I can not believe that I am going to travel on my own to an event with mini and micro-man. We love to go different places but I never have gone this far with no help. We did a trial run a few weeks ago and it went alright. Mind you the distance was not as far and the place was not as child friendly as next weeks location. We are going to Marquette to the great cloth diaper challenge.
I choose Marquette's location even thought there are closer locations, none in town, due to the fact it is at a very child friendly place, the UP Children's Museum. I am hoping since I can only change on child at the change and Mini-Man may be too tall to be counted any way, that he could play nearby in the museum.
I am extreemly nervous for all this though. I know that there are going to be at least 25 sets of adults and children not to mention any one else using the museum. The thing is I have learned that these fears can not stop me from taking my boys and doing things I want to do with them. Too many times I have stayed home or left places because I was not sure how Mini-man would do, well no more. I will not set him up to fail but nor will I stay away because I feel he may not be able to handle a situation.
Hopefully I will be able to get back on my weekly post schedule and next week I will be able to say how this all works out.
Light It Up Blue in April and all year to support Autistic people and their families.
Sunday, 15 April 2012
Sunday, 25 March 2012
Sleep
I have a feeling that I have talked about this before but due to the fact sleep in an ongoing issue I am going to talk about it again. This time I am going to talk about the effect on the whole family and not just Mini-man.
I can count the number of times Mini-man has slept through the night. I has put a big strain on the family due to chronic sleep derivation every one right on down to Micro-man.
I worry about what that does to out family, it seems at times like we all have shorter then normal tempers and little interest in what is going on in favor of rest. I worry that the sleep deprivation is causing developmental issues in Micro-man and he will suffer in life due to that. While I due know most of those feeling are just mommy guilt it still is there.
DH is having issues to, mostly in the form he is completely useless when he gets home from work leaving me all the house work. At times I think he is faking how tired he is cause he does get more sleep then me and I am doing more then he does at least physically. All of this is putting a strain on our marriage. I worry how we will survive if any chance we get to do something all we do is sleep and we are not talking due to this.
Then there is me. I find that I am less able to interact or work with the boys when I am this tired I just want to do what is needed and rest. I feel like I am being the worse parent in the world. The other thing it does is makes me almost mean. I am not easy going or as relaxed as normal. I feel bad cause I will snap at people although I try not.
All in all I feel like we are surviving but not thriving. I hope when we get the sleep figured out we can all rest and be better people and a better family.
I can count the number of times Mini-man has slept through the night. I has put a big strain on the family due to chronic sleep derivation every one right on down to Micro-man.
I worry about what that does to out family, it seems at times like we all have shorter then normal tempers and little interest in what is going on in favor of rest. I worry that the sleep deprivation is causing developmental issues in Micro-man and he will suffer in life due to that. While I due know most of those feeling are just mommy guilt it still is there.
DH is having issues to, mostly in the form he is completely useless when he gets home from work leaving me all the house work. At times I think he is faking how tired he is cause he does get more sleep then me and I am doing more then he does at least physically. All of this is putting a strain on our marriage. I worry how we will survive if any chance we get to do something all we do is sleep and we are not talking due to this.
Then there is me. I find that I am less able to interact or work with the boys when I am this tired I just want to do what is needed and rest. I feel like I am being the worse parent in the world. The other thing it does is makes me almost mean. I am not easy going or as relaxed as normal. I feel bad cause I will snap at people although I try not.
All in all I feel like we are surviving but not thriving. I hope when we get the sleep figured out we can all rest and be better people and a better family.
Saturday, 3 March 2012
Autism Island
I feel like my mini-man lives on his own little island some days, Autism Island. I know he is high functioning and for this I am grateful, but sometimes I wish I know what was going on in his world. I feel some days as if I cannot reach him and he is lost to me.
I know my wonderful loving smart boy is in there and wants to come out I just think he doesn't know how and is scared. I try to make the world not so scary but it is hard and I don't know what to do that will make this land we live in a friendlier place. I wonder if I should try and make the trip to Autism Island to bring him here if he cannot cope with the land the rest of the world lives in or if I should let him live on Autism Island, at least until he finds his own way here.
