Archive for the ‘Resources’ Category
February 6th, 2010 | 
Author: My brain is a mess, a lot to do with weather, lack of sleep, (kids coughing all night long) sensory overload, eating the wrong things trying to make myself feel better, knowing full well that it will make me feel worse, and the list goes on…and the list goes on. (to the tune of “And The Beat Goes On”) Here I am looking for information and resources to give to people about the “autism cure” what have you. I have found very many articles, positive information and articulate blogs that would be very beneficial to enlightening those who believe that autism needs a cure. But I have to remind myself that a large portion of those people do not want to be “enlightened”, so they can add it to their arsenal of “savior complex” missions without any regard or concern for those, who would so much like for them to see them as real people and just be accepted.
With all of the positive also comes all the negative.
I am not even going to comment on the information that I have found. I will say that the “autism cure” roadshow (I am being sarcastic) is extremely offensive, but I have to admit that there are many people with autism who are doing the same kind of actions and even attacking those in their community. It is all very frustrating. Just bring on the peace! I hold the view of acceptance, I feel the main thing we should be focusing on are things like sensory integration dysfunction, since our sensory issues seem to be the reason we all have such a hard time.
I do question why so many funds are being spent on a “cure” and not resources or building into supportive communities to bring about acceptance and awareness.
I guess the real issue is what is being defined as autism. I know there are a lot of different factors when dealing with the autism spectrum. Those who are dealing with the low functioning autism, having many other developmental issues, I understand wanting to do anything to help their child, me too. Although, Daniel was low functioning at one point in many areas, he has progressed in various areas, so it is different for our situation. I do not want to be so naive to claim I have all the answers. I only speak for myself and those who don’t want a “cure” or feel as if we are some abnormal part of society. We exist, we have for a long time despite the new found epidemic, the gene pool has been swimming for a number of years. It has not just appeared, and we are not a disease.
I have noticed that in a lot of the videos, websites, and blogs that the people are focusing on the outward things.
The obvious, like they were not talking and now they are, or their physical conditions, low muscle tone, the features of their face changed like no more black circles under their eyes, or they now have color in their skin. As I read all of this and see photos for myself, I notice that they are not talking about how the child is thinking.
Has the way that they process information changed?
Do they still study things or come up with different and unique ideas?
Were they on prescription drugs or are they now?
Has their mind been cured?
Then I have other questions that pop in my head about diet.
What kind of food were they eating before?
Were they eating a lot of processed foods?
What about fruits and veggies? (I know that Daniel has had a difficult time with food because of textures and I have had to be very creative in sneaking those things into his food.)
Then I wonder about their previous life.
What kind of activities did they do?
Did they exercise?
Were they watching TV all the time?
Did they play games constantly?
Are the parents or someone now spending more one on one time with the child?
I am just wondering because if they started changing things like that in their life then I would think they would show some sign of progress. If they have a good healthy diet they are going to do better. So what was their lifestyle like before the parents decided to try these options that they are now claiming to have cured their child? When I see their information they make it seem like they did very little and got a huge amount of improvement. I would like to know all of the information. They usually show photos of the child staring or looking void and then pictures now that have them smiling and acting “normal”. But lets be honest we all can do that and convince a world to believe something. It just makes me question the motive.
When people are talking about a cure, are they talking about the outward appearance?
If they look normal, then they are normal? Has the child just found ways to hide their tendencies from their parents so they are accepted? Autistic children know what is going on. They comprehend what is being said about them, so are they trying to make their parents happy? I know that it has been claimed that they are not capable of emotion but I don’t believe that to be true. I just wonder what the children are feeling, do they feel like they had this horrible disease that made their family so upset that now since they are cured they are unable to express themselves in the way that is comfortable to them.What exactly is being cured? That is the question that goes through my mind, maybe someone will answer me.
Anyway I found this blog post and felt that it was very articulate about the autism cure question.
http://chaoticidealism.livejournal.com/75642.html
Posted in 
I know that people are effected differently by disasters and sufferings, I am one of those people who has to shut down a bit in order to function when something like the earthquake in Haiti happens. When things like that happen, I feel it deep in my soul. I get very confused by other people’s reactions and they tend to make me very upset, especially when they seem to respond lightly to a situation.
I don’t know if I am going to be able to explain this very well but I will try.
There are many things that happen on a daily basis that are just horrible, sex trafficking, child abuse, people being abused by their partners, natural disasters, war, starvation, the injustice of orphans not being taken care of or left for dead, I could go on but I do need to stop because I can feel my eyes welling up with tears right now. It makes me so upset and I just want to do everything I can to help every single suffering person in the world. I do not have a savior complex, I genuinely want to help and I try to, it is wrong and that upsets me. If someone crosses my path and needs something I give it to them if I have it, if not I try to find it. There is something inside of me, that says that is the right thing to do and I must do it. I feel if I have something to give then it must be given. Now I do not give everything away, obviously we live in a comfortable home and surroundings.
That is the point, we have all we need and we see no reason to live in excess.
