Tag Archives: Autism Acceptance

Happy Easter/Sunday!

I am of few words lately, however; that does not mean I do not have a lot soaring and brewing through my mind. As a matter-of-fact I am in a sort of frenzied state of mind at the moment –too many things happening at once. My thoughts are making so many different connections and I am overcome with emotions about several things, it makes it challenging to get my thoughts out fluently. It is frustrating and exciting at the same time. Instead of attempting any sort of coherent thoughts I shall simply wish you a wonderful Easter and Sunday then, head to the airport because David is going to be gone for a week for work. This may be quite an entertaining week. :-)

Hope you have a wonderful day from all of us here!

 

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Quality Of Food Is A Privilege

Forewarning, this is a bit of a rant, so I will admittedly say I wrote it in an emotional state and I may sound contradictory and/or quite enthusiastic in my execution of words … I possibly get distracted then, focused again. ;-)

I normally steer clear of arguments about food and the any sort of dogmatic perceptions that claim that changing eating habits can heal a person from skin disorders all the way to mental illness. It simply is not true for everyone, every body digests and has chemical reactions differently. We all have sensory uniqueness and preferences that differ from one another. We are all individuals, I will use myself as an example. If I drink a soda the sensory effects drive me batty and cause me physical problems. I do not like carbonated anything it upsets my stomach. The sugary substance coats my teeth and makes it almost impossible for me to concentrate on anything else until I brush them, however; there is a lingering metallic taste that stays. My stomach feels icky, I get a jolt of energy then, crash very hard leaving me with a headache and bathroom problems. It does not matter if I drink a Dr. Pepper or carbonated flavored water I cannot consume them and feel well.

Other people seem to be able to drink these without a problem.

My mother is another example that is interesting, for most of her life she would get sickly eating fruits and vegetables. She had problems with them texturally and physically. Her diet is still quite limited, but as she has gotten older she has been able to add things such as spinach, broccoli, and bananas to her regular diet. It is no secret that I have been and continue to be very health conscious when it comes to food. I think growing up with limited food sources because of funds and because of my mom’s sensory issues, food sensitivities, and negative associations with food in general made me passionate about my kids always having enough food — particularly healthy food. I also, read many books while pregnant about child development and nutrition. I took it as personal mission to feed my kids in the healthiest way I could.

I made all of my kids baby food from fresh organic veggies and fruits.

I steamed them and pureed them myself. They did not have regular sugar items unless it was made with honey for the first four years of their life … I believe I cannot recall exactly when. They still have never had a soda or some sort of fruit juice that is made with sugar. I did not give them very much processed foods and we are still not that big on eating a lot of it. Even the processed foods I did and do get normally have five or less ingredients and you can read them without needing a dictionary or google to search for them. I use coconut milk, water, oil, and any other sort of milks I find like rice, cashew, and almond because Daniel and I cannot drink milk. It makes us sick, however; Daniel can eat regular yogurt but not cheese. I cannot eat regular yogurt, but can eat certain cheese.

Our dairy is very limited. 

We eat in ways that many people do not. I spend a lot of time reading labels in the grocery to ensure we are in fact getting gluten-free, msg free, no high fructose corn syrup (corn suger) types of foods. I have done this since the children were born and I say all of that to express how much articles like this one upset me Chemist says omitting MSG cured daughter’s autism. I am all about healthy eating, if it were possible I would never buy anything processed because it makes me feel better. I agree with many points about diet in the article, however; I find it grossly irresponsible to suggest that autism can be “cured” simply by a change in diet. I am not sure if it is the mother’s perspective or how the author wrote it. It really does not matter, I have had Daniel on an MSG free, gluten-free, limited caisen, no artificial coloring, limited sugars of any kind for many years.

I was strict with the kid’s diet, and I admit to an extreme from the time they were born, until a little over a year ago and guess what, he was and still is Autistic.

However, in the past there were many days when I was thankful to get Daniel to eat ANYTHING! I had to feed him Carnation drink mix for about a year because I could barely get him to eat something unless it was white AND he refused to eat anything that was a crunchy texture and he refused meat, beans, or nuts. I was able to gradually introduce several foods that helped him. Did I see some significant improvement when I put him on a complete gluten free/limited caisen diet, yes. He was able to communicate verbally and his stomach problems were much less. Even recently, I accidentally gave him something that had “traces of wheat” (the one time I did not check, URG! I was very upset with myself.) he lost his words, his whole body basically shut down. He could not walk, his eyes were glazed over and he was in pain. When he eats certain foods with dyes or sugars his anxiety heightens, his sensory challenges are heightened, and he is irritable.

This is true for Ariel, Joshua, and myself too.

Although, there are other factors that could have contributed to Daniel gaining new abilities with his language during that time, he was around four and half or five when we saw a greater increase, connections could have rapidly been made in neural pathways that had not been able to before. That is one thought, there could be multiple factors, but I am not going into them. Though he benefits greatly, he is not cured neither is anyone else in this house. Of course, many people will benefit from eating a healthier diet, but we have to be realistic not many people can afford, are willing, or able to give up certain things in life in order to maintain this dietary lifestyle. It costs a lot to eat healthy! Fresh fruits and vegetables are more expensive and have a shorter shelf life than processed foods. Our biggest living costs is our housing and our food. We have eliminated many things such as cable, we do not eat out very often, or buy clothes at regular price.

I frequent Goodwill or clearance racks to find clothes for these constantly growing children of ours.

We try to keep the most cost efficient phones, packages ,and many other things to ensure that our living environment is sensory and learning friendly for all of us. As well as trying to get the least costly of healthy foods which is a task — grocery shopping is not fun for me and it is time consuming. Many Americans and many more in other countries cannot do this, they do not have the resources to even consider “eating healthy.” They do not have the time to walk around reading labels to see what is in their products. I will say that other countries seem to have a different perspective about their food and may not need to look at labels like we do. Those who receive government assistance have to stretch out each dollar and are looking for the most for their money. That does not make it easy to buy organic or products such as I have mentioned above. I find it frustrating that people assume that it is an easy fix to buy healthy when many people are eating what they know they can afford. From my own experience, I had no connection to my food. I did not know where my food came from growing up.

It was in bags, boxes, cans, our staple meat products were SPAM, bologna, canned tuna, and other canned meats.

The freshest meat we ate was bacon and that was rarity. I have thought about the foods I grew up on and I believe it was the cause of much of my stomach problems, but I had no idea how to read a food label until several years ago. I never thought about where my hamburger came from. I had no idea how animals were farmed or fed, I did not think about it. I think that is a big issue in our country we have no connection to our food or a healthy relationship with it. We are not taught good eating habits, we are bombarded with large portions, processed everything, and then continually marketed to about dieting. No one thinks about how “diet” foods are loaded with sugar and are highly processed causing all sorts of health issues. You can be skinny and unhealthy and you can be larger and healthy. (I am not sure how to word that I do not mean to be offensive so forgive me if that is not a proper way to phrase it.)

I know I am going off on a tangent here, but I think this can apply to many things.

People do not think about Autism. They do not connect to it so they follow the fold like sheep listening and believing whatever someone else tells them, mainly the media. These types of articles send me in an uproar because it is not sharing useful ways to help Autistics. They are making idealistic claims. They are feeding parents and caregivers the perspective that we need to be changed AND it can be as easy as getting rid of MSG! No, No, NO! What does that do to the child? How do they feel if they show any sort of Autistic trait after they have been “cured”? What if they stim? What if they have anxiety? What if they cannot communicate, have a meltdown/shutdown, or they find a new special interest that they cannot tear themselves away from, then what? Will the diet need to be reevaluated? These are the things I think of when I read articles like these.

I do believe that if the diets of people in our country were healthier that we would see a decrease in physical health issues.

