Single___Parent___Life











 

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.



{February 6, 2015}   Lets Talk Vaccines

This in itself is a very hot topic for both parents who do vaccines and the ones who don’t. With the resent cases of the measles it has become a very hot topic. Everyone debating what we should do with the parents who don’t vax their kids. I have seen everything from put them in jail, to fine them, refuse medical services and refuse to let the kids go to school, church, daycare or pretty much anywhere. They should be kept at home like an animal. To not put everyone else at risk. This coming from the ones who have shots. Then you have the group who for whatever reason can’t get the shots. Saying everyone who can should get them to protect them.

First lets talk about the group who give their kids every shot out there. I find it funny that the ones who are so worried and freaked out about this outbreak are the ones who are all for the shots and feel they work so well. If the shots work so well and they are so protected. What are they worried about? If you are up to date on your shots the 10 kids around that aren’t should be of no worry to you. So now we have established the fact that you and your family are protected and no one’s talking bad of you for giving your kids their shots, no one is telling you to keep your kid locked up at home and not to take them shopping, school, church or anyone where else. No one is saying put them in jail. They go about life as normal nothing wrong no worries. No one is refusing medical care to because they have shots.

Then you have the group who for an array of different reasons. Some are to young, some have hiv, some have other immune disorders. Then they say the elderly and that one I don’t understand because shouldn’t they have already had these shots? If they are healthy why can’t they get them if they need them. I would be willing to say a lot of them have probably been exposed to a lot of this stuff and have a immunity built up. But that is a whole other topic that really isn’t relevant at this point.

I understand and feel for this group of people because they are already dealing with a sickness that they are going to have the rest of their life. Rather they were born with it or something happen later in life. But we will come back and visit them in a minute.

For now lets move on. The the group that chooses not to vax their children. They all have their believes, thoughts, and views for why they do not vax their kids. Just as the ones who do vax have their believes, thoughts and views for why they do.

But if the non vax parents say they don’t they are attacked how they are putting everyone at risk. It is their fault we have the outbreaks we have, they are stupid, uneducated and go why they hear on tv look up on line and aren’t reading the right things or they would see they should be giving their kids all these shots. My question is where did the parents that vax get their information from? Tv? inter net? Do they really have more education than the none vax parents? Really do you need to have all that much education to make this decision when it comes down to it? But just because they do not make the same chose you make they are wrong for doing what they feel is best for their child or children?

Most parents reasons for not vaxing their kids is because they feel it causes Autism. There is nothing wrong with that because they can’t give you any truly unbiased information. I am by far no expert on any of this but I have done my fair share of research on the subject for a while when I was looking for answers. I will say it has been a while since I have researched it but still read up on it here and there.

I know that maybe 4 or 5 years ago they had all these reports that were written on how safe shots were and there was no tie between them and autism. That everyone should feel safe giving them to their kids. Then they had to come out and say well the reports were fake the research was never all done like everyone was told. The man who was supposed to do the research just wrote up reports to say basically what was wanted to be heard by the mejarity got paid took the money he was supposed to have used to do the research and split. He was no where to be found to find out how much if any of the research was really done how much of the papers were true if any. But they still want everyone to believe that they are safe don’t worry they are looking into it and keep getting your kids their shots.

I have also read that all thought the shots their self do not cause autism they can trigger it in some children who already have other health things going on that may be underlying that parents don’t even know they have. If kids have a gut problem it could trigger something. If a child has an immune disorder that hasn’t been diagnosed yet it could cause problems, there are others. These are just two that I remember and stood out for different reasons.

What happens is that the body’s immune system is already fighting something we don’t realise. There for it is already weak or compromise and not in full working order. Then we give them not one but sometimes 9 or more shots at one time. Now not only is the body trying to fight what was going on already it is now trying to fight all these other invaders as well. Sometimes it don’t just attack all the stuff we put in from the shots but turns on itself as well and starts attacking its self. This is when we start seeing problems such as autism, learning delays, reactions or whatever.

When I was reading there was also a report that talked about how the vax company knew there was a chance some kids could reactions to the shots or have problems and there was a test they could do that would tell them if there was a chance or how likely of a chance the risk was said to said child before shots were ever given. But they didn’t feel there was enough kids effected to warrant doing the test to all kids before they get their shots. The test isn’t even there for parents to decide if they want to do it before they decide if to vax or not.

Now lets talk about that select group that can not get the shots again for a minute. Why can’t they get them? Because we already know they have something going on that will may cause them to have a reaction or some kind of adverse effect. We don’t want to cause them any harm. That is great no one wants to see anyone hurt intentionally by something if we can prevent it.

But now what about all the kids who have things going on that we may not be aware of yet because they are so young? I mean we start giving kids shots just minutes out of the womb. We give them vitamin K shot and then give them their first hepatitis shot before they leave the hospital at a day or two old. No one thinks twice about what could be going on inside this little helpless babies body. No one thinks twice about pumping full of stuff for its poor little immune system to fight. This poor little thing just came in to this big world full of all kinds of germs it is being exposed to from the time it’s tiny little head emerges into this world. How do we know it hasn’t picked something up it needs to fight off.

Who is to say that this group of people who can’t get shots because we already know that they have something going on is more important than these little babies who are just born and we have no way to tell if they have problems yet or not? And everyone is ok with this. Why is it ok to risk a baby but not the group who we know about? I mean it is a risk not a guarantee that something might happen, right? If the shots are to keep the population as a whole safe and according to most the only way to do that is if everyone gets their shots.