Today is one of the days he is so lost on Autism Island I can not do anything to start to bring him back. Right now his is playing Abby's Flying Fairy School and nothing I have tried has brought him off that computer. I tried to play his preferred game, set up a Thomas the train track, food bribes, and just saying no more and taking the computer away, but the fit that followed could have resulted in major injury so I had to let him back, (I tried to calm him down for 20 mins before giving in) he as self injuring at the time.
While I have come to peace most of the time on what is going on with him I still struggle when I want to interact with him or even just try and not have him on a screen all day.
Right now I just feel like I am the one adrift looking for a land for me and my family where we all can be happy and live together. I wonder if we need something or some one else to help us find this land. I wonder about a puppy, mini-man likes dogs that are smaller then him and I know that dogs have been taught to work with autistic kids in different ways. I wonder if one could help us and bring my family all together once more, I need to do something and get my son and my family back. His visits to the Autistic Island is tearing us apart.
I know my wonderful loving smart boy is in there and wants to come out I just think he doesn't know how and is scared. I try to make the world not so scary but it is hard and I don't know what to do that will make this land we live in a friendlier place. I wonder if I should try and make the trip to Autism Island to bring him here if he cannot cope with the land the rest of the world lives in or if I should let him live on Autism Island, at least until he finds his own way here.
Today is one of the days he is so lost on Autism Island I can not do anything to start to bring him back. Right now his is playing Abby's Flying Fairy School and nothing I have tried has brought him off that computer. I tried to play his preferred game, set up a Thomas the train track, food bribes, and just saying no more and taking the computer away, but the fit that followed could have resulted in major injury so I had to let him back, (I tried to calm him down for 20 mins before giving in) he as self injuring at the time.
While I have come to peace most of the time on what is going on with him I still struggle when I want to interact with him or even just try and not have him on a screen all day.
Right now I just feel like I am the one adrift looking for a land for me and my family where we all can be happy and live together. I wonder if we need something or some one else to help us find this land. I wonder about a puppy, mini-man likes dogs that are smaller then him and I know that dogs have been taught to work with autistic kids in different ways. I wonder if one could help us and bring my family all together once more, I need to do something and get my son and my family back. His visits to the Autistic Island is tearing us apart.
Thursday, 19 January 2012
Things I wish some one had told me
When you are told you child has a devolpemental issue you are told certain things like take time because your child may need extra time, and I will want to see your child more often. I am sure there are many more that I am unable to think of at this time but they are not important, it is the things no one tells you that matter.
I have a list of five things I wish that some one had told me when I found out mini-man has ASD, today I am listing them in hopes to share them with others who may need the information.
1) He will not sleep. This is a fact, I have talked to other parents with children who have ASD and most seem to have this same problem. I have talked to different parents and the only thing that I have heard is a sure fire cure is perscription drugs and I am not ready to go there yet. Until we can do something about this I will be living on Diet Coke
2) You will seek out other Parents advice. It doesn't matter how many Dr. you see or how often you will want to talk to others who have been there and shared a simular experance to you. Sometimes this will be better advice then what the medical professionals tell you sometimes worse. Remember one day other parents will be turning to you.
3) People will try to tell you what they feel you should do and in general do not listen to them. When you tell someone what is going on in your life with your child they will want to help you fix the problem and give you advice most of the time this will not work for you child. The people mean well and may even be your parents but they do not live with your child and most likely do not live with you or have a child with the same problems as yours. The major exception to this is parents who have a child like yours and if they have workd on the same problems.
4) You know your child and what works for them. Trust yourself. I know that the experts say you should do things one way and you try but it doesn't help but you try a different way and it works do it your way. I wish I could tell all parents this. You are a good parent and you love you child(ren), You know what they are able to do, what they can't do, what you are teaching them, and what they are unable to handle, work with this and forget what the experts say they do not know your child.