I do feel that we would see some mental health improvements. I believe that, I am not going to tell you that you must do it. Or that I am absolutely positive that it will cure all of your ailments because it might not. You could give up all of the processed foods, soda, sugary drinks, candy, anything else, and after several months you may not feel better — you most likely would, but will you be cured of depression, anxiety, ADHD, Autism, or other physical/mental issues? I cannot say. I am healthy, I do everything that they say is healthy for a person and I am still Autistic. I still struggle with anxiety on a daily basis. I still have depression and have to work through those days when the world is all a distortion — isolation consumes me. I still have PTSD episodes and my sensory processing issues get triggered manifesting OCD tendencies at times.

The coconut oil did not cure me.

The clean diet has not cured me. It has not cured my children. I can tell you with certainty that we do much better when we are eating like this. We do not have the severe stomach problems. Our minds feel clearer and we can get through anxiety much smoother. This opportunity to eat healthy should be an option to everyone, especially in a country that is so rich. However, that is not the case. We have families struggling to feed their children. We have children going to school and getting the only meal they will have for the day and some of them don’t even get that! It is outrageous. It is a privilege for me to be able to buy the foods that I do and I do not take it for granted. I was one of those kids growing up without food. My mom did everything in her power to ensure that I was fed, but she starved herself to get me that food many times. She took on jobs at the schools in order to supply me with breakfast and lunch so all she had to worry about was dinner.

I was not hungry growing up, thanks to my mom looking for anyway possible to feed me.

Though, there are many food traumas that I do have, but that is another story. I will say that I knew full well that there were many times when I had no idea if we would have food, water, or electricity. It is one of the reasons why food is a special interest to me. It is also, why I too have done whatever was possible to ensure that my kids had the food they needed. We have been in positions where our pantry and fridge were bare. We have been through circumstances where we sought assistance from the government. We did receive it while I was pregnant with Daniel and Ariel and about a year after. Then, David changed jobs and we made too much, but not enough and that pattern has continued for us. We were blessed to have people in our lives that helped us during those times. We were fortunate also because they saw and understood the importance of our family being gluten-free and trying to eat as healthy as possible. I continue to live as though I do not know if we will have enough money to get the foods that we eat.

I am frugal.

I do not waste, I think about how to stretch out what we have, but my children have never known that feeling of fear of no food or hunger. To assume, that all families can easily adjust to a nutritious life-style and way of eating is naive. When I read things that imply that it is a simple solution to eliminate foods for any family impacted by Autism especially, as a means to a cure. For people in general I get frustrated and reminded of all those people who deserve to have food who do not. They welcome any food, and if they are a special needs family the importance of quality and specific foods is even more challenging to obtain. Many do not have the privilege to consider whether it is locally owned grass fed meat, GMO free, MSG free, minimally processed, no high fructose corn syrup (corn sugar) or completely go vegan. They are overcome with a moment of peace to have a plate of food. Some families do not even have a moment to consider food options.

How can we change this?

How can help people get the foods that would benefit them in some ways? I get frustrated when I see food banks or donation boxes filled with the cheapest low quality foods possible. Why do people do that? I have seen people give these types of foods and I have been in their homes with pantries overflowing with good quality products. It bothers me. I know I have a bunch of things wrapped up in this post. It is something that I care deeply about, but have no idea how to do anything about it. Learning about food and the connections to how it affects our body and mind should be a priority in Autism interventions. I do agree with that, I think it can be beneficial. I feel that offering specific ways to help find quality food/specialized foods on limited funds should be a priority to those in the Autism Community — many of us have a lot of expenses and limited funds. I am neither confirming nor denying that changing a diet will make things better for people, but I think it should be something to consider.

NOT for a cure, but as a means to improve quality of life.

However, I believe that we first need to acknowledge the people who cannot even consider “healthy eating.” That includes children, special needs families, elderly, and those who are disabled. Interestingly, The major players that have foundations to feed the hungry are those who produce GMO products along with being the front runners in our meat/dairy economics. It’s like the cigarette companies paying for “Quit Smoking” campaigns … However, currently, GMO is the only affordable solution to feed the hungry. There looks to be positives on the horizon for more affordable options to eat organic Walmart is bringing in “more affordable” organic products. I think this is huge and with the burst in our desire to eat healthy, understand, and connect to our food I believe there will be more options in our future. Possible solutions like lab-grown meat may become more affordable and a new way to solve world hunger. (I told you that I may get distracted.) I watched this documentary and it gave me many things to ponder A Place at the Table.

Other reads:

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A Day Of Pure Awesomeness!

Yesterday was a fabulous day, it was one of those days when everyone was feeling good and we seemed to be “flowing” as a family. I cannot think of a single day when all of us were feeling at ease and able to do things like we did yesterday — all in one day anyway. Despite the fact that I have had some stomach issues my mental state was rather calm — not feeling overly anxious or as if my mind was in a race with itself! Interestingly, the day before I was in an anxious state that was causing me some serious emotional ups and downs. I was pleasantly surprised to feel so good because we had planned on going to an Easter egg hunt at the Y. The kids have never experienced an Easter egg hunt except when I have done them in our yard. There was a small one at a church we went to a few years ago, but they were still fairly young.

They were very excited and I was excited for them.

I used to love going on egg hunts. My grandmother took me to the American Legion egg hunts when I was little almost every year. My mom really got into those types of things for me too so she always had our home dolled up in decorations and hid eggs and other goodies for me. Now that I think about it I have no idea how she did it because we had no money, especially no extra funds for such things, however; knowing my mom she probably took up some sort of extra work or sewed something for someone to get the extra cash. She always tried to make holidays grand. I digress … I went into a flashback of happy childhood moments. :-)

I was a little concerned about how the day was going to go.

The last few days Daniel has not been feeling too well either and Joshua has had a rough time of it with his auditory processing, more so than usual. I am not exactly sure as to why. It was such a beautiful morning that while I was at the store I decided to get them some bubbles and things to play with outside. I had hoped that this would help all of us with the excited/anxious energy while we waited until later in the afternoon to go to the egg hunt. It worked; we all played outside had bubble fun, and the neighbor gave us a frisbee while the kids played with that David and I had a nice round of badminton. I share that because it is a bit of a big deal to me that David came out to play too. He is not a fan of hot weather or being outside for very long.

After that we geared up to go and everyone was excited, but not too anxious.

The anxiety did not hit Daniel until we got there. He became overwhelmed with all of the kids, the new expereince, he did not understand why we had to wait, or why they did many of the things that they did. I gave him explanations, but the answers triggered even more questions. Because of this he was almost unable to collect eggs. I knew that he really wanted to and would have been disappointed if he did not participate so I finally told him, “Daniel I will answer all of your questions after you get your eggs. I know you want to get some eggs so let’s try and if you want to stop we will stop” He said, “Ok.” He collected his eggs and was glad he did. Ariel and Joshua took off and had a blast.

They had other things to do such as bouncy houses, a petting zoo, and pictures with the Easter Bunny.

While we were walking to the where those things were Daniel started to talk to me, but I could not understand him because he was talking so fast, but quietly. I got on my knees to be at his level so I could him better and he said, “Mom, I think I got overloaded because I did not know what was happening.” This was the first time that he communicated clearly what had caused him to feel anxious outside of our home environment. He has struggled with being able to express himself unless he is at home. I realized that he was also feeling badly about getting “overloaded,” but was not sure where to direct those negative feelings. It was a moment of understanding for myself too. There have been times and still are times when I am so excited and happy to do something, however; when I have no idea or a vague understanding of what is going to happen my anxious feelings overtake my “happy.”

They can cause me to become so frazzled and confused that the thing I wanted to do is no longer a fun thing, but a scary thing.

Growing up I internalized my feelings of frustration, confusion, and attacked myself with negative talk. I would and sometimes still do, breaking patterns takes time, think things like, Why can’t you just have fun? Why can’t you be like other people and just do it? Why can’t you just go with it? I did not have someone there to combat these negative thoughts, feelings, or to clear up my confusion. Quite honestly, I am not sure I could have communicated it which is why this is even more wonderful for Daniel because he did and that makes it possible to help him understand and rightly place these feelings. I expressed to him how amazing it was that he had the courage to try something new. He was feeling upset with himself so I pointed out all of the positive things that occurred.

I reminded him that most people feel anxious or want to know what is going to happen when they try something new.