Basically it is saying that one group is more important than the other. As far as I’m concerned no one group is more important than the other to risk giving them something without knowing before hand if they may have a reaction to it. This group is going to refuse them because they don’t want to take a chance and everyone is ok with that. But if someone don’t want to risk giving their child something because they don’t know if there is something going on that could cause problems and they have no way of finding out if there is they are bad parents who need to be locked up and their kids need to be keep home like animals. Just because they don’t want to take a chance on causing their child to have problems suck as immune disorders, learning delays, autism or any number of other things that may be caused by shots such as death. Why are they such horrible parents for not wanting to risk their kids but the group who’s kids can’t get them because of the risk aren’t horrible parents. Isn’t that a double standard?

Now lets talk about the ingredients in shots or what the shots are made up of. The main thing most people talk about if they talk about what’s in shots is mercury. They tell you now that they don’t have it in them so if that is why you don’t vax you now can. Not true now they just put less in them and since it isn’t X amount they can say it isn’t in there. But aside from mercury they use animal cells and tissue and stuff from aborted fetus.

A quick search came up with African Green Monkey (Vero) cells, aluminum, cow products, Cocker Spaniel cells, formaldehyde, human fetal lung tissue cells, insect products, and mouse brains. to just name a few. From the site Procon.org

I often wonder how many people who do give shots look at what is really in them? Again we will come back to this in a few minutes.

I am going to take this time to tell you that I do not vax any more. If I had done my research before I probably would have never given any of my kids any shots. But I never heard of no one questioning shots and them harming their kids. I had no clue that you could opt out of them if you didn’t want to have them. You got your kids shots or they didn’t go to school, play sports, daycare and other things. Your kids have to go to school there for you have to get them their shots. We all got them growing up and we were all fine. So I got my daughter hers when I had her and we kept up with them. Then I had my son and we got his. He was a sick baby after I first had him. He stayed full of congestion and had a hard time breathing a lot. He had problems with his stomach as well. I know he got his first set of shots maybe his second but not sure if it was his second or third set we were so far behind on because he was so sick with the congestion. I want to say it was the second and when we went they gave him both sets at the same time. I really don’t remember because it has been so long a go. I remember he wasn’t 100% over the congestion but the doctor saying they were going to go ahead and give the shots. I remember asking if it was ok and that I thought they shouldn’t have them if they were sick or what and about how many they were giving him at one time. He assured me it was fine and that he was over being sick it was just because he was teething. Shortly after he went from being a happy baby who liked everyone and smiled all the time to being scared of everyone and not wanting to go to anyone but me or his dad. He got to where he would have meltdowns in public. He couldn’t sit in church any more a place he use to snug up to me and sleep for the hour or two we were there or sit and clap to the music if he was awake. He would lay down in the middle of the aisle and cry kick and scream until you took him out. I said something to the doctor about it he said I didn’t discipline him enough. I also had talked to the doctor about things I was already worried about before the shots were given as well. Because he had a 6 month delay or more already. I would say why don’t he roll over why don’t he this or that and they told me he can do it he is just lazy.

I ran into a friend I used to work with and she started telling me about her little grandson. She was telling me how he would sing and dance talk your ear off and was doing so well learning all the things he should be learning for school. She said now he isn’t verbal, he don’t smile any more, he is scared of people and he spends a lot of his time just flapping and spinning. She said he was fine until they got him a set of his shots that he needed and all of a sudden it was like night and day or flipping a switch. He went from one kid to a different kid. I told her what happen with my son she said I should check into it and to research the shots, what’s in them and the controversy around them all. I went home and started researching and I researched for days and nights for probably two years about it and about autism. Because now when I pull up list about autism my son has over half of what’s on each list and most the list have all different stuff on it.

I also like she said looked at all the stuff that is in them. Again she was talking about the mercury, aluminium, and formaldehyde. But then I seen the list of animal cells, fetus cells and things like that and thought how could you just over look these? This is gross and unethical if you ask me. That and all the other research pretty much made my mind up that my kids would not be getting any more shots than what they had and that if I had any other kids they would not be getting any at all. 2 more kids later and that is where we still stand. One that had almost all her shots but the ones you get right before you go to school. One who only got the first two to three sets and two who have had none. If I had found nothing wrong with the shots and felt the kids should have them I still wouldn’t have given them for the simple fact of what is in them.

How can I sit here and say I am a Christian and I believe that abortion is wrong. But then turn around and say but it is ok to inject my child with something that is made with cells and tissue from aborted fetus? Am I the only one that see’s something wrong with that and how the two shouldn’t go together as far as believing it is wrong but it is ok to use stuff from them once it is done? How do you rationalize that and make it ok? Because I can’t no matter how I look at it wrong is wrong and two wrongs don’t make a right. It was wrong to kill that baby and now it is wrong to take it and use it for research or whatever.

Then you have the animal cell and tissue. Again god gave us the animals to eat, use for work, transportation, pets. He did not give us the animals so that we could take their cells and tissue and mix them with our own. Beast are beast and to stick with their kind humans are humans and are supposed to stick with their kind. Just like the two are not supposed to mate. Along the same lines if you did then you are mixing cells and things that should not be mixed. Maybe way off base but the way I look at it. Again no way in my mine can I make this ok? Again everyone wants to boycott this company and bash that one over there because they test on animals, or they keep animals in captive and it isn’t right to keep wild animals in captive. Don’t go to the circus because they abuse the animals so terribly. But oh do what you want to them and take what ever you want from them and use. Because it is ok if you are doing it to make something to inject into my child. It’s now just an animal not something to be treated with compassion or be cared about. Because now it is going to benefit me. Just like it don’t matter that your child could have problems from the shots or die from them, get them anyway to protect my child. Because you might get something and give it to my kid.

