too and it would be a huge melt down and that we both might end up in a crying heep in the floor. That would look just great wouldn’t it? I figured it was best to just stay home and make it for a little bit later time next week and that way maybe I could find a sitter for him too.

I feel bad for my other kids too I am trying to get up and do things for them and with them but I just have no energy to even think much less do right now. I really wanted to go today and talk to them about what I could take to help me get out of this. At the same time I am scared to take anything even if  they say it is safe because you never really know. They say it is now but then in a few years or months now they say oh no wait this is why your baby has this problem and that problem sorry.

I already have to worry about the autism, anxiety,  depression, downs and things that run in our family. I would hate to think I took something that caused problems or made it more likely for it to have one of the other problems. I already wonder about my older son and if it was because of something that I took they told me I needed because of things that were going on. At the same time I keep telling myself I can’t live another 20 weeks or so like this. Then on the same hand it’s like it’s already been 20 weeks and you made it this far why risk it when there is only 20 more to go. My mind goes 90 miles a minute around and around about all this stuff. It seems like it never stops never takes a break.

Proud Mommy

I have to say I am so very proud of my big girl they got their report cards a few weeks ago and she did very well on it. I think she got all A’s and a B. It was A’s and B’s I know that. The other day she come home all excited she got a certificate for making honor roll. This from the girl who went from what would be honor roll 3 years ago to failing 2 years ago. I went to the school and talked to them about help for her and everything I could do. But they didn’t help her. I took her out of school and put her in a charter school about 10 miles a way from my house. with in 9 weeks she pulled her grades up from all most all failing to all but one passing and by the next 9 weeks they were all passing grades. To back on honor roll with in a year. I help her when she needs it and the teachers help her when she needs help. They always make time and take the time to help any of the kids. I hate that the kids won’t be in their schools when we move a way but at the same time I think my big boy will get more help if we move a way and I think the schools will be better for her too. I think that not only will she do good grade wise but she will have chances to do things that they don’t do in the schools around here. I just had to brag on my baby girl she is doing so good and is such a great kids.

Father of The Year Strikes Again

It started out as such a nice day. The school calls and says that my middle needs picked up at 12 there is no bus. I knew this already and had told ex that he had to be there at 12 no later to pick him up. I call to make sure he knows because the school said they would see him at the bus not thinking. I call work they tell me he is on the truck out of the county. I tell them he needs to call me right a way because when she is on the truck he never gets home before 2 or 3. Both kids get out early and he has my truck. He never even called to tell me he was going out or to bring my truck home before he did. He finally calls me back and tells me he don’t know and that he didn’t know. I told him we went threw this last night and this morning that they got off early and that if he took my truck then he had to be here to pick them up. I told him he better get my kids home or my truck to me with gas in it so I could get them.

He calls back at 10 and says one of the guys at work is going to take off early and go pick them up to call the school and tell them he was coming. I tell him that I don’t think my son will go with him because he don’t know him that well and the way he is he don’t like to be with people he isn’t use to being around. Then he says that he will have him pick me up and take me to pick them up. I don’t want to go anywhere with this guy. He isn’t a bad guy he is alright and everything. But he is one that to him this is all my fault that me and my ex isn’t together and all this. He hasn’t said 2 words to me since me and him split up. Then he is going to want to know what is going on why I don’t have the truck to get them and why he takes them to school and get all into stuff that is none of his business.

I had it and I finally told him to either have my truck back here by 1130 with gas in it or him and my son better show up here by 1230 in it. If he didn’t I would be reporting it stolen because he was supposed to have it here in time to get the kids and that if it wasn’t back by said time there for it was considered stolen. He started about us being married and half his and all this good BS. Normally it would be that way. But we are in the middle of a divorce and we have been to court once already and the judge already addressed the issue of the trucks and said that my two were my two he was not entitled to anything to do with them and his was his and I had nothing to do with it. There for it is not half his anymore and his is not half mine. He tells me go ahead he don’t care and he will just call DCF to pick the kids up since he can’t.