5) Do not feel guilty if you can not afford, do all the treatments and therapies you want, as long as every one survives then all is well. If you live in a state like MI your insurance may not cover all conditions and ASD is one and therapy, and treatments add up. This is the one that I just learned. I want to help mini-man how ever I can and will try anything just about if I can pay for it. Here are two example one is Vit B12 shots. The Dr. suggested I think about trying them and I wanted to the thing is it cost too much money. The second is a gluten free diet. I am trying that but failing mostly do to people who are unwilling to follow it causing mini-man not to eat what is gluten free and going to others houses and getting what he wants.
Theses are some of the things I wish some one had told me when I got the ASD diagnosis.
I have a list of five things I wish that some one had told me when I found out mini-man has ASD, today I am listing them in hopes to share them with others who may need the information.
1) He will not sleep. This is a fact, I have talked to other parents with children who have ASD and most seem to have this same problem. I have talked to different parents and the only thing that I have heard is a sure fire cure is perscription drugs and I am not ready to go there yet. Until we can do something about this I will be living on Diet Coke
2) You will seek out other Parents advice. It doesn't matter how many Dr. you see or how often you will want to talk to others who have been there and shared a simular experance to you. Sometimes this will be better advice then what the medical professionals tell you sometimes worse. Remember one day other parents will be turning to you.
3) People will try to tell you what they feel you should do and in general do not listen to them. When you tell someone what is going on in your life with your child they will want to help you fix the problem and give you advice most of the time this will not work for you child. The people mean well and may even be your parents but they do not live with your child and most likely do not live with you or have a child with the same problems as yours. The major exception to this is parents who have a child like yours and if they have workd on the same problems.
4) You know your child and what works for them. Trust yourself. I know that the experts say you should do things one way and you try but it doesn't help but you try a different way and it works do it your way. I wish I could tell all parents this. You are a good parent and you love you child(ren), You know what they are able to do, what they can't do, what you are teaching them, and what they are unable to handle, work with this and forget what the experts say they do not know your child.
5) Do not feel guilty if you can not afford, do all the treatments and therapies you want, as long as every one survives then all is well. If you live in a state like MI your insurance may not cover all conditions and ASD is one and therapy, and treatments add up. This is the one that I just learned. I want to help mini-man how ever I can and will try anything just about if I can pay for it. Here are two example one is Vit B12 shots. The Dr. suggested I think about trying them and I wanted to the thing is it cost too much money. The second is a gluten free diet. I am trying that but failing mostly do to people who are unwilling to follow it causing mini-man not to eat what is gluten free and going to others houses and getting what he wants.
Theses are some of the things I wish some one had told me when I got the ASD diagnosis.
Monday, 9 January 2012
Choices
WARNING: this is a very personal post and filled with musing from a depressed mother who is feeling guilty for what her son is living with and wonders if she made the right choices
I am a believe in a women's right to choose whether or not to have an abortion. I know this is not something I would do but I would not take the choice away from some one because I know that some people do this for personal reasons and there for will not judge them. But that is not the point of this post. I want to talk about what I would do if I know what I was getting into with having a special need child if I could have know what life was going to be like not taking into consideration whether or not I could actually have made the choice myself.
I never expected life to be easy for me, I don't know why it is just how I have always felt. Maybe it is from growing up on a farm or being a black sheep of the family. all and all it doesn't matter. The thing is I never expected life to have given me the curves it has. I have one ASD son and an ASD husband and a baby. Life is far from easy or relaxing but I wonder sometimes what it would have been like had I not had my ASD son.
They know that there is some sort of genetic link in Autism, and I was even offered a amniocenteses to see if my baby has it but I declined due to the fact that it would not make a difference to me. I would love him either was and would not end the pregnancy, and life will go on.
All this being said I wonder sometimes late at night if it was far to my son to let him be born and struggle with life like he is going to and already is. I know that in the end things will work out the way they are suppose to. Who ever is watching over us has helped me find some sort of strength that I never thought that I would have or need. I do not what my son to need to deal with what I have dealt with and I want him to have a much easier and better life.