He was flustered from the crowd of people and kids and all of the kids running around was overwhelming. I told him that many people feel that way too. Lately, when he has been anxious or overwhelmed I have been telling him that many people feel the same things. I give him examples and remind him that he is not alone, what I have seen is a new acceptance in himself. He is finding a sense of peace when I tell him about my own experiences or share others. I shared with him yesterday too on that grassy field and let him know that what he was feeling was ok and that he was not alone. Then, I asked him if he wanted to go on the bouncy slide and all things were happy again. We ran to the slide, but first made a stop to take a picture with the Easter Bunny.

The kids have never had their picture taken with Santa or the Easter Bunny.

It was another first, Daniel was not really into it and kept asking me, “Can it talk?” But he tried, and he discovered it was not too bad though he has no desire to do it again. :-) The kids had a wonderful time on the bouncy slide, they pet animals, Daniel is normally too afraid to touch or get close to any animals except our cat. He actually pet a bunny and got his face close to little goats! He laughed and smiled at the pigs, horse, and the cow. He stared at them with such a jolly face. Ariel and Joshua were having the time of their life. After it was over, Daniel requested to go somewhere else — he wanted to go to the park so he could swing.

We went to the park for over an hour.

Since it was getting into the late afternoon we asked if the kids wanted to go out to eat, I had not thought ahead for making dinner, Ariel and Joshua were all for it, Daniel was not sure until we suggested Boston’s they have gluten-free pizza. After that he was ready to go get some food. I had hoped that all would go well when we got home, but you never know how all of us will need to decompress. It was a lot yesterday and we were all tired. I suggested a bath for Daniel when we got home because I knew that would help him to have that relaxing time. He stayed in there for a while and came out as happy as could be talking and sharing about our day … asking more questions that had not been asked earlier.

David retreated to his room for quiet time.

Ariel, Joshua, and I cuddled on the couch watching some silly shows. We f\each found our calm. Today is going really well so far too, but sometimes the mind is still processing and may need to bring balance in some way that could be in the form of a shutdown or meltdown and that is ok. We need to feel safe enough to let us decompress. We have never been able to do so much in one day. We have never had an entire day expereince where everyone did fine and we did not need to go home, or go home and have a rough time of it for a while. It was fantastic to have everyone participate. I think it helped Daniel by having him involved in the decision making. We gave him (of course Ariel and Joshua too) the choice to try something or not. He was not pressured into doing anything that he did not want to and he knew that at anytime we could go home. He also, made a lot of choices on his own yesterday with positive outcomes. I have no doubt that this built into his self-esteem. That is our day of pure awesomeness as condensed as I could make it. :-)

I will stop and say Picture TIme!

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Experiencing Autism Acceptance In My Community

The first week of Autism Acceptance/Awareness Month has been incredible. I still use awareness because as much as I experienced autism acceptance this week I also, encountered many people who are unaware of autism. Being aware of something implies that you have an understanding, a sort of working knowledge. Several of the people that I encountered do not have this knowledge and they lacked understanding because autism is simply a word to them, or it is a mystery, a complexity to be figured out, and the representation of heartbroken parents and isolated/hurting children. I gave them a face, a personhood, an experience with a “real life Autistic” who could communicate some of the what’s and why’s about autism. In doing this, I was pleasantly surprised – I received acceptance, encouragement, and validation that I have not had in my physical world outside of family members I am close to.

During the months of February and March, I realized that I was becoming more vocal about autism, in regards to Daniel, Joshua, and myself with people.

I was shocked on several occasions when people started conversations with me that eventually led to a topics such as depression, anxiety, ADHD, sensory processing disorder, learning challenges, which I tend to be able to discuss without any difficulties or fear of rejection, but I found myself openly discussing and sharing our personal experience with autism. I even found myself sharing that I am diagnosed Aspergers. I plan on writing a post about why I have been hesitant in sharing my own diagnosis with people in the next few days, but to get to the root of it I have been afraid of how people would respond — I must be overcoming this fear because I have been telling practically everyone I discuss autism with that I am Autistic too! This is a huge piece of self-acceptance for me and it is helping to build my confidence for my ultimate hope which is to share with several of my family members.

Here are a few circumstances that have filled me with hope.

A couple of weeks ago, a woman from my cycle class and I sparked a conversation that started with her going on vacation, leading into seasonal depression among other things, and eventually led into me sharing about Daniel, Joshua, and myself. This openness led her to share about her sister who has a child with severe autism and a specific type of epilepsy. While I do not know her experience, I can relate, empathize, and share similar experiences – it meant something to both of us to share and have that connection. She was very accepting and though she did not say the words “You don’t seem Autistic” I could feel it. I was not offended – I understand that a vast majority of people have no idea what many Autistics go through or what we learned to do in order to cope with social situations and our environmental surroundings.

Quick interjection: I understand that it is challenging for parents/caregivers/family members/people to comprehend that Autistics who can talk or seem “high-functioning” can compare in any capacity with their loved ones or Autistic individuals in their lives who cannot communicate and are diagnosed as severe Autistics. I understand and I am sympathetic; however, I wish we could bridge this gap and find common ground in order to learn from both sides — all of us becoming more aware of personal experiences leading into acceptance and action.

Back to it!

The more people I have shared with, the more that I understand this. I try to simply explain that I can do very well at masking, mirroring, and mimicking my way when necessary, but that it is exhausting and draining. My other hope is to be able to build these types of relationships in my community so I can express to people how challenging social encounters and our environment can be. I know that many of the things I do to survive in social situations are now automatic coping mechanisms that take over. I do not even think about some of them and at times I feel as though I am having an out-of-body experience. I can see and hear myself, but I have no idea what I am saying or why I am saying something. Some of them are good and others are not – for instance, when I start babbling on and on and end up saying/sharing too much. I can work myself into confusion. I am trying to learn the ones that cause me to go into anxious loops or become overwhelmed — the more I am able to identify them and be mindful the more I am capable of having a positive social experience.

Some of my automatic responses caused me intense anxiety and obsessive looping over conversations.

I’ve noticed that my recovery time and looping have shortened the more that I embrace my identity. This is most likely part of the reason for my new openness and ease of verbal communication. I am experiencing a new ability to speak without my words coming too quickly or becoming too jumbled, confused, and frustrated. However, I also know how fragile I can be, so if I have one perceived negative encounter, I could spiral — I know how to process those moments better now, but it still happens. People have no idea. Many would never consider that while I am talking to them I’m spending a large amount of energy trying to be conscious and combing over every word I say in hopes that I am not misunderstood, inappropriate, not offensive, not monopolizing the conversation, or so odd that I get the “look” … you know the look where someone feels uncomfortable and wants to get away from you as quickly as possible?

I have gained a new awareness of these things – it helps with my own acceptance and ability to help myself. 

By saying new awareness, what I mean is that I had no comprehension, connection with mind and body – true awareness. My mind was working so hard on trying to control/understand my social experience that it struggles enough trying to process/filter/analyze/categorize all the sensory, emotional, physical, and the multitude of other non-verbal input. I do a great job at acting when I am having a good week. On a bad week, I usually do not talk, or I am more focused when I go into social settings. I make sure that I am alone as much as possible. People do not know any of this as they only see the hour or two of Angel at her best. It is when I get home that all of that intensity and processing begin to feel safe enough to unleash inside my brain and body. I have not been able to share things like that with people until this week and it has been received in positive ways. A while ago one of the women at the home school co-op messaged me about a woman who was going through the process of getting her daughter diagnosed for autism. She shared with the woman about me and the woman friended me on facebook.

I waited a few weeks for her to contact me, but she never did.

One day, I decided to reach out her. I had no idea about her views on autism so I explained to her about my family and told her that I was Autistic/Aspergers. I shared with her some of our story and experience with Daniel and I offered to give and share any resources I could with her. I approached her with acceptance whatever her views were, but I also made it clear what mine were about autism. She was receptive — we finally met this week and she was wonderful. Her heart is that of a loving mother who wants to help her daughter, but not only that, she wants to understand. She does not want to fix her daughter – she wants to build upon and work with her strengths. It filled me with hope for her family and as an Autistic. She was accepting of me and was appreciative for all that I shared. All week long I have ended up in conversations with people about autism.