The only reason he has my truck is because he has no gas money and no gas. He already told me his wouldn’t make it to take the kids or pick them up. I borrowed gas money to have gas for the week. Told him to make sure that middle road the bus not to take him to school because we wouldn’t have enough gas for the week if he took him to the school not the bus. They have missed the bus every day this week. So now my truck is out of gas. I don’t have enough to make the trip if I had it. So he was supposed to borrow money for gas to get threw the next few days. Since he didn’t have gas for the week I had enough for the kids to get to school and him to work I didn’t have anywhere to go so he could take them and take my truck. This way he got to work and they got to school. But he missed the bus all week and didn’t have the gas to do what he was supposed too.

He tells me well I don’t know what to tell you I guess you need to figure something out. Um hello you have my truck and you were supposed to be back here in time to get the kids. Your the one not doing what you were supposed to do yet again. I told him he needed to figure it out and either get there to get them or get my truck here and that he needed to call me back in a little bit and let me know what was going to happen. Good thing I got a hold of my friend and had her come take me to get them. Because it was almost 1:00 and I still never heard from him. I told her if she could take me he would give her $20 in gas Friday when he got paid. He should pay her it is a 25 mile round trip. He has done this before and left me to walk to get them. Good thing there was they were at the local school. It was still about a mile a way and 100 degrees outside. My little one was just a few months old to be drug around in the heat. But he didn’t see anything wrong with that either. He makes me so mad. My friend drops us off at home and I relaize that his house key wasn’t on the key ring. He had taken all the house keys and we were locked out.  I called him again and asked him what about the kids. He said I will be there about 130 I guess I have to go get them then. I said he got out at 12 and she is getting out that isn’t going to work. Well I don’t know what to tell you to do. Like no big deal. I finally told him that I had someone to go get them and he owed them gas money and that we were locked out. He is telling me to pick one of the kids up about 4 foot or more off the ground and poke them threw this little window that has stuff all in front of it and my stomach and things are already hurting from picking up on the back door and trying to open it. I am not supposed to be picking stuff up. My heart is hurting from everything going on and won’t stop. He says well you will just have to wait I’ll be there in a little bit. We we sit locked out the kids have to go to the bathroom and need to eat lunch.

He has the nerve to say to me you act like I just don’t care. I said you don’t if you did you would have never got on that truck and went out of town knowing that the kids needed picked up and that you had my truck and I had no way to get them. I said you say you care and that your daddy and want to be husband but I sure don’t see it some daddy and “husband” you are to leave us like this yet again. He has been boo hoo I want to get back together and making comments to himself for weeks about wanting to get back together and about me. But then goes and does this shit. I really don’t think he cares at all or he would have never done what he done. It’s 2:20 and he just walked in the door. If I had not called him he would have never called back never known if the kids had gotten picked up or anything until he got here. That don’t bother him and he see’s no problem with that. I don’t get how you can be that way and not care about your kids and where they are, if they made if home from school when you left them stuck like that.

I was supposed to bring them get them all settled so that I could leave and go up find a job get us a place to live and then come back and get them. I am so glad that I didn’t leave them because he acts like he can’t even stand to have them around 9 times out of 10. They ask for something or need something and he throws a fit like he is 2 and makes nasty comments and talks to them like dirt like he always has but worse now. I guess he likes them not being with him all the time and has gotten use to being able to get up and do what he wants when he wants with out worrying 25 days a month out of 31. I say something when he does it and he says it’s fine blah blah they need to learn to do things for them self and all this. My kids are 2, 7 and 8. They do do a lot for their self and they do a lot to help. If they need something once in a while or need him once in a while then he should do it not complain and talk about how he has to do for them all the time and how he can’t have a life and things. It’s not like he really has one any way. He is mad because it takes him 2 seconds longer to text some tramp he is talking to off line back and she might not like it. Thats all he does is sit online and hunt for women to talk to or sit and text them 24/7. Then wants to complain because it goes no where with them or that he has no friends. Maybe if you got out went places and really met people you would have. Maybe the few times you meet in person they see what you really are and don’t want anything else to do with you. It isn’t the kids fault that you haven’t got friends or met someone. It isn’t there fault that the last one you wanted didn’t like it that you had kids and didn’t want to keep talking. He acts like it is and that they are in his way. But then at the same time he don’t want to to just go on and have nothing to do with them because they are all he has and then he treats them the way he dose. It makes me sick.