Then couldn’t we do the same thing with vitamins that we are doing with shots? Tomorrow I think we should make it a law that everyone has to take vitamins because they are supposed to help keep you from getting sick. If you don’t take them you are at more of a risk of getting sick. So since I take mine I feel you should have to take them as well wanting to or not because if you don’t and you catch something then you are putting others at risk of catching it from you. Now if we tried this everyone would look at you and go your insane I’m not taking them if I don’t want to. The law isn’t ethical it isn’t right we better sue as fast as we can to get that law done a way with. And guess what the vitamens really aren’t going to do any harm if taken. The worse that might happen if you take them and do have a reaction is probably a rash or something simple that you are not going to have to deal with for the rest of your life. There are hundreds of brands out there that you can pick from so if one don’t work for you try another it don’t matter as long as you take them. Or if you don’t like what you have heard about one or what’s in them. But people still wouldn’t want to take them and would fight to do a way with the law.

All the while over here still trying to force parents into giving their kids shots that have all kinds of stuff in them that shouldn’t even be in them. They are a one size fits all no different ones if you don’t like one or what’s in it. The damage it can cause is ever lasting life long complications that child is going to have to live with. To protect everyone from something that most people are never going to get in their life. Take this shot that may mess you up for life to keep you from getting a disease that you will probably never be exposed to that could as well mess you up for life if you get it. But again you will probably never be exposed to it and the medical advancements over history are so much that we can treat a lot of things a lot different than we could when we first started giving shots to prevent them. That is a hard decision to make isn’t it. I can give my kid this shot one quick stick in the arm two seconds to do and it is done and change his or her life forever or I could skip it and know that they will be ok. But risk they might get something. I would rather wait and risk. Really it is like anything else if you know it is going around it is close to where you are or what then you take steps to keep from catching it.

It all comes down to the parents who don’t vax are not pushing the ones who do to stop. They are making everyone aware of a problem they feel is there and letting them go back and do research and decide for their self what is best for their child. The group that can not vax shouldn’t be mad about either sides decision to do what they do. They have made their decision and was free to do it just as either of the other two sides. They should not be mad a parent dose not want to risk their child’s life or well being just as they don’t want to risk theirs. So the parents that do vax should not be making such a big stink over parents who don’t vax. There should be no debate, argument, fight or discussion about it. They are as free as you are to make the best choose for their child again just as you have. If they are bad parents for that then I guess we all are. The ones who do vax for having their child injected with all that, the ones who can’t because really they could but pick not to because they know their risk already and don’t want to take it. The ones who don’t because of risk or what’s in them or both because we are putting them poor kids who are vaxed at risk. No one has yet to explain if they have all their vax and they are up to date how that is. But so they say it is.

I have tried really hard to keep to myself about this and really didn’t want to address the issue because I could really careless what anyone dose with their child. As long as the child is being taken care of and not abused of course. I feel that everyone else should look at it the same. The biggest reason I didn’t want to is because I am just so wore out and tired it just seemed like such a donating task to undertake. It really was because here I sit hours later just now finishing. I have to much other stuff to think and worry about to try and write this and keep it all straight but I think I did it and it is the only thing that has really taken my mind of things for a while in a long time.

Feel free to leave any feedback you would like. But do it with respect for everyone. We can all agree or disagree without being rude, nasty, name calling or making jabs at others.



{June 2, 2014}   He Didn’t Raise His Hand

In my last post I wrote about how the kids did their final play of the season this weekend. They did 4 shows 1 more than the other 2 groups will be doing. They did a special show Saturday afternoon for a group of special needs kids. A Autism special sensory showing.

A Representative from the group came in to talk to them during tech week.  They wanted to think them for doing the show and explain to them what to expect from the kids. So they understood and knew they weren’t just being rude.

My oldest said they asked the them if they knew anyone with Autism and the kids raised their hands who did. She said to me mommy I raised my hand but brother didn’t. I asked right a way what she said when he didn’t and if they asked who they knew that had it and what she said. She said she didn’t say anything and that they asked some of the kids but not her.

I wasn’t surprised that he didn’t raise his hand at all. He don’t know his diagnoses. He was young and didn’t really know what was going on when they tested him. Even now he knows we go to meetings at the school and things but he isn’t there and don’t know that it is any different than any other did in school. For him it isn’t because all the kids in his school’s parents have meetings at the school.

I haven’t hidden it from him I talk pretty openly in front of him about it he just don’t ask or listen to what is going on most the time. He is to busy playing and doing his own thing. I treat him like all the rest of the kids and push him to do all the same things I expect from the other kids. I know he won’t do them all just right or may not be able to do some and that is fine. I just want him to try. I don’t want him to think that he is different and can’t or shouldn’t and I don’t want him to try and use his Autism as a excuse for not doing things or trying things because he don’t want to or because he thinks it might make it a little harder for him.

I don’t want him to feel that there is something wrong with him, less or different than the other kids either. Like now when he goes out and tries to play with the kids around our house and they leave him out or aren’t nice to him. He don’t see it as them doing it because he is a little different or because there is something wrong with him. He see’s it as they have a problem and there is something wrong with them for being mean and treating people the way they are. If he seen it the other way around it might keep him from being as social and friendly as he is and from trying to make friends and things.