The Autism Awareness campaigns around town have put it on people’s minds and it has given many unexpected opportunities to share.

I have found it interesting that several people have approached me with questions. At the home school co-op on Friday, a woman who I had not expected to have any interest approached me with some questions. We had a very good conversation and she shared that she believes that the little boy she babysits is somewhere on the spectrum. It does seem that way after talking to her and I was able to share with her the possible reasons for his responses. She was thankful for my insights and said that she wanted to “pick my brain” (yeah, I had to get past that visual! It was a good thing I understood that idiom). I did not realize how many of the women there had been watching me interact with Daniel. They have said things to me, which confused me and made me wonder what they meant.

I took some of their comments as hurtful and kind of isolated myself.

However, I noticed that after the first initial interaction, they tried to involve me in their own ways. In a group dynamic, especially with mostly women, they sense when one is going astray and will try to get you involved in the group. It can be a good thing sometimes, if I can overcome my instinctive resistance. :-) I was never aggressive with sharing about our lives, but when they asked me questions, I answered them and combated myths in a way that made them think. I was not sure if it truly made them think, but after Friday I believe it planted some good seeds. I did not dismiss them immediately and I listened to their thoughts – I believe this helped make me feel approachable. No question has ever been “wrong” or too much for me, but I do answer as directly as possible in kindness.

Sometimes I am sure that they wished they had not asked me questions about my “special interest” or maybe they did who knows.

In the midst of questions from the woman, I told her that I was Autistic without any hesitation and I explained to her how the Autistic brain processes differently. I used the visuals that flooded my mind in order to help her try to “see” what it feels like — it seemed to help her a lot. I also expressed how each autistic experience can be very different – though we share many similarities, we cannot all be categorized or thought of in the exact same ways for our needs, strengths, desires, or how we learn, express ourselves etc… On Friday, I actually shared with several people about our autism life. I was able to share with people the diversity of autism within our own household, it helped bring awareness of how different autism is for each individual – many people are still not aware of this.

They do not have a working knowing or consciousness of the vast differences within the Autism Community and Autistic individuals.

This needs to be common knowledge in order to bring about the specific needs for each Autistic child and adult. Interestingly, I have discovered several people who are in my workout groups who have worked with Autistics, are currently working with ASD adults/children, or have friends, family with them in their lives in some capacity. It has been a wonderful experience for me after being so hurt and confused by my experience with people and family (Some Of My Story I …) not talking about it or deeming it as a negative. However, I think one of the most reassuring experiences was at Daniel’s music therapy. A couple of weeks ago, the therapist who owns and operates it and I ended up having a conversation that led into me sharing our life and my personal journey of being an undiagnosed Autistic until a couple of years ago.

I had no idea that our story would be inspiring, but apparently it was and she asked me if I would be willing to be interviewed for a video sharing our story.

I said yes without qualms because I have wanted to get involved in our community in some way, but had not found any place that had common autism values. She also shared that she was going to start an autism school in the next school year that uses the “assume competence approach.” I offered to help in any way possible. They are modeling the school after a school in Arizona that uses neurological music therapy. I will not go into it now, but my soul literally sang with joy when she explained to me their plans. Our community is recognizing the need for change, but many people have no idea what that means or what it looks like.

The challenge with any new paradigm is changing the old ways of thinking.

However, I am up for the challenge and look forward to moving forward in helping parents, caregivers, and especially Autistics in my community. Things are fast moving, but there is a lot to do. As I learn and participate more I will share the happenings. :-)  I plan to help with parent support groups as soon as possible. I hope that with David’s community connections we can help this movement in our community from awareness to acceptance, and reveal better ways to take action. This first week of Autism Acceptance/Awareness Month has boosted my enthusiasm for autism acceptance in my community, and ironically it has also given me a much needed boost in my own autism acceptance.

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Cultivating My Own Support Network

There are people who have had great support from loved ones and friends throughout their life. There are those who have managed to find support to help them, such as finding groups, forums, meetings, organizations, and/or through their religion. I have not had that — my life has been rather lonesome and self-reliant. Though I do not want to say I have not received any support from friends or family, I have. However, it has come at a cost — many times I found that my needs were not actually met. I ended up stuffing my needs out of guilt, shame, or obligation. I had to be ok. I had to get over whatever I was struggling with because others needed more support. Or what I was going through was not “as bad” as what someone else was going through.

It felt as if I was either ignored or that I was on some sort of check list for them, and once they felt I was ok, they could move onto their next thing.

It feels very invalidating and because of this, I’ve grown accustomed to doing things on my own. I had to learn as a child to take care of myself and others. My emotional needs were not a priority to the adults in my life. My basic physical needs were met, but many times accompanied with guilt for needing anything in the first place, unless it was the holidays/birthdays. During those times, I was showered with gifts, but there were also times when I hated getting gifts because I knew that they would only be used against me at some point, if I did something wrong or if I asked for something during the year. I am not sure why I expected more support from my family when we discovered that Daniel was Autistic. I am not really sure what I expected at all, other than wanting to talk to them about it, for them to want to learn about it, and try to understand it along with me.

I did expect for people to listen to me, allow me speak about my concerns, and share in my enthusiasm at discovering answers.

I didn’t get that, mostly I received silence and condemnation from my spiritual community. I felt ignored and isolated. I felt as though Daniel was nonexistent to people. I felt alone and questioned myself on many occasions. What if I haven’t prayed hard enough? What if I wasn’t doing enough good in the world? What if I was causing my son to be Autistic? (Technically, I guess you can say that I caused my son to be Autistic since I am too. ;-)) Why did my family refuse to talk about it? Why did people think it was evil? After years of feeling such tremendous fear and pain, I noticed a pattern: everyone in my life was being consistent — except me. The reality of my life is that I have been my strongest and most consistent emotional supporter. Many of the things that I have accomplished have been done on my own. This does not mean that people have not been there and provided the means, resources, or encouragement, but the main source of support that I have longed for has been emotional support.

That means a person’s time, listening with nonjudgmental ears, an open heart and mind, people who make it clear that what I am feeling and who I am matter.

That comes from relationship and connection – that type of support I have had to provide on my own. It took me understanding that in order to move forward in seeking out how I define and need support. I had to accept and understand myself before I could look to others. I had been doing it my whole life, but I never trusted it. I had this lurking feeling that somehow I was wrong for being able to support myself. I watched as people would have people in their life rally around them and no matter how hard I tried I could not keep friends or have that same connection with my family. I did not know what support looked like for me, but I knew I had not had the same kind of support as I witnessed in social settings. Even if I did receive any sort of emotional support it was invalidated by my confusion of actions/words not being consistent, abusive relationships, and/or constant anxiety and depression.

Many times the things that people did as acts of support I found hurtful.

I am different from many people when seeking emotional support. (or maybe I am not?) I do not want physical hugs, I do not want to be touched, I do not want to hear “I love you”, I do not want to be surrounded by people when I am seeking emotional support. It helps having distance with people for me, but I desire to know that they are there. My goodness what do I want?? How is anyone supposed to know? That is what I am still working on, but I can say that it is important to me to feel validated and heard. I also, grew up living to support other people. I grew up trying to make everyone else happy. If I made sure they were happy then, life was calm. If they were not then, life was chaos. In doing this, I learned that my emotions were less. Throughout my life when I had tried to express my feelings, share the emotions that I was feeling seeking that emotional support I felt invalidated and even felt shame or guilt for feeling them.

I learned over time to stop sharing all together.

I learned to stop trying to ask people for support. My ways were not their ways and I was expected to feel grateful and satisfied with the way they gave me support. When I attempted to share with David I was encountered with similar responses until I finally gave up, as I had done with every person in my life. Again, I found myself relying on me for my emotional support. When I felt too overwhelmed I found myself stuffing my emotional needs. I have done that my whole life too. I have the ability to live long periods of time ignoring my emotions or dismissing them devoting my energy to everyone else around me. However, this is very damaging and the emotions eventually come blasting out through meltdowns or I internally implode into shutdowns. This is another reason why I started a blog; I was desperately seeking support – any support.