He is in the kitchen now why I am sitting her doing this slamming stuff around and talking shit to him self. Big deal don’t bother me none you are the one who screwed up and he is very lucky I didn’t call the police and report my truck stolon. He is also lucky I got the back door pried open because I was ready to knock the glass out and go in. I tried it once last time and it open. He went to my sister and borrowed $20 after work for gas for the next couple of days. My sister he can’t do nothing with out coming to me or my family to help him out. I haven’t told him yet because we have trick or treating in a little bit and I still really don’t feel good. My heart won’t stop hurting and I don’t want to get all worked up and mad again. But when we get home tonight I am going to tell him that my truck and take the kids to and from school and that is it. It will not ever again take him to work. He wants to do what he done he can keep his ass out of my truck it isn’t riding him around every where he needs to go anymore. If he needs money he better save enough out of his check for the next few weeks until he gets another one to get there. I’m telling him too that when I move he isn’t going with if he goes he better move a town or so over and he better get a place when we get there. If he don’t I will move again. I am not having him on top of me like I did when he first moved out and I am not living with him like we are now until he gets a place and a job. He even tried to tell me today because I got so mad about what he done to move and get out of the house. I said again you need to know the law my name is on it and I am staying here it is my house too and you can’t put me out or make me move. If you really want to go there take me to court and by the time it gets in court I will be moving any way because it will take a month or more to go to court and we have to move by the first of December. He really got mad then. I don’t care. I am done being done this way and when I am not even with him and I let him use my truck with my gas in it so he can get to work and he can’t bring it back on time or be there to get the kids like he is supposed too. I don’t think I am in the wrong at all.

I have to get off here and go to the doctor and get home so I can get the kids ready to go trick or treating tonight. Hope everyone has a safe and fun night. Please remember

7 Things You Don’t Know About A Special Needs Parent

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

I found this and found it to be very true. Even though these kids are on such a wide range of what they need and what they can do no matter where you kid is you always feel bad that they are not up to where they should be and other kids their age are. And you still have all the appointments and running to do for them. The worries are mostly all the same.

 

About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.

My 3-year-old son Jacob is one of them.

He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum’s daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.

Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We’ve been in and out of hospitals and doctors’ offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.

Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don’t know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).

Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don’t share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don’t claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I’ve missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a 1-year-old baby do what my son can’t at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for Jacob, “It’s not fair.” Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob’s rare condition. It sounds petty, and it doesn’t diminish all my joy and pride in my son’s accomplishments. But often it’s very hard for me to be around typical kids with him. Which leads me to the next point…

3. I feel alone. It’s lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it’s so not what my world looks like (check out Shut Up About Your Perfect Kid). It’s been a sanity saver to connect with other special needs moms, with whom it’s not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob’s unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I am scared. I worry that I’m not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob’s future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being “different” in what’s often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob’s disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob’s future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.

5. I wish you would stop saying, “retarded,” “short bus,” “as long as it’s healthy… “ I know people usually don’t mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It’s disrespectful and hurtful to those who love and raise the kids you’re mocking (not to mention the kids themselves). As for the last comment, “as long as it’s healthy,” I hear a lot of pregnant women say this. Don’t get me wrong, I understand and share their wishes for healthy babies in every birth, but it’s become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. “And what if it’s not healthy?” I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

6. I am human. I have been challenged and pushed beyond my limits in raising my son. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I’m just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it’s nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it’s because it can be hard to talk about my son. Which leads me to the final point…

7. I want to talk about my son/It’s hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I’m having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don’t often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn’t mean that I don’t want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like “How did Jacob like the zoo?” or “How’s Jacob’s sign language coming along?” rather than a more generalized “How’s Jacob?” which can make me feel so overwhelmed that I usually just respond, “Good.” Starting with the small things gives me a chance to start sharing. And if I’m not sharing, don’t think that there isn’t a lot going on underneath, or that I don’t want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I’d come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary “performance” difficult or even impossible.