The way I look at it there is something wrong with them more than there is him. He isn’t doing nothing but asking to be their friend and to play ball with them. He knows he don’t know how to play but ask them to show him and tell him what he needs to do. Nothing any other child who don’t know how to play something would do. They are the ones who want to exclude him because he don’t talk as plane as they do and don’t know how to do the things they know how to do. I have raised my kids that as long as they are being good to you and are nice and not being mean or nasty and treating you bad you be nice to them and include them if they want to play. That’s how it should be. When we are with friends and their kids they don’t know anything really about him and the Autism but they all play and get along.

So no it didn’t surprise me that he didn’t raise his hand when asked. It don’t bother me that he didn’t and thinks that if people don’t want to have something to do with you when your trying to be nice and friendly. There is something wrong with them not you.

Others may disagree with me on letting him think there is something wrong with the other person for not wanting to have something to do with you. Because I know sometimes people don’t want to have anything to do with you if you have done something you shouldn’t or have been nasty or mean. Lack of better words but we are talking about kids so fits. But my son also knows when or if he dose somethings it makes people not want to be around you and that when you have done something you shouldn’t and they don’t it is him in the wrong and not them. Because he will tell me so and so did this or that and it isn’t nice or it was gross and I didn’t play with them today. Or that he did something and someone got upset with him and didn’t talk to him or play with him. He knows that you need to say your sorry and try to work things out and fix them.

jungle_book_150



I am asking everyone to say a prayer for a little 5 year old boy and his family tonight they need all they can get. God will know who it is. Hold your kids closer and say a prayer for them too.

Tonight the kids had their 2nd stars meeting so I stopped picked my friend and her daughter up and we went. I dropped them off and ended up hanging out by the truck talking to her longer than I planned to. I told myself just drop and go baby was getting fussy and I had my 3 year old at another friends being watched. I was in a hurry to get to him. I got out to let her daughter out and started talking. Wasn’t there long maybe 5 minutes.

I headed home called my friend who had my son and was talking to her. I got about 6 miles from home and I seen a truck to the right of the road stopped. As I got closer I could tell it was in the road. I slowed down trying to figure out what was going on and where the people were I could tell no one was in it and it was in the middle of that lane. As I slowly drove by I seen someone stooped down and a person laying there. You could tell they had been ran over. It was bad. I said to my friend oh my god someone has been hit and it looks like a kid or very small adult but I think it is a kid.

She hung up and called her husband because he had been in or was about to be in that same area on his way home from somewhere else. He said someone said it was a man they didn’t know if it was a teen or adult that had been ran over. Still horrible horrible thing to happen to anyone one but thank GOd it wasn’t a child. I would rather it be me than any child out there. I still was shaken and felt sick. I got my son and came home. We did what we had to do dinner and bedtime.

Later the news came on and my friend called me to tell me it was on the news and what they were saying because she knew I was outside not watching it. Turns out sad but true I was right and it was a child. It was a 5 year old little boy with autism. I they airlifted him to the childrens hospital I am guessing.  His family was there at the volunteer fire department for a boy scout meeting and he got away from them I guess as they were leaving or something and he ran in to the highway.

I am in tears and sick this hits so close to home as my own son is autistic. Father of the year has just pissed me off to the point of leaving the room to avoid a fight. He says how could parents let that happen and this and that about it. I am sure they did not let it happen. Anyone with a child with special needs knows how hard it is to start with. Then when you have them out you are always on edge. But things happen that is out of any of our control. Kids like this do not understand danger and a lot have no fear. It isn’t hard for one to slip away from the most watchful of parents. My son about that age maybe a year older walked away from me and his dad in the store one night. He wasn’t a wanderer or a runner he didn’t like to be by himself or in public or away from us. He always walked along beside me in the store he would hold my hand or my pocket and stay right with us. He had a melt down and I turned my head to get the keys out of the diaper bag and turned back around and that fast he had walked a way  to the point I could not find him. I freaked. I went and asked them to help me find him and everything else.

This little boy may have never been a runner he may have just been trying to play around or follow the other kids and got a little too far from his mom and dad or whoever he was there with. We never know with kids like this what idea they are going to get in their mind or at what moment. Something sets them off upsets them or makes them mad and that new idea comes into their head lets do this instead of this they just do it. They again are not thinking about the danger around.

So please no rude comments or remarks about the parents and what they should have or could have done. That they are bad parents how did they let this happen or anything like that. Lets just all pull together and pray for this little boy and his family. I wish there was something I could do for him and his family but I just don’t know what. I don’t know who he was or anything else right now. Any ideas would be great.



{November 7, 2012}   Afternoon At School

https://www.facebook.com/autismdiscussionpage/posts/389898064423033

 

Afternoon at school for a child with processing difficulties
“The world is spinning and bombarding too fast! I try, and try, until I cannot process any more. Help! My brain is drained, and my energy depleted. It is only noon and I have to somehow make it through the afternoon. Recess is chaotic; let me hide to the side. I have to somehow regroup and conserve, since I have little reserve . Like every afternoon I will have to ”shutdown” to “shut out” the world. As I overload, my senses become heightened, hyper-sensitive, and impossible to tolerate. The sounds, the smells, the chaotic activity around me meshes into confusion. I have to hold it together, and stay calm, as to explode would to bring disaster. I will sit quietly, but stare off. To be aware will overwhelm.