I wanted someone to be there and let me know that I was not alone in my feelings. 

Over several months David and I have learned to work on our emotional responses. We understand that they are ok, as long as we are not manipulating or trying to cause harm to the other person. Understanding emotional responses has helped me in my expectations with others. I have more awareness of trying to understand them, I am listening and observing with new insights because I now understand that people react for the most part because of their experiences. In observing people’s emotional responses, I have been able to discern what types of people are good for me to try to establish relationships and those who cannot be in my support network. Before I had allowed everyone in then, I eliminated everyone from my circle; now I am able to see a bit clearer and know that there are some toxic people out there for me. There are people who I connect with and are good for me as well. At some point, I had accepted that I was wrong if I did not fit into the “autism mom” groups. 

I felt wrong if I did not fit in with my fellow Autistics. 

I felt wrong for not fitting into my family. I felt wrong for not having friends. All of that was a motivator that caused me to force myself to try to fit in only to feel even more isolated in midst of people. I am not going to lie, it hurts. Even as I type these words out my heart hurts and tears kind of fill my eyes. However, I need to go through this because it helps me to understand that I cannot just pick anyone to be my emotional support. I cannot have people who do not build into me emotionally and/or siphon me for emotional support — they have no desire to have my kind of support. I have had people come along and help me, love me, hold me up, but not for long and like I said earlier, it usually came with a price. I am thankful for those people, but I had to do the work. I was not able to share with them honestly without consequence.

I sat in silence much of time because:

  1. I did not know what I needed.
  2. I did not know what support actually meant.
  3. I was so used to doing things on my own that I did not think about it.
  4. Past experienced proved time and time again that people only gave me the support they wanted or assumed I needed.
  5. Past experience gave me the perception that if I needed support that I was weak.

There are more reasons, but I think you get the point.

After struggling with feeling so alone with trying to find help for Daniel and trying to understand autism, I gave up on people in my “real” life. I looked to the internet to find others like me. I sought people who understood and appreciated my challenges, pains, and talents. I have slowly built into myself, but much of that came from the positive experiences and acceptance that I have received online. Through my virtual life I have been able to gain a more positive perspective about myself through the life experiences that others have shared and some of the friends that I have made online and continue to make. I know that I can go online and find people who have gone/are going through what I have or similar experiences and that helps me feel connected.

I can only take so many social encounters.

However, by cultivating an online network of people, I feel supported, understood (most of the time), and vulnerable, but the relief that comes from knowing others understand what I am sharing is worthwhile. Even when people do not understand but simply “like” or give a virtual hug or something, it helps. I try to do the same for others and support them as much as I can. I think even if someone does have a strong support network with family and/or friends, they can still have moments of feeling alone and misunderstood. Reading and sharing with our community has been a large part of where I find support.

I am using support in the context of,

1. to give aid or courage to
2. to give approval to (a cause, principle, etc.); subscribe to to support a political candidature
3. to endure with forbearance I will no longer support bad behaviour
4. to give strength to; maintain to support a business

I am thankful for the passion that ripples through and the tenaciousness of the Autism community.

It keeps me motivated to stretch my mind and change for the better. It helps me realize that all of us need support differently. During our Autism journey, we have needed a lot of support financially, physically, and emotionally. People have come and gone who have helped us with each of these. However, I found that I am capable of providing a lot of that support for myself. But I definitely need people in my life and I do need encouragement, reassurance, validation — I still need support. I started to create a support network that fit for me. When things seem to be going downhill and crumbling around me, I have found that being able to go online and to see this network flowing it gives me hope. I do not always communicate directly with people, sometimes reading their words is enough to give me a boost. Then, there are other times when I feel left out and disconnected.

That disconnect has enabled me to see how I can support myself and communicate how I need support from others.

I am still learning, but I am getting better. It is interesting that through this past year when I stopped seeking support or understanding from family that they have slowly started to talk to me about autism. I still do not expect anything, but I am happy that they are not being silent. I no longer feel that Daniel is being ignored. I feel validated at times when they ask me questions and no longer dismiss me or change the subject. I understand that I cannot seek support in the ways that others do. I will not seek out groups anymore — it is not for me. I will not discuss on forums — people can misunderstand so easily. I will not try to be friends with every ASD mom — some may be a good fit and others may not. I will continue to seek support in the ways that suit me. There is nothing wrong with how I need support.

I see with more clarity how to ask for the support I need from the people in my life.

I do not look to others to provide my emotional needs that does not mean that I do not need it. It means that I am better at seeing what emotional needs I have, how I can help myself, and when I need to ask others for their support. I accept what they are capable of giving and that is enough for me. I accept that people need time to process. I think that some of the people who seemed so unsupportive in the beginning were in shock, denial, or were confused and misinformed about autism which, made it difficult for them to know how to respond or support me. I do have hurt and feelings of abandonment, but I am healing and I can understand.

I actually think that overall learning how much I can do on my own has been a real eye-opener.

It has built into my self-esteem and gives me the confidence to keep stepping out trying to achieve things I never considered before. I do not deny that I feel incredibly lonely at times, or that my mind wanders in sad thoughts about not having friends and family like other people do, but maybe it is all about timing. Possibly, I needed to accept myself and learn more about relationships before I could establish real life relationships? We’ll see. Each person has to define their needs and how to actively gain the support they need — some of us need help in learning how to do that. :-)

Related reads: 

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“This is Autism” (Means to Me…)

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Last Monday, Autism Speaks told the world that autism is:

 . . . living in despair

 . . . fear of the future

 . . .exhausted, broken parents

. . . lost, helpless, burdensome children

. . .  a national emergency

If that’s not what autism is to you, join us on Monday November 18th for the “This is Autism” flashblog.

~~~~~~~~~~~~

The words above are not new, I have seen them in various ways all over the media and social outlets since Autism became a common word in our household. In the beginning of our journey, those types of words were the dominating ones on the internet. Though, I did not understand at the time what Autism was; I still did not feel these types of things about my child. Now several years later, I have my “official” Autism (Aspergers) diagnosis, and our other son is in the process of receiving his as well.

Those words above and the similar ones like them were contributing factors to a poem that I am going to share. However, before I do I want to say a little more. We live each day with hope and a realistic view of what our children’s future have in store. Their future along with many other Autistic’s, child and adult alike, have promising futures because of what is happening right now. The gathering of voices to make a difference that cause lasting change is what I see. I see technology opening up possibilities that we cannot even image at this time – some of us may be imagining it right now! ;-)

For this flashblog we were to share what “This is Autism” means to you.”

For our household this is Autism …

Questions, questions, and more questions. A flux and variety of sensory continuum’s that may or may not trigger another into hypo or hypersensitivities. Collections, collections, AND more collections. Arguments over whether General Grievous was ever a human. (He was not, he was a reptilian humanoid which, technically is not a human.) Tigger, Elmo, water toys, and batteries covering the counters. The beauty in a raindrop on the glass doors and the wonderment of leaves flying through the air. It is giggles at the sounds of chairs moving across the floor and terrified panic of a buzzer going off.

The ability to understand multiplication, but no understanding of why it would be dangerous leave with a stranger. It is days of routine and preparation for any change. It is beyond amazingly awesome some days and yes, it is exhausting others, but I am not a broken parent or a broken Autistic. I am not going to sugar-coat anything there are days when it is hard and I have written about it – I also, made it very clear that my child – Autism to me – is not a burden. I see happy children who embrace and accept themselves. It is a world of complexity while at the same time appreciating simplicity.

It is outrageous goofiness and distressing anxiety. It is confusion and enlightenment. I cannot write in a paragraph or even in a post all that Autism is to me. Its a poetic quandary reflecting many facets of light and color. A Prism that shines its face on the reality of where our heart and spirit are – it pulls out our innermost parts and that is where we see where we need to grow or we have just embraced something magical in our human spirit.

Autism means something different to me from when I first learned of it … Autism will mean something different for me in the future … For now, right here in this moment, these are the only words I can grab from my mind filled with a multiplex of questions and thoughts to express what Autism means to me…

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I Am The Hidden

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I Am The Hidden 

not enough for this one, you see;
too much for that one,
can’t pass normalcy

but ah, I did learn my crumbled path,
hid behind your broken mask -
cannot speak,
I fear attack!

from my own peers and their looking glass;
then, parents, celebrities, medical broods
(come this way and that,
wasn’t my childhood brutality,
gratification; for your idle chitchat?)
must the bullying continue to brew,
I fit nowhere within your groups!

[I am not alone.]

you say to teach us how to play,
learn your rules,
your myths
your ways
conform my son/daughter for the “right” praise -
just be like you and yours
you say

I did!
I did all that you say,
for me,
a child -
worked into decay
all my odd and feral ways,
I died, I DIed, I DIED that day!

I slip away without a voice,
I cry in silence;
it’s been my choice,
I reach out; to be bit with words,
confused and torn,
social vestibules

I’ve faked my way through your halls,
only to collapse in my solace;
I quietly roam -
I tried to be your normalcy,
you cannot even conform -
your imaginary reality!

I quake behind my Autistic mind,
rejected here,
but accepted at the same time?

I am no brilliant Savant,
I am the ones that are forgotten,
lost
the ones who hurt all alone,
in the perplexed dark

who had no answers;
for their disabling haunts
and pains that were considered so blasé,
even still it happens to this day
hold it in
tuck it away
pretend its not there
while my mind explodes
into anxiety

judgment
ridicule
waiting for acceptance
in this world
from my own and
those who don’t know
a World of life, love, and Belong 

the complexities that live within me
Autism, Abuse, Tragedy
yet, I am HOPE
mixed with Pain
a journey that’s walked a long hard way

I am tears,
and laughs
and fears
my eyes feel all your words,
they soak through;
to the tips of my hairs!
ethereally they fuse
I write them into prose
you’ve been my Muse

gathering my aches blended with Yours
as a parent and Autistic being,
I share your joys, pains, and dreams
we are the same,
yet see so differently
I breathe your air -
I am changed

for better or worse
we share -
as loud
or softly as each needs to be
I am the Hidden,
unknown
unseen
the hidden disability
when you happen to gaze upon me
do not infer,
your intentions -
we do not see;
the same reality/tragedy/black-and-white conformity
I learned from you,
can you learn from[for] Me?

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Autism Speaks – House of Cards – Similar?

Am I comparing Autism Speaks to the Netflix show House of Cards? Why indeed I am. I watched the series just this week and noticed similarities in the politics of one’s personal agenda that led to the underhanded, spiderwebish manipulations, the ego-stroking, strong-arming, and fear-mongering of people and their destruction, without a single thought or care. I have yet, to hear or read the countless ways Autism Speaks has actually helped families – they are a directory of support. They funnel you through all sorts of links (link farm) and can connect you to the services that have shared their link/contact information with them. They do offer tool kits, blog posts sharing the latest Autism news or scientific “breakthroughs”, and other tidbits of information that may be beneficial to people.

However, on a personal level, I honestly have not seen much evidence of their contributions in real-life scenarios.

The local chapters I’ve contacted, in the early years, were happy to direct me to therapists and tried to convince me to jump on board with their local walks and fund-raising, but they could not help me directly with our financial burden and lack of insurance. That is my experience; maybe others have had more beneficial outcomes. After my experience, I pretty much forgot about them because my time was better spent on helping my child in our everyday life. Because they could not help, I did not see a reason to support them. My little bit of money went toward used books so I could learn about Autism, Occupational and Speech therapies, sensory processing disorder, and purchasing the cheap equivalents to the items that I needed to do the therapies.

I still had very little knowledge about Autism Speaks at the time.

Through the years, I have seen the damage that their negativity has caused in the Autism community. I sobbed for days when I saw the “I Am Autism” video. Keep in mind; I did not know that I too was Autistic then. When I watched it, my heart felt like it was being cut into shreds. I thought of Daniel and could not understand how people could say such things especially, in such a terrifying way. For some insight at the time, Daniel was in full on meltdown and self-injurious mode hours and hours at a time not stopping for days. That went on for a few years, but I try not to talk about it unless I feel it will help someone gain understanding. I do not talk about all of the other things that happened either – I won’t.

I was exhausted and desperate and still could not look at my son or Autism in such a negative way.

I wanted the suffering to stop, but I knew there had to be better answers than, medications or “fixing” him. Autism Speaks keeps a nice divide between parents and those who are Autistic. They manage to keep an image of an Autistic child who never seems to grow up. Any chances of their adulthood are bleak, miserable, of no value at best. I believe this is part of their marketing ploy because it helps keep their message on the front lines – practically anyone can empathize with a suffering parent and a child “who seems trapped” inside themselves. It was not a huge public deal when they appointed John Elder Robison to their Scientific Advisory Board. After Suzanne Wright’s recent statement Autism Speaks to Washington – A Call for Action, he has resigned (see I resign my roles at Autism Speaks)

I had great hopes that they would listen to him and see from a different perspective.

I had hoped this would manifest an open line of communication between those who have the money and those who are Autistic  – it seemed as though their efforts were merely token. They have wasted a valuable gift – a voice that can speak for those children and enlighten parents. Not only him, but the multitudes of us who can speak or type or draw or use some sort of technological device to share what is going on in the minds of Autistics. I do not claim that we know every person’s child.  There is no way any person can understand another’s situation fully. Each of us are different, I have two boys on the spectrum, and they are very different. I am very different from my mother, but we do have many similarities and insights.

I find it perplexing that people continue to guess, wonder, and sit in despair about their child (ren) when WE ARE HERE.

We DO have some answers and can be beneficial. What I find incredibly ironic is that people feel desperate, yet they continue to listen to messages that feed their fear. The many Autistics (verbal and non-verbal) offer you hope. We offer helpful, useful, and practical information. I have read from some parents who feel attacked for wanting a cure for their child and I have seen them attacked. I want to share a little from my perspective with no hostility or condemnation toward you. I understand what it is like to watch my child suffer and not have any way to help him. I understand the desire to “fix” and want a child to be able to do “normal” things. I understand the desire to have a “normal” life. I understand not wanting to be exhausted, fatigued, and longing to have a day where you do not feel alone.

I understand the fight you feel everyday and that some days it feels like too much to get out of bed.

However, you do it. You find some sort of strength. You find your hope, you squeeze something out to motivate yourself, and most likely, it is the love that you have for your child. The medical community and professionals who feel they know what is best have bombarded us with information about Autism. I believe that that it is important to take into consideration what the professionals have to say, I also, believe that it is vital to the community that people remain open to hear what Autistics have to say and bring balance. There are also the pseudoscience folks who can give you all sorts of hope. They give you answers and in some cases, these things can work; however, in some cases, it makes things worse. Ultimately, you are looking for hope and answers. Why not ask Autistics? Why not speak to us?