The other thing I wonder is will he be able to live a life on his own and do things on time. Will he be able to start kindergarten when he is 5, will he be able to go to college, get married or even live on his own? I wonder what his life will be like or even if Mini-man will have a good quality productive life or will he need some one to take care of him his whole life and forgive me for saying this but drain the life out of me for ever? I love him but it is very tiring and stressful not to mention draining of any of my wants and dreams for him and myself to take care of him.
I have talk to many parents who has ASD children and we all love our children and would do any thing for them but still I wonder if the kindest thing we could have done our children is to not have given birth to them. I have been thinking about this for many days now and still have no answer. The thing is for me I feel that I have gained so much from Mini-man I will say that I do not wish to have done anything different and if I could go back and redo the chioce to have him I would still have him even if abortion was something I could do.
I love my mini-man and while life may not ever be easy or like a ":normal" life I feel that it is his and it is a happy life if the amount of smiles and giggles we get on daily basis is any clue. I can only do what is possible to help him and give him the best life possible.
I am a believe in a women's right to choose whether or not to have an abortion. I know this is not something I would do but I would not take the choice away from some one because I know that some people do this for personal reasons and there for will not judge them. But that is not the point of this post. I want to talk about what I would do if I know what I was getting into with having a special need child if I could have know what life was going to be like not taking into consideration whether or not I could actually have made the choice myself.
I never expected life to be easy for me, I don't know why it is just how I have always felt. Maybe it is from growing up on a farm or being a black sheep of the family. all and all it doesn't matter. The thing is I never expected life to have given me the curves it has. I have one ASD son and an ASD husband and a baby. Life is far from easy or relaxing but I wonder sometimes what it would have been like had I not had my ASD son.
They know that there is some sort of genetic link in Autism, and I was even offered a amniocenteses to see if my baby has it but I declined due to the fact that it would not make a difference to me. I would love him either was and would not end the pregnancy, and life will go on.
All this being said I wonder sometimes late at night if it was far to my son to let him be born and struggle with life like he is going to and already is. I know that in the end things will work out the way they are suppose to. Who ever is watching over us has helped me find some sort of strength that I never thought that I would have or need. I do not what my son to need to deal with what I have dealt with and I want him to have a much easier and better life.
The other thing I wonder is will he be able to live a life on his own and do things on time. Will he be able to start kindergarten when he is 5, will he be able to go to college, get married or even live on his own? I wonder what his life will be like or even if Mini-man will have a good quality productive life or will he need some one to take care of him his whole life and forgive me for saying this but drain the life out of me for ever? I love him but it is very tiring and stressful not to mention draining of any of my wants and dreams for him and myself to take care of him.
I have talk to many parents who has ASD children and we all love our children and would do any thing for them but still I wonder if the kindest thing we could have done our children is to not have given birth to them. I have been thinking about this for many days now and still have no answer. The thing is for me I feel that I have gained so much from Mini-man I will say that I do not wish to have done anything different and if I could go back and redo the chioce to have him I would still have him even if abortion was something I could do.
I love my mini-man and while life may not ever be easy or like a ":normal" life I feel that it is his and it is a happy life if the amount of smiles and giggles we get on daily basis is any clue. I can only do what is possible to help him and give him the best life possible.
Tuesday, 20 December 2011
Dr visit results.
So Alex went to the Dr. yesterday and I ended up talking to him for over 1 hr and I would say somewhere about 2 hr. We spent a lot of time talking about the missing muscle in his chest that is part of a rare abnormality called Poland's syndrome that he has. We also talked a lot about his inability to fall asleep and stay asleep which unfortunately is very common with children on the autism spectrum (ASD), we touched on the aggression issues he has been having, and finally we talked about ways to treat the ASD symptoms.
First he wants to get his vit D levels up to at lest 80 to 100 that in itself is going to be a challenge, but there is some research that show that low vit D levels increases ASD symptoms and I know he has low D levels I am willing to try this.