I need to get back to my point, when something like the Haiti earthquakes happen I am consumed with cries, images of people suffering, children starving, people losing loved ones on and on and I have not read the news, I try to stay away from the stories because it makes me immobile. For instance, when the 9/11 attacks happened I found out when I arrived at work that morning, I went back to my desk and just started praying. I heard people screaming, I saw people stuck under debris, I felt people in despair wondering if their loved ones were still alive, this was all in my mind, I had not actually seen the visuals anywhere. Maybe the images are all derived from past movies or experiences. I don’t know but I see them and feel them. I felt the fear of people not knowing what was going on.
I didn’t feel it for myself, I felt it for others.
I was fine, I was at peace, but my soul hurt for those suffering. I could do nothing but pray and once again I find myself in the same position. The happenings of the damns breaking after hurricane Katrina, the tsunami, the disappearances of children in our local area, it all hits me and I have to keep myself away from media. I can no longer go into a constant state of prayer or give the time and resources like I did before, now I have a family and my focus has to be on them. I am trying to find the ways I am able to help and still be functional and here for my family. During the times that I was single I could devote everything to causes and make a small difference. It did not take away the intense pain or emotion I felt for people in need but at least I was doing something.
Now it is different and I am trying to find my balance.
I am also learning how to teach my kids to be aware of the suffering in the world and how we as a family can help. I am not being too pushy because they are young, but I am able to teach them how to give their toys, clothes, time, and most importantly just be aware that the world is not really just our house and there are so many different people, places and things out there to take notice of. I know I am a bit over the top with my emotions when it comes to suffering but there is nothing I can do. I feel it, it goes deep into my bones and overwhelms me.
I tend to get very upset when people seem to forget or act as if it is no big deal.
I remember the day of 9/11 (I am using 9/11 because that was the last time that I was really surrounded by people during a devastation) a co-worker came up to me and said “I am supposed to go on vacation next week, they better not cancel the flights.” I sat there in shock, my heart was burning and my stomach was in a knot. We just witnessed two planes crash into the two towers filled with thousands of people, all that went through my head was what they were going through, what their families were feeling and she was talking about her vacation? I had to walk away and shake off the anger I was feeling, I had to think to myself surely this is how she was handling the stress and fear of this tragedy, she just HAD to be doing that.
I share that because that is one of the reasons for my facebook detox.
I cannot handle reading things like that or people pouring over their lives of work and getting their Starbucks and saying things about getting through to Friday so they can party their way into an oblivion. I know I am harsh but it frustrates me, I know there will always be suffering and devastations such as war and natural disasters but I also know when I need to stay away from people so I don’t get incredibly angry while my heart is praying to God above to fix the injustices in this world.
I am putting up several links that we give to or feel that are good resources to helping those in need.
These are just a few we have given to on a regular basis and others we have given as we are able. There are so many organizations out there whatever we can do to make a small difference, it does make an impact. I did not put up environmental sites but several of the ones I have listed also do things for the environment. I encourage you to research and see where you would like to help, what is it that moves your heart search for it and find the best place for you to make a difference through the means that you feel best suits you. The charityguide gives a great resource of what you can do now at home to make small changes in your everyday life, it also gives ways to get your children involved. I encourage you to not let the things of daily life cause you to forget our world and also stay balanced in your focus. I am working on that one still. 
Are there any resources or links you would like to share please leave them in the comments. I am always searching for new ways to give back or try to help others.
For Haiti I found these links, we do give to World Vision and have given to Compassion in the past, but the others I thought were good resources and may be ones you would like to check out.
https://www.compassion.com/contribution/giving/disasterrelief.htm?referer=105910
http://www.worldvision.org/worldvision/eappeal.nsf/egift-haiti-earthquake-relief?Open
–To donate $10 to the American Red Cross, text “Haiti” to 90999. The amount will be added to your next phone bill. The organization is also accepting donations through its International Response Fund: www.redcross.org
– United Nations World Food Program: www.wfp.org
– International Rescue Committee: www.theIRC.org or call toll free: (877) 733-8433
– Doctors Without Borders: www.doctorswithoutborders.org
– Oxfam: www.oxfam.org.uk
– The fundraising drive of former Presidents George W. Bush and Bill Clinton: www.clintonbushhaitifund.org
Sex Trafficking and others
http://www.polarisproject.org/component/option,com_frontpage/Itemid,1/
http://www.worldvision.org/content.nsf/learn/globalissues-stp
http://www.ipjc.org/links/trafficking.htm
http://www.kiva.org/
http://www.charityguide.org/index.htm
http://www.charityguide.org/volunteer/animal-protection.htm
http://www.charityguide.org/volunteer/poverty.htm
https://secure.humanesociety.org/site/Donation2?idb=1975065172&df_id=1387&1387.donation=form1&JServSessionIdr004=go2y27k5d3.app305a
http://www.theanimalrescuesite.com/clickToGive/home.faces?siteId=3
After I put my posts up regarding abuse, I decided to do some reading on other blogs I follow and it just so happens that a week ago one of the blogger’s did a post on abuse. I am going to put the link below along with another good read.