I am very confused by the rejection and hostility that is the community.

I can understand that both sides feel unheard and feel that the other cannot empathize, but that is not true. I am on both sides: an Autistic with Autistic children. I have experienced firsthand the rejection and pain of being Autistic, but not knowing that I was Autistic. Then, rejoicing in finally having answers only to have it stripped from me because of the attitudes and actions from organizations like Autism Speaks. I find it even more confusing that people would give large sums of money to an organization that fails to give funds toward helping Autistics and very little goes into research. I am baffled that people do not question that the founders themselves are professional marketers. They are business people and know how to brand, manipulate media, and redirect the focus or blame.

They have connections and money.  

Many of us in the Autism community are scraping and clawing trying to get services. We are on waiting lists, sitting in IEP meetings. We are praying and pleading that our child(ren) will qualify while these people are going to galas, rubbing elbows with politicians, and playing with large sums of money that will not go toward research to advance therapies, methods, or implement strategies for helping Autistics and their families. I know that I can get lost into my “connections” and thoughts, but the other night while watching House of Cards, I was struck with thoughts about Autism Speaks and their connections with the government. That may sound like a conspiracy theory, but in saying this, my intent is not in that direction.

My true thoughts are Autism Speaks is not helping the people that they claim to be helping.

In the political arena, it seems that money comes in droves when you focus the message on children. I have not dug too deeply into Autism Speaks, but I really do not need to understand the political gains that can manifest from such an organization. Maybe it started out as something else, but as it is in its current state, I would say that it is a brilliant smokescreen for something else. What that is I have not a clue, nor do I care. What I do care about is trying to help people understand that they are not helping the Autistic community by ignoring Autistics. They are not helping families by feeding them fear or promises of cures. Their “scientific” contributions has not brought any great understanding or eased anyone’s suffering.

I have no respect for how they handle their business.

Have they helped people? I am sure they have in limited ways. Many organizations end up helping some people, but I do not think they are in the “helping” business. I think they are in the political financial business. I do not feel that they offer lasting real hope and I do not believe their efforts have made a positive impact on the Autism community. Their name, emblem, and color are so dominating and “pretty” that they have drown out the voices who continue to scream until we are hoarse. They are in Washington D.C. dominating while our small voices are trying to burst through and create a powerful blast to bust open the façade that they have created. Though I cannot speak for anyone else, I believe that many of us Autistic and Alltistic alike want to change the paradigm of how people view Autism.

I do not believe that Autism Speaks speaks for Autistics or parents/caregivers of Autistics – I think they speak for themselves.

I accept that some Autistics wish for a cure. They are unhappy and in tremendous pain. I do not want to dismiss their feelings. I have had my moments of having these types of feelings. I wanted Daniel “healed” when we discovered he was Autistic. However, over the years, I have witnessed huge changes in Daniel since I adopted a more accepting mindset. I have had major changes within myself since I have become more accepting of myself. I cannot say that would work for everyone and I do not speculate that it would. However, it isn’t right that Autism Speaks is the loudest, most powerful voice for those who are Autistic and those who care for those who are Autistic. I am excited to see so many parents speaking up and letting Autism Speaks know that they do not speak for them.

They have hope. They are the change.

I am excited to see my fellow Autistics standing together to make us seen. They are the change. They are hope. Our message should be that of hope and support. People have put their hope into an evasive promise of something – why not invest in real communication, answers, insights, and learn how we can be there for each other. Is that my “House of Cards” argument? Hopefully, not. (play on words) I think something significant has occurred in our society this week that will continue to change the lives of those who are impacted by Autism. I wonder what will happen. I wonder what cards Autism Speaks is going to play, what will be their next move be to appease the masses and continue as usual. It doesn’t matter because the small voices are getting louder.

Some things to think about …

“Many studies have shown that we care more about the threat of bad things than we do about the prospect of good things. Our negative braintripwires are far more sensitive than our positive triggers. We tend to get more fearful than happy. And each time we experience fear we turn on our stress hormones.” ~ Why we love bad news

~

“We have a negativity bias, which is the tendency to give far more information to negative details than positive ones and the confirmation bias, which is our tendency to selectively look at information or see information that confirms our preexisting notions, which is fine except that our preexisting notions are typically negative and therefore, we’re reconfirming our negative expectations.” ~ by PETER DIAMANDIS –  Why We Love Bad News: Understanding Negativity Bias

 

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Our First Autism Awareness Event, Um …

Last night, I took the kids to an Autism Awareness event in town. It is the first time that I have been able to take them for various reasons. It was the first year that I felt that Daniel would be able to go and enjoy himself and want to participate. I was not sure what to expect. I tried not having any expectations. I knew that I was walking into an event where it was called “awareness” and that word can have multiple meanings depending on each person’s perspective. I was not sure if the organization that was heading it was for acceptance or had other feelings toward Autism.

I had done my research about them and by all that I read they seemed to be very accepting.

Though, I still was not sure and being that I had so many negative experiences where we lived before I am very cautious. Little history, I had several churches claim they were accepting only to discover they thought Autism was demonic and/or Daniel needed healing or deliverance. NOT. I also, reached out to another organization that claimed they were there to help Autistic children with therapies, cost of therapies, and connect families for support, only to discover that they were pushing a cure Autism agenda. That is only a couple of experiences I had, I do have a few more, but I think that is enough info to explain my cautious attitude.

I kept my guard up and knew that if I felt or saw any of those types of things that the kids and I would just leave.

Thankfully, it was in a school only minutes from our house, easy to find and it always helps when we do not have to be in the car long. All the kids can get car sick, and Daniel still has moments of car anxiety that can be triggered going to new places. It was at a school in their gymnasium. We had to register when we got there and everything seemed very smooth and positive. The only thing that bothered me was that they had a DJ, blaring loud music that did not seem appropriate for young children, who have sensory issues. We could feel the vibrations out in the entryway. It was thumping and pounding, Daniel started to ask why his body was vibrating and why was it so loud.

I told him that we did not have to stay if it was too loud, but he said that he wanted to go in.

Everyone was very nice, but no one talked to us. They all just looked and smiled. I took it upon myself to take the kids around to play the games and make some crafts. They had a table sitting out with T-shirts to buy, but I was not sure what that was for until later. I was a little confused by everything because it was my understanding that it was an event for families with children who are Autistic and who have disabilities. They said on their website, to come help celebrate autism awareness month by coming to the event and that they provide this program as a service that is for families in our community raising a child on the Autism spectrum. (I paraphrased that.)

Here is where I had expectations.

What I read about the night indicated to me that it was for families raising a child(ren) on the Autism spectrum and to share information and resources offered by the community. No one spoke to us about the dog therapy when we went over, several times, to see the dogs and pet them. They talked to themselves and the dogs just sat there being pet. When I went to the table where the T-shirts were to see what it was about, no one talked to me except to ask what size shirt I wanted. I said that I did not have any cash; she asked if I had my checkbook. I did not. I had not expected to be giving money. I clearly did not understand the purpose of the event. She seemed to not know anything about what the organization offered and directed me toward a several handouts, but her main focus was for the fundraiser.

In my reading of the information on the website, which I read several times, I did not notice the fact that it was a money-raising event.

I could say that was my own confusion, I honestly do not know. Maybe I read things to literally, I do that you know. :-) I was very pleased to discover that they have a positive outlook about Autism. There were several people wearing shirts that had the puzzle type of logo, but the images swirled into words that said, “Autism Embrace the Amazing!” Their organization uses their funds to provide help for families who cannot afford therapies, help with legal issues, getting SSI information and assistance, they help advocate for the rights of individuals with disabilities, and have parent support groups.

Their main purpose is to improve the life of young autistics through support and acceptance.

That made me very happy, and the atmosphere, though it felt odd to me was not negative. I am glad I went and I think the more events I go to the more I will get a feel of how to interact. Possibly, another event that is more directed specifically toward Autistic families will be a better fit. It was a wonderful experience for the kids. They had so much fun playing with all of the sensory toys and running around the huge gym. I do admit, I was a little worried when I realized we were in a school building. I never had to think of it before, but now my mind goes there. What if someone without understanding was to come in and attack solely based on the false perceptions of Autism from media and certain circles. I hate that I was thinking of that, but I did.

I had to scan the gym, look for the exits, think of an escape route, just in case.