Like most every afternoons I will not remember what happened. It will be a blur. I will withdraw to survive, and gasp for air to not suffocate! I hurt all over, but cannot cry! I feel panic as the bright lights blind my eyes, the voices overwhelm me, and the smells make me nauseous. I can barely feel my arms and legs, let alone use them effectively. I am falling apart as I hold it in. As my coping skills collapse. I will withdraw and hide, sit quietly in my chair and hope that everyone forgets I am there. I want to hide in a corner, wrap up in a blanket, and withdraw to survive. I pray there will be no snags, or added demands, and hope that the teacher doesn’t call on me. .I cannot distinguish between what is said, what I did, or what is happening around me. Please somebody! Stop the world and let me get off!”

Please everyone, always be aware that a full day at school can be very draining and overwhelming. The sensory bombardment, social strain, and academic demands can tax an already vulnerable nervous system. Our world presents too much, too fast, and too intense, for many on the spectrum. Many have delayed processing issues that makes processing slow and taxing. They have to consciously “think through” much of what we process subconsciously and smoothly, with minimal energy. Slow it down, break it down, and give them a lot of breaks to rebound. Their energy supply drains fast, and they must have time to withdraw to regroup. Many have sleep disturbances, dietary concerns, and anxiety issues that leave them with a low reserve starting out the day. If they had a exhausting time the previous day, chances are they still have not replenished to full reserve. Do not pressure, do not demand, and let them pace themselves. Develop a sensory diet with plenty of breaks, and most importantly allow them to escape when needed. Give them a voice, and make sure they know how, and feel safe, to say “no” and “I need help.” As a teacher or aid, help them feel safe in your presence, and trust that you understand. As the day wears on, be aware that stress chemicals accumulate and the child will be drained. Do not pressure or ridicule, but support and reassure. In the mist of chaos, they need to feel “safe and accepted”, and know that they can count on you to support them.

Autism Discussion Page

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From my experiance with dealing with my own son it isn’t just getting threw the afternoon at school that can cause them to feel this way or have this reaction. Reading and reserching it online. A lot of kids will have these same problems just trying to go shopping for a new toy clothes or anything else they may need to go to the store for. They don’t have to even be there for hours or the day. It can hit them as soon as they walk in the door. Everyone rushing around the sounds and smells from everything can send them into overload in a matter of seconds. I know a 5 minute in and out trip to the store would turn into 15 or 20 at times just trying to get him to sit still and go along with me to grab what we needed. He would be trying to leave hide in the clothes putting stuff over his head or just throwing a fit in the cart because he couldn’t get a way from it all. There were times we just turned around and walked out because it was just so busy and he could do nothing but lay in the floor or bottom of the cart and cry. It is one of the hardest things you will deal with as a parent. You feel helpless and have no clue what to do for your child but have to get those one or two things before you can leave. Then if it isn’t bad enough you are trying to calm your child and shop at the same time you get the stares glances smirks and snide mumbles and rude comments as people walk by. Like your child is so horrible and bad and your the worst mom on the planet. They are so quick to pass judgement never thinking about what that family might be going threw or dealing with. I have had times that between his melt downs and all the rude people I cried all the way home or once I got home because it is so emotionally physically and mentally draining just to make a quick trip to the store sometimes.

 



I think this stuff everyone should take the time to read and know even if you dont have a child with autism. As so many kids are being diagnosed with it I am sure you will meet someone with it or see them out and about. This is why we should not judge when we see kids places you never know what the family is going threw or dealing with.

Some days it seems the only predictable thing about it is the unpredictability. The
only consistent attribute – the inconsistency. There is little argument on any level
but that autism is baffling, even to those who spend their lives around it. The c
who lives with autism may look “normal” but his behavior can be perplexing and
downright difficult. Autism was once thought an “incurable” disorder, but that notion is
crumbling in the face knowledge and understanding that is increasing even as you read
this. Every day, individuals with autism are showing us that they can overcome,
compensate for and otherwise manage many of autism’s most challenging
characteristics. Equipping those around our children with simple understanding of
autism’s most basic elements has a tremendous impact on their ability to journey
towards productive, independent adulthood. Autism is an extremely complex disorder
but for purposes of this one article, we can distill its myriad characteristics into four
fundamental areas: sensory processing challenges, speech/language delays and
impairments, the elusive social interaction skills and whole child/self-esteem issues. And
though these four elements may be common to many children, keep front of-mind the
fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will
be completely alike. Every child will be at a different point on the spectrum. And, just as
importantly – every parent, teacher and caregiver will be at a different point on the
spectrum. Child or adult, each will have a unique set of needs.

I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism
is only one aspect of my total character. It does not define me as a person. Are you
a person with thoughts, feelings and many talents, or are you just fat (overweight),
myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be
things that I see first when I meet you, but they are not necessarily what you are all
about. As an adult, you have some control over how you define yourself. If you want to
single out a single characteristic, you can make that known. As a child, I am still
unfolding. Neither you nor I yet know what I may be capable of. Defining me by one
characteristic runs the danger of setting up an expectation that may be too low. And if I
get a sense that you don’t think I “can do it,” my natural response will be: Why try?

My sensory perceptions are disordered. Sensory integration may be the most
difficult aspect of autism to understand, but it is arguably the most critical. It means
that the ordinary sights, sounds, smells, tastes and touches of everyday that you may
not even notice can be downright painful for me. The very environment in which I have to
live often seems hostile. I may appear withdrawn or belligerent to you but I am really just
trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for
me: My hearing may be hyper-acute. Dozens of people are talking at once. The
loudspeaker booms today’s special. Music whines from the sound system. Cash
registers beep and cough, a coffee grinder is chugging. The meat cutter screeches,
babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input
and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is
handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re
mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously
nauseated. Because I am visually oriented (see more on this below), this may be my first
sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes
and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces
off everything and distorts what I am seeing — the space seems to be constantly
changing. There’s glare from windows, too many items for me to be able to focus (I may
compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant
motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell
where my body is in space.