It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is — no matter how they stack up against what “should be.” Raising a special needs child shatters all the “should bes” that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don’t know about a special needs parent… I may have it tough, but in many ways I feel really blessed.

As If I Didn’t Have Enough To Think About

So it was another night of not being able to sleep so I decided to watch The Guardian on netflix. The show about the lawyer who is working for child services. Tonight the subject of Down Syndrome came up. This is something I had not thought about other than they always offer the test when I am pregnant but I never have them done. They just don’t show a close enough yes or no answer for me. They are wrong to much. The amniocentesis I won’t have done. I don’t like the idea of having a needle stuck in my stomach and I don’t like the risk with it. They say it is like 80 to 90% right I don’t remember. It all comes down to the fact that what ever the outcome of the test it is my baby and I am going to keep it. I don’t want to spend months worrying about what might or might not be.

Anyway tonight I am watching it and this subject comes up. I don’t know what it was but in my head I heard RC saying she has a touch of Down Syndrome whatever a touch means. He told me this the night he got back right before he told me everything else. With everything going on I had kind of forgotten about it. This just brought it up like he was sitting here saying it to me. One thing they said about it in the show really stood out and is the only thing I can really remember now thinking about it. Is one problem people have with it is heart defects.

When we first found his daughter he found out she was really sick and had a lot of heart problems. That she had had 3 heart surgeries and had another one that night. She is only 9. I forget what else he told me she had wrong that night and before that. I knew at the time.

I started researching it and I found the march of dimes site and it has a bunch of facts about it on there. As I read threw the list a few things stood out to me when I got to health problems kids with Down Syndrome have.

Heart defects: Almost half of babies with Down syndrome have heart defects (3). Some defects are minor and may be treated with medications, while others require surgery. All babies with Down syndrome should be examined by a pediatric cardiologist, a doctor who specializes in heart diseases of children. They also should have an echocardiogram, a special ultrasound of the heart, in the first 2 months of life so that heart defects can be detected and treated, if needed (2, 3).

Intestinal defects: About 12 percent of babies with Down syndrome are born with intestinal malformations that require surgery (3).

Hearing loss: About 75 percent of children with Down syndrome have some hearing loss (3). Hearing loss may be due to fluid in the middle ear (which may be temporary) and/or defects involving the middle or inner ear (4). Babies with Down syndrome should be screened for hearing loss at birth and again during the first months of life. They also should have regular hearing exams so any problems can be treated before they hinder development of language and other skills (3).

Infections: Children with Down syndrome tend to have many colds and ear infections, as well as bronchitis and pneumonia. Children with Down syndrome should receive all the standard childhood immunizations, which help prevent some of these infections.

How serious is the intellectual disability?
The degree of intellectual disability varies widely. Most affected individuals have intellectual disabilities within the mild to moderate range (2, 3). With proper intervention, few affected individuals have severe intellectual disability (3). There is no way to predict the mental development of a child with Down syndrome based upon physical features.

All information on health and defects is from the marchofdimes.com site

On another site I also seen that it said there was higher chance of miscarriage if the baby had it. Some where it also said that there is one type that the father or mother could be a carry of and that there is a chance other family members could carry it so they all should be told if one finds out they carry it.

As I read this all this stuff starts clicking in my head. His daughter 9yrs has all the heart problems and some learning problems I remember him saying that. I think she has glasses too. They are known to have eye problems too.