I have not talked about my childhood in detail.
There are some things to know, my mom has Aspie traits as well it is very obvious she is on the spectrum. She has accepted this and that is why there has been a lot of healing for her and myself. Her parents were not sympathetic to her issues. When my grand mother describes my mom as child she says that she was a loner, she played for hours by herself and felt more comfortable around adults. Her reasoning for this was she was an only child. Although she had a baby brother when she turned 5, and still would spend countless hours by herself, it was because she was the first born and alone for 5 years.
My mother refused to eat.
She was forced to sit at the kitchen table, in the dark, when she would not eat her food, even into the wee hours. She remembers being 4 yrs old and sitting in the dark while her parents were watching the news. She would have melt downs that mainly occurred when she was with baby sitters. She was sensitive to sound, light, food, and people. Her parents were not sensitive to her issues. She was screamed at, beaten, forced to stay in the living room when all she wanted was to be alone in her room. They said she was being stubborn and the only way to get her to stop was to beat it out of her. She couldn’t control herself.
My mom had me at 17 yrs old, she then parented me the way she had been parented.
All my mom knew was to yell, spank, and threaten. Just like her, it didn’t work. I still continued my behaviour, just like her I couldn’t control myself. I do not blame her and I must say my mom did not do near the damage to me that was done to her. She was sensitive to certain things because of what had happened to her. For instance, my sisters and I never were forced to eat anything. She had some pretty terrible things happen like her jaw being broken because she wouldn’t be quiet. That is abuse. (There is a lot more that is both painful and infuriating to hear.) The other things that my mom did confused me but I learned how to not get her upset. I did my best and began making my routine her routine. Anything to keep mom from freaking out.
I just wanted peace, but I had a hard time controlling myself at home and at school.
I will not go into all of what teachers did to me, but I will say I was ridiculed in class, told I was stupid, or told I was just trouble not worth anything. There is no point in talking about it, but now as a parent, I share this so others will be more aware of the care takers of their children. We cannot just sit back, we need to be involved in knowing who the people are that are caring for our children and what is their definition of correction. How are they going to handle your child if they have a melt down? What if your child is having major sensory sensitivity how are they going to handle it? What they may think is a good way to correct, could be considered abuse in the eyes of your child.
I am thankful that at school the only abuse I received was verbal.
But the abuse issue is real and needs to be dealt with. We will do whatever we can to protect all of our children from abuse. We feel strongly that we can educate Daniel, all of our children much better than our current school system. The reason-because we have invested hours upon on hours learning who our kids are.
We have taken the time and will continue throughout their learning progress to educate ourselves.
We do not trust others to put in the time, passion, or responsibility to helping our kids grow and develop in a way that is conducive to their learning style. Daniel has progressed tremendously in the this last year. I have changed my way of thinking and focused on helping him and trying to figure him out instead of just fixing behaviour. I cannot take a risk in another person who may damage him without my knowledge. He cannot tell me, not yet, and I am not about to even consider the possibility of him being abused.
We are not fearful, we are cautious.
The more he is able to communicate the more we will lighten up but for now we feel we are doing the absolute best for Daniel. We are not counting on ourselves throughout their whole school career, right now they are still under the age of 5. As they grow older we will definitely need to look to other sources to help them in their studies. We will rely on other people better suited for teaching certain subjects, we are not against others teaching our children what we do not know. But at this point in their young lives we are their protectors, we are to equip them, and we need to fill them with the confidence in themselves to know what is right for them and what is wrong for them. We may sound like it but we are not “helicopter parents”. (hover closely overhead, rarely out of reach) We do not want our children fearful we want them equipped.
Here are some links:
http://life-with-aspergers.blogspot.com/
http://www.aspieteacher.com/2009/10/the-things-i-saw-as-a-teacher-part-1/
There are so many books I have read and there are so many out there on homeschooling, gluten-free diet, healthy eating, Asperger’s and sensory integration. I have put links to several throughout my different blog posts but I felt these too were great resources to have and share with you. I put the Amazon links to them because you can look inside and check them out. We usually purchase ours used unless we are unable to find it used.
Asperger’s
Sensory Integration
Nutrition/Gluten-free
I only have a cookbook all the other books I read on gluten free were from the library. Here are a few great links.
http://www.mayoclinic.com/health/gluten-free-diet/DG00063
Even if you don’t have celiac disease these are good sites with a lot of info.
Home school
We got the Math & Science for Young Children used, we paid less than half I think we got it on half.com but I can’t remember.
We got this one used too.
There is no need to buy every book on the market but David and I both have “special interests” (ie. obsession) in teaching our children and anything to do with AS. The best thing to do is check out different books and resources and see which ones best suit you. Every person has a different journey, each AS person and child is different and no one should ever feel obligated to do what other people do. Always seek out things and resources that fit your personality and ways that you learn and teach. Be yourself even when trying to find answers. Onward on our journey!