Please remember to distinguish between won’t (I choose not to) and can’t (I am not
able to). Receptive and expressive language and vocabulary can be major
challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you.
When you call to me from across the room, this is what I hear: “*&^%$#@, Billy.
#$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put
your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to
do and what is going to happen next. Now it is much easier for me to comply.

I am a concrete thinker. This means I interpret language very literally. It’s very
confusing for me when you say, “Hold your horses, cowboy!” when what you really
mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is
no dessert in sight and what you really mean is “this will be easy for you to do.” When
you say “Jamie really burned up the track,” I see a kid playing with matches. Please just
tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference,
metaphors, allusions and sarcasm are lost on me.

Please be patient with my limited vocabulary. It’s hard for me to tell you what I need
when I don’t know the words to describe my feelings. I may be hungry, frustrated,
frightened or confused but right now those words are beyond my ability to express. Be
alert for body language, withdrawal, agitation or other signs that something is wrong. Or,
there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off
words or whole scripts well beyond my developmental age. These are messages I have
memorized from the world around me to compensate for my language deficits because I
know I am expected to respond when spoken to. They may come from books, TV, the
speech of other people. It is called “echolalia.” I don’t necessarily understand the context
or the terminology I’m using. I just know that it gets me off the hook for coming up with a
reply.

Because language is so difficult for me, I am very visually oriented. Please show m
how to do something rather than just tell me. And please be prepared to show me
many times. Lots of consistent repetition helps me learn. A visual schedule is extre
helpful as I move through my day. Like your day-timer, it relieves me of the stress of
having to remember what comes next, makes for smooth transition between activities,
and helps me manage my time and meet your expectations. I won’t lose the need for a
visual schedule as I get older, but my “level of representation” may change. Before I can
read, I need a visual schedule with photographs or simple drawings. As I get older, a
combination of words and pictures may work, and later still, just words

Please focus and build on what I can do rather than what I can’t do. Like any other
human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to
be met with criticism, however “constructive,” becomes something to be avoided. Look
for my strengths and you will find them. There is more than one “right” way to do most
things.

Please help me with social interactions. It may look like I don’t want to play with the
other kids on the playground, but sometimes it’s just that I simply do not know how
to start a conversation or enter a play situation. If you can encourage other children to
invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be
included. I do best in structured play activities that have a clear beginning and end. I
don’t know how to “read” facial expressions, body language or the emotions of others, so
I appreciate ongoing coaching in proper social responses. For example, if I laugh when
Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper
response. Teach me to say “Are you OK?”

Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or
whatever you want to call them, are even more horrid for me than they are for you.
They occur because one or more of my senses has gone into overload. If you can figure
out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings,
people, activities. A pattern may emerge. Try to remember that all behavior is a form of
communication. It tells you, when my words cannot, how I perceive something that is
happening in my environment. Parents, keep in mind as well: persistent behavior may
have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and
gastrointestinal problems can all have profound effects on behavior.

Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t
she…..” You did not fulfill every last expectation your parents had for you and you
wouldn’t like being constantly reminded of it. I did not choose to have autism. But
remember that it is happening to me, not you. Without your support, my chances of
successful, self-reliant adulthood are slim. With your support and guidance, the
possibilities are broader than you might think. I promise you – I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view my autism as a
different ability rather than a disability. Look past what you may see as limitations and
see the gifts autism has given me. It may be true that I’m not good at eye contact or
conversation, but have you noticed that I don’t lie, cheat at games, tattle on my
classmates or pass judgment on other people? Also true that I probably won’t be the
next Michael Jordan. But with my attention to fine detail and capacity for extraordinary
focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The
answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements
from today’s children with autism, children like me, lie ahead? All that I might become
won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll
see just how far I can go.
©2005 Ellen Notbohm



{July 12, 2012}   My Big Boy

My middle child my first son is autistic he falls in the Aspergers category on the spectrum. In adtion to that he has comprehension delays speech delays and sensory problems. I always knew from the time I had him something seemed different. I asked them when I held him the first time if something was wrong they told me no. He was always about 6 months behind in the things he was supposed to be doing. I know all kids do things at their own pace but he wouldn’t do anything then all of a sudden just do it all with in days or a week. How do you go from not doing anything to everything I didn’t understand either. They kept telling me he could do it he knew how he was just lazy.

When he was about a year and a half old I had to put him in daycare they started telling me he was behind and he should be doing things. They were really worried about his speech. They didn’t do testing for it but they said I should take him somewhere and get him tested. He could say words but he could not communicate with you when he needed or wanted something. He would get really upset and frustrated with things he couldn’t do or when he would try to get you to get him stuff. But if I said a word to him he could say it back. His brain just couldn’t put them together or let him get out what he wanted to say it seemed.