Then there is is son 4yrs who lived with us. He had a problem when he was born with his intestinal or stomach and had to have a operation done not long after he was born. He had tubes in his ears because he had a lot of problems with his ears. They took them out why we were together and he still has a problem with hearing. I never seen a child have ear infection like he had with tubes in. He woke up with blood running down the side of his face one morning. His ear always had really nasty brown stuff in it when I met him. I told him he needed to take him to get checked he never did for months til that happen. He is a smart kid but he isn’t really up to level as other kids his age. You can tell he just don’t get things and just goes along with what you say or what he thinks you want him to say. He started prek this year and with in the first month and a half they sent paper work home asking to test is hearing and other things because they didn’t feel he was where he needed to be and had some problems. He never turned them papers in either. I feel sorry for the kid really. But I couldn’t do anything but tell him and ask him to do these things. I couldn’t take him or sign for them to test him. I hope that they got hold of him and got him to sign or got his mom too now that she is out. But any way. He use to say to me all the time he wasn’t going to go to school and things and that he was going to end up like him working for nothing and working his butt off probably turning wrenches like him. I would tell him not to say that he would hear him and think he couldn’t do it and that we just needed to get him tested and see if there was something wrong and something we could do for him. I told him go tell them what they need so I can do stuff with him. I will make sure he gets test and I will fight and make sure he gets what he is entitled to if he needs help. I am use to it I know how it is done from doing it for my son. He told me how he was sick a lot when he was little and things too. I always thought he kind of looked different than the other kids nothing major but just different. Just something about his face and his stature and stuff. He use to always as old as he was stick his tongue out. He would just be watching tv or playing riding around or walking threw the store if you looked at him he would have it sticking out most the time. I always wondered why. Kids that age just don’t do that.

A few times when we were talking he told me about his ex wife the boys mom having a miscarriage. I thought she had one but I miss understood. It came up again he said no she had two after the boys.

That isn’t just one that is 2 kids with problems out of 4. He has the 9yr old daughter a 7 or 8yr old son then the two boys that lived with us. 4 and 6. That is 2 out of the 4 kids that have had problems that are related to Down syndrome. One we know has it the other no one has ever checked because he didn’t know about her having it until last month. We don’t know anything about he oldest boy because he has not seen him since he was a month old or less maybe 2 months. If they figured out later he had problems he wouldn’t know. So we can’t say he is or isn’t ok. Then you have the older boy here. He is ok but he also told me he don’t think he is really his father. That would explain why he don’t have anything wrong and the other 2 out of 3 do. That could also explain why she had two miscarriages.

I don’t think his oldest that lived with us was his. He is nothing like his dad or his brother. Then he told me that his ex got pregnant the first time they ever did anything. Possible yes. But then he also told me that her friend and him were talking and she had been sleeping with her friends brother up until or right before she got with him. That when she had the baby and when they were together it was very unlikely that it is his baby. But he had just had this stuff happen with his two kids up north and he didn’t want to miss out on being there for this one. there was a chance it was his she said it was so he married her. Then they ended up having the other. I asked him why he didn’t push for a test when she had it to see and he said they were already married she said it was his. He had been there threw the pregnancy and was there when he was born as far as he cared he was his and he didn’t want to know at that point. This could all be BS with everything he has told me and that has happen but I really don’t think it is. I think it kind of explains why they grandparents are the way they are about him and not the younger one too. I think they know maybe knew from the start and haven’t said anything. Now I’m just going on. But I am just trying to make since of this all.

I want to say no this just happen that way and everything is fine. But then at the same time it seems like a lot even though it is little things when you put the little things together you see the big picture and they make more since why things are the way they are. That’s what this seems like to me. It bothers me too because I have just had a feeling since I found out I was pregnant that something just wasn’t right or that something is wrong. I haven’t been able to shake that feeling. I have never had that feeling about any of my pregnancy’s even when I had all the problems with my 2nd. I never thought or felt something was wrong with the baby. After I had my son when I held him for the first time I did feel that something was wrong and I even asked them what was wrong with him. They told me nothing he was fine. But he wasn’t. It took me a while to get anyone to listen but I finally did and he is doing great now.

I wounder about that too the fact that all that is there, my age is a factor in if it could or couldn’t have it, and then the fact that my son has the problems he has. Could that effect it and make there be something wrong or could it end up having both? Is it possible to have both? Now this is something I am going to think about and wonder about for the next 6 months til I have this baby.

Thank you so much for reading all this if you got this far. I would really like to know what you all think. If you know anything about Down Syndrome is it something you think I should worry about? Does all this seem like it could all be from the same thing in both kids? I am going to do more research on it later I know I shouldn’t probably make me worry more but now it will bother me forever I must check it out some more.

P.S. I looked something else up when I was done writing this. If it is what I am thinking and he is a carrier of it then the risk go to a 1 in 20 chance of the baby having it. I am just going to try and forget about it until it gets here and we can know for sure yes or no.