The next thing was try to put him on a completely gluten free diet. This one I am on the fence about, I know that some children have had improvements on a gluten free diet but I am not sure I want to it is hard enough being dairy and soy free and I am worried about nutrition deficiencies. I am giving it some thought through and looking to see how realistic this is. I am not finding to much research that is giving a positive spin to this lately. So I am not sure this is going to work.
On the other hand with this I may give it a try due to the fact that he has immune labs drawn that show he has issues with some of his immune numbers related to his intestines and his repository system that show he may have a sensitive stomach. I am really on the fence about this, my only thing is I want to do the best for him and make him feel better. I wonder if these numbers will help people who are no careful about what he is eating be more careful because they do not want to hurt him and will stop giving him cheese and milk. product along with soy.
The last thing that was suggested was methyl B-12 shots. They would be an out of pocket expense and I would have to give them at home which I have no problem doing, The thing is this is an experimental treatment and I can not fund much info. I wonder if it worth it to try the one person I told about it says the Dr is full of shit and think every thing can be fixed by a vit or probiotics and diet. The thing is I don't think she realises how much of an effect diet has on autistic children which makes me believe that there may be a nutritional compound in it.
All in all I feel lost. I am going to write more about The B-12 as I do more research and thinking
First he wants to get his vit D levels up to at lest 80 to 100 that in itself is going to be a challenge, but there is some research that show that low vit D levels increases ASD symptoms and I know he has low D levels I am willing to try this.
The next thing was try to put him on a completely gluten free diet. This one I am on the fence about, I know that some children have had improvements on a gluten free diet but I am not sure I want to it is hard enough being dairy and soy free and I am worried about nutrition deficiencies. I am giving it some thought through and looking to see how realistic this is. I am not finding to much research that is giving a positive spin to this lately. So I am not sure this is going to work.
On the other hand with this I may give it a try due to the fact that he has immune labs drawn that show he has issues with some of his immune numbers related to his intestines and his repository system that show he may have a sensitive stomach. I am really on the fence about this, my only thing is I want to do the best for him and make him feel better. I wonder if these numbers will help people who are no careful about what he is eating be more careful because they do not want to hurt him and will stop giving him cheese and milk. product along with soy.
The last thing that was suggested was methyl B-12 shots. They would be an out of pocket expense and I would have to give them at home which I have no problem doing, The thing is this is an experimental treatment and I can not fund much info. I wonder if it worth it to try the one person I told about it says the Dr is full of shit and think every thing can be fixed by a vit or probiotics and diet. The thing is I don't think she realises how much of an effect diet has on autistic children which makes me believe that there may be a nutritional compound in it.
All in all I feel lost. I am going to write more about The B-12 as I do more research and thinking
Saturday, 10 December 2011
A new View
I hate the thought of having a "Special Needs" child. I do not think my son has any thing wrong with him. I do know that he is not like every one else but but I do not feel like this is a bad thing.
The "Autism" label has been driving me nuts and causing an increase in my depression, and I do know that my son will need therapy to be able to function as he gets older so I am not stopping therapy.
I was looking back over the emotions I have gone through since hear the words "Falls on the Autism Spectrum" and I realised I have tried to control it, fix him, figure out what I did wrong to cause this, and and thrown a pity party for myself. The thing is none of this has helped me feel any better or help Mini-man at all.
My new goal is to find fun and humour in every day life with him but I have to go now cause Mini-man is going to take over the computer I will write more funny stories soon
The "Autism" label has been driving me nuts and causing an increase in my depression, and I do know that my son will need therapy to be able to function as he gets older so I am not stopping therapy.
I was looking back over the emotions I have gone through since hear the words "Falls on the Autism Spectrum" and I realised I have tried to control it, fix him, figure out what I did wrong to cause this, and and thrown a pity party for myself. The thing is none of this has helped me feel any better or help Mini-man at all.
My new goal is to find fun and humour in every day life with him but I have to go now cause Mini-man is going to take over the computer I will write more funny stories soon
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