At two they finally got him in to be tested it was so frustrating to me because they acted like it was my fault and that he was fine. They told me his problem was behavioral because when they would say a word he could repeat it back. they said I didn’t make him listen and do what he needed to be doing. I let him get a way with to much. I told them I could teach a bird to repeat words to me but that didn’t mean that he could tell me what he wanted or what was wrong with him if something was bothering him. They just said that he was very active that his motor skills were about off the chart but his other skills were lacking or going to lack because he didn’t sit still long enough to work on them. They gave us a OT and a behavioral therapist to work with him. They were to come to the house once a week and work with him for a half hour to hour each time. Upset and feeling as though we were getting no where I took him home and called the people to set up times for them to come out and work with him.

The Behavioral person came out first we will call her Mrs. T she was great I really liked her. I felt we may get somewhere with her even though that isn’t what I felt he needed. I felt like she knew what she was doing and would help me get him what he needed. The first time she came was just to do some paper work and get things set up so she could come back the next week and work with him. He went into one of his melt downs and fits why she was there because he was playing and his sister did something or took something. He held her down and was pulling her hair out. Mrs. T stopped and showed us something to do with him to try and keep it from happening and to do because he did it. He already got in trouble when he did things like this but she showed us other ways to handle it. Mrs. T came back once a week for a month after that and worked with him. He was doing better but still having a lot of problems because he still couldn’t talk to us like he needed to be doing.

In the mean time the OT lady came out and worked with him a little bit over the course of that month. She just brought with her more bad news and to me false info about my child who she had worked with for less than an hour. She said he was 16 months delayed. A year more than what we already seen and told them about ourselves. I did not see that big of a delay in him at all. The school never said they seen such a delay and Mrs T never seem to think he was that delayed. Then she tells us after working with him for a little over a month she thought he was doing better and she was only going to come once a month from now on. I never seen her after that and he wasn’t doing any more when she told us that than he was doing when she first got there.

With in that first month of working with him Mrs. T and the OT lady asked us what the speech lady said about something. I told them both that he didn’t have a speech person and that they told me he didn’t need it he needed Mrs. T. Of course the OT person didn’t say anything she just said ok and went on. When I told Mrs. T what they said she said I don’t say this very often because most the kids I work with really have problems and I need to be working with them. But he don’t have problems that need me out here he has problems because he can’t communication with you and he needs a speech person. I was so glad to hear her say this because it was what I had been saying all along. I know my kids and they do get in trouble and things but they aren’t bad kids. They do your normal kid stuff and when I get on to them they stop and go on. They don’t throw fits and cause a problem.

It took them forever to get a speech person so by the time they got him one it was only a month or so before he aged out and went to the school board. He was delayed enough with speech they sent him to school all day every day just like the rest of the kids starting at 3. He was in school for 3 years before he started kindergarten. This year was his kindergarten year. They told me last year about half way through the year that he would more than likely fail kindergarten and have to repeat it.

It’s amazing what finding a new school with teachers who love the kids and want to see them progress can do. He had his kindergarten graduation in May. I am so happy for him and proud of him. He has worked so hard and I have fought so hard to get him the help he is supposed to have and to see him do good. He still has things that go on and probably always will. But it is all in teaching him to handle the things that arise.

It’s still hard at times because he is the way he is. Like when we go places he is really good all the time but he will do little things and people look and comment. At times it gets really hard for me to not say anything and I’m sure soon I probably will. They don’t need to be talking about any kid when they don’t know what is going on. The biggest thing with me is when he was little he didn’t know people were talking about him or making comments about him. Now he is old enough to know that they are talking about him and commenting about him. I won’t have him sitting anywhere and know people are talking about him and not say anything. He shouldn’t have to feel that way for something that is out of  his control.

I started this post because of something totally different but then thought I should give a little history to kind of make it make sense. But that I guess will be a different post all together now.



{February 16, 2012}   When I Grow Up

My middle son I call my big boy or little man just turned 6 in September. He has been in public school for 3 years and in the same class with the same teachers and a lot of the same kids. It is a class for kids who have speech problems, and different special needs.

He met a little girl in there the last two years in this class that he really likes and she just loves him. He says this is his girlfriend. They have both decided that when they grow up they are getting married.

He thinks about it all the time and talks about it. He told me when he grows up he is going to have a house built for BB. I said you mean you are going to buy her a house? He said no I am going to have the construction workers build her a house so she has a brand new house. He said he is going to paint a picture of her on the house but she would have to sit and hold still so he could do it. They say they are going to sleep in different rooms and beds. But that they are going to have lots and lots of kids. He asked my 8 year old how many kids she was going to have when she got older. She said 2. He laughed and said we are going to have way more than you. He tells me how cute their babies are going to be and how he is going to change them and play with them and how BB is going to feed them with milk. He still remembers when I was trying to breastfeed his brother a few years ago. He says I’m going to be a good daddy and BB is going to be a good mommy.

We were at the store one day and they had wedding dresses we were looking at. I said do you think that would be a nice dress for BB when you get married? He said no I need something prettier than that for her.

I asked him at Christmas time what he was going to get her for Christmas he said a lamp and a ring. I don’t know why a lamp. I asked him why a lamp and he just said I don’t know because that’s what girls like.

He tells everyone when he grows up and marries BB he is going to be a science teacher and teach lots of kids about science. That he is going to have a big truck like the monster trucks to drive to work in. He is talking about the pickups that look like semis. He seen one somewhere when we were and is stuck on that is going to be what kind of truck he is going to have. Today he was telling us at the parts store he was going to get the mossy oak or real tree looking seat covers for his truck when he got big.

When he was eating dinner he said I can’t wait until I get big and can go to the car store and give the man money and get me and BB a car. I am going to get a big one so we can keep all our babies safe.

The first of the month we were having a birthday party and she was there. All of a sudden he came over to where we were all sitting an talking and was crying his eyes out. I said what is wrong what happen. I thought he was hurt. He said BB said she wasn’t my girlfriend anymore and she didn’t love me and I said I was sorry and I loved her.

I guess he was calling her and she didn’t hear him or wasn’t listening so he got louder trying to get her to look at him or get her to see he was talking to her. She felt he was yelling at her and being mean so she told him she didn’t want him for a boyfriend no more. Her mom went over and fixed things and they were both happy again.

It is funny because they both have sensory issues and they don’t like the feel of different things. They have big issues with clothing and the bands or tags and things in them. Her mom is always complaining that she is running around naked or in way to big clothes. Elisha everyday when he gets home from school or where ever we have been he strips to his boxers or underwear. I say what are you doing he says I want to watch tv naked lol.

I went to buy boots the other day and he went in with me. I was looking and I hear hey mom why don’t you get these they are nice. I turn around and look. They are thigh high boots with spiked heels. I told BB’s mom I hope she don’t like him pick out clothes and stuff for her when they get older lol. She said oh boy they are in trouble because BB has not since of style or fashion. I said we see what his is lol. I told her we now know what to buy them for Christmas and birthdays. Clothes so that they have somethings that are stlyish and in fashion. Or we can just find them a very nice nudist colony to move to.



{February 7, 2012}   Damaged Burdens

Something else I wrote July 2011 after watching 20/20

 

Damaged, dubbly burdened (is dubbly even a word?) this is what they said about children on 20/20 tonight. How do you sit and say a child is damaged or that a family with two children with special needs is dubbly burdened? Let me just say before I go farther. I don’t know if they call these children special needs but to me it’s along the same lines. I would rather call them special needs than damaged. So that is what I am going to call them. So any way. These kids have not been damaged. They have not been in an accident, they have not fallen down, hit their heads, stubbed their toe or even dropped on their heads. So tell me this how were they damaged? You are not born damaged. Something has to happen to you to make you damaged. They are perfect maybe not in your eyes or mine or the other million people in the world. But they are perfect in the eyes of God. As sad as it maybe he made them the way they are for a reason. We may never know what that reason is but I am sure that some day they will. Yes they may be harder to raise than a child with out special needs or even some with. But I would never consider any child a burden. If anyone considers a child a burden then maybe they shouldn’t have had that child/children to start with. But that all comes back to the point that everything happens the way it does for a reason. No matter what anyone thinks about it.

 

 

As I sat and watched all these thoughts and feelings went through my mind. I sat there in tears watching what these children and families are going through. I thanked God that my child is developing so well, that yes he has a lot going on and it is a struggle for and with him sometimes. But also that he isn’t dealing with more than he is. That he will continue to develop as good as he has this far and grows out of it like they say he will. That nothing more pops up in the future. I thanked God for giving me all of my children. special needs and all.

 

As I sit and watch him play, watch him learning something new, riding the horses, loving and playing with his baby brother and caring about his sister I can’t imagine him being any other way. I can’t imagine what it would be like if he was “normal”. I wonder if he would still have that compassion and love for life-like he has now. And everyone says if they could have one wish they would wish that their child would be “normal” and not have the things going on that they have. If I had one wish I would wish to see things through my sons eyes for a day to feel the things he feels, to know what makes things so hard for him, to know why he is the way he is and what he needed to help him develop and move past this. I do not think I could ever wish for him to be “normal” and risk losing the wonder that is him. As far as I am concerned he is “normal”. This is his “normal” this is our “normal”

 

I was at a school today that’s for special needs kids. They deal with everything from ad/hd, to down syndrome, to autism. And they were the happiest most satisfied kids I have seen in a long time compared to what you see in most schools and among the kids who are “normal”. They were well behaved, nice and polite and couldn’t wait to talk to you. They all just seemed so beautiful inside and out. They were cute Noah was crawling around on the floor when they came in they didn’t know we were there. They all just kind of looked at him at first like he was from another planet or something. then in the same instant was on the floor playing with him and hugging him. It didn’t matter to them he can’t walk or talk or don’t really even know what is going on right now. Him and Chey were just friends they had known forever you would have thought. If you had walked in and didn’t know any better you would think they had known each other all their life or at least for the last year or more.

 

I know that the kids on 20/20 are dealing with way different things than my child or the children at the school today. But it all comes down to they are kids they have things going on way beyond their control. They didn’t ask to be this way nor do they enjoy it. They have no choice in the matter and they have enough to deal with and are picked on enough by other kids im sure. They don’t need to hear adults saying they are damaged or a burden to their parents or anyone else for that matter. And it isn’t like it is just someone in passing saying it or they over heard someone saying it. You know when you are little if it is on tv it is true no matter what. How many little boys thought they could fly if they had a Superman cape? How many little girls think they have to be stick thin to be pretty? Because that’s what they see on tv and in books. Not only did some of these children maybe hear these people say it why they were filming but how many watched it on tv and heard them say it. Another one they said to one of the children that’s no life to live or no way to live life. when talking to one of the siblings of the children. Do you not think that, that child isn’t all ready effected by this and probably all ready feeling that they really don’t have a life or a good one. Should you really be telling them that it isn’t and that they don’t have one like that. Isn’t our responsibility as adults to try to make these kids feel better as best we can? Not make them feel worse?

 

Don’t get me wrong I really do enjoy watching 20/20 and have since I was little. But some of the things I heard them say on there tonight I thought should not have been said or could have been put a lot different.



et cetera
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