I was not paranoid; I only felt that I could not be that naive to believe that everyone is accepting of Autism. That is what all of the negative media has done to me – it has made me cautious and feel that I need to protect my children from ignorance that could turn to violence. I did not think of it long, only to have a plan and move on. Because of that though, when Daniel was digging around in a toy bin for what felt like forever, (he could not decide what he wanted) and I lost sight of Ariel for a moment, I felt anxious. I scanned that gym like a hawk. When I located her, I told Daniel that I would be right back; I did not go far at all to yell for Ariel to come closer. However, when I turned around Daniel was gone.

Again, my eyes scanned the gym like a hawk.

Panic started to set in because I could not see him, finally, I spotted him. He was walking very fast straight for the exit. I could tell that he was in a panic from behind; he was walking faster and faster. I was yelling his name, his hands were flapping, and everyone just watched. I thought that was very strange after the fact. I told Ariel and Joshua to stay there and I ended up in a full on sprint because he was heading out the exit doors, and no one stopped him. :-/ I caught up to him, put my arms around him to give him a squeeze, and then, turned him around. His face was red, tears were in his eyes, and he was breathing heavy. He could not even tell who I was.  I kept looking at him, squeezing his arms, saying, “Look Boo, it’s mommy. I am right here.”

After about the fourth time, he was able to recognize me.

Then, he said, “I thought you left me.” I reassured him that I never leave him and that I was right there. He apparently, did not hear me when I said that I would be right back. I said it three times, but I think it was all too much to process with the noise, toys, and excitement. I found it odd that no one stopped him or tried to stop him after they saw me yelling his name and running. I would have stopped any young child heading toward the exit doors without a parent, but that is me, I guess. He does look older since he is so tall …

I think writing this out indicates that I do have certain expectations.

I did not realize it, but I do. Overall, I am very happy with how everything went. The kids loved it, Daniel enjoyed himself, and the noise did not affect him the way that it used to. Even 6 months ago, we would not have been able to stay very long. We stayed for an hour and a half last night! We all left feeling good. The other thing I discovered was that the event was to help raise money for their Autism Awareness walk that is happening in a couple of weeks. I would like to participate, but I do not think I will be able to. I do feel that it was good for us to get out and try it. It definitely helps me with my social anxiety. I was confused at first, but then, I sat and thought about all I had observed.

I watched the young and older ladies line dance to music like Cotton-Eye Joe and I Am Sexy and I Know It.

It felt off, but I did enjoy seeing some of the kids that were there having a great time dancing. Joshua got his groove on to some songs and then, Daniel jumped into a little moves too. It was great! As I observed the volunteers and some of the other people who seemed to know each other, the words, “This is for them.” popped in my head. I realized that there were sensory toys and stations set up in the gym, but the bulk of the event seemed to be geared toward the people that already knew each other and for those who are not Autistic. I had a moment when I understood the lack of collaboration between autistic adults and autistic events.

It is one thing to read about it from others, it is another thing to experience it. 

While, I fully understand the need to do things that will reach people not on the autism spectrum, I wondered if they would be willing to work with adults on the spectrum. It also, made me wonder what kind of event could be done for us in my community. I see us do a lot of campaigning and activity via the internet, but I have not seen too many activities that are done by Autsitics at a local level. Though, I have only thought of this and I have not done much research. There could be things, I just need to look. However, I do know that in my community there is not anything. I have been in communication with a woman in town who started an Aspergers adult group last year, but it dwindled due to several reasons.

She and I have still been trying to think of activities that would be good for the group. 

However, life has been a bit hectic and full of activity so I have not been able to spend much time on that either. I think I am going to set some goals that will be attainable in the near future with this, but I also plan to set goals for next year’s Autism Awareness/Acceptance month. I plan on reaching out to this organization and meeting with another woman in town that heads up a local support group to get a feel. Of course, my first plan is to get connected and learn who these people are as people without any pressure on myself about these goals I am thinking about. I want to meet others who are working with the autism community in my town. I am hopeful because of the positive attitudes I have encountered so far, in every new social adventured, we have tried.

I am excited because they have been accommodating, accepting, and kind. 

I am not sure where I am going with all of this, but I am processing. I do know that I would like to be more active in the community. I think it would be great if people were willing to listen to an adult autistics locally. Who knows, if I were to speak up maybe I could find others around here who would like to as well. I would like to find more mothers who are autistic themselves, I think it would be beneficial to find more women in my real life, but if that is not the case I would like to be open to other mothers who I could connect with. You never really know who you can find some sort of bond with, it may not be related to being a mother or autistic at all. I could find a friend at the YMCA in one of my classes.

Something has shifted in my thinking that I noticed last night. 

I did not feel so lonely as I looked around and saw everyone talking, laughing, and hanging out. I did not feel hurt when people did not talk to me. I was satisfied with smiles and short conversations. I was not seeking them to understand my son or me. I was simply content and at peace observing, understanding certain dynamics, and enjoying all the children and my children. I was not offended at the lack of “autismness.” I understood what and why they did what they did. I think it sunk in for the first time that if I want something to be “Autism Friendly” that I am going to have to jump in and do something about it. I will be pondering this. Next! I can’t wait to write my next post sharing about all of the awesome things that has happened with the kids this week. It makes my heart overflow with joy when they are happy and proud of themselves!

I feel that last night turned out to be a spectacular evening on multiple levels.

Pictures!

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Autism Awareness/Acceptance Day (Month, Lifetime!)

Hello folks! This year I have found myself feeling the anxiety of the month of April on the first day of March. I do not do well with tension and now that is what Autism Awareness Month represents to me. I already struggle terribly with social situations and relationships. I have had to muddle through all sorts of emotions when it comes to the Autism Community. I have had such penetrating feelings of isolation and belonging that at times I have to walk away to gain my clarity of mind once again. My own journey started with Autism awareness transitioning into acceptance not only for my son, but come to find out for myself!

When Autism came into our vocabulary, it was new. 

I had virtually no knowledge of Autism whatsoever. I had to research, process, dissect, dismantle, research more, and break down an entire mental perspective, process, loop, more looping so on, and so forth. :-) It has taken time, it will continue. I had no idea that my life would become a daily process filled with Autism awareness and acceptance. We are all at different journeys in this process. We all have our unique perspective that is influenced by many factors. I write about my journey and my perspective it is different from my Autistic peers in many ways and it is similar in many ways. I share my perspective as a parent of an Autistic child, some autistic mothers may relate some may not.

10497007-light-bulb-vector-illustrationI have had to and still am in the process of accepting that I am Autistic. 

This is not a bad thing, it has given me such a new outlook on life, and how I see other people and my world. It has answered so many questions that I had about myself. It does not dismiss my challenges or my past that is filled with pains and scars. There are some days that I feel angry because had someone diagnosed me early on my life could have been much different. However, there are no guarantees that it would have been for the better, it could have caused even more struggles. There is no peace in “what could have been’s.” What we do have is the here and now.

And we can do a lot with that.

This year I have realized that I have more empathy toward those who have no knowledge of Autism, or those who are struggling with accepting that it is a part of their life. I relate in new ways to a person realizing that, they are Autistic, through self-diagnosis or receiving their “official” diagnosis.  I see with a different perspective the parents who have just learned that their child is Autistic. I think about how they make their choices to take on the journey of “fighting” it or embracing it. I have come to a place of looking back at my own experience and can apply understanding to others that I could not before.

I am obviously on the side of acceptance, but I will not attack a person who does not agree with me.

I do not have to agree with you to have empathy. I can understand because I have had to go through my own process. In the beginning, it was becoming aware. At times, I become amazed at my own ignorance (may sound harsh) in believing that people know about Autism. I have been baffled when I hear or read people talk about Autism and it feels like the Dark Ages. The reality is many people still do not have an accurate awareness about Autism. There are still many misconceptions, myths, and distorted perceptions.

Media and campaigns are not always the most accurate outlets.

However, they are springboards for getting information out there. In this past year, I have seen many more Autistics writing and sharing their personal journeys. I have read many more blogs from parents who focus on the positives of their child’s (rens) autism. I have read more websites that are focusing on the needs of Autistic children (still we need more focus on needs and helps for children and parents) and slowly there are some for adults. We still have quite a ways to go for Autistic adults; I am struggling with that myself. I need assistance and help in certain areas of my life, but I cannot get it.

The positive is that I am finding resources for my son.

I am thankful for the virtual school because they have made it possible for him to have therapies that my husband’s insurance does not cover, and unfortunately, we make too much to qualify for assistance, but not enough to pay for them out of pocket. Therefore, I keep getting creative and try to find ways to get him what he needs. :-) I see both the positive and the negative and I still hold onto hope. Some days not so much, but today I see the light. (It is not blue. A joke, relax!)

I am not sure if my post is expressing what I had hoped it would. 

However, I want this month to be a positive experience this year. I do not want to get to April next year and feel that tinge in my heart and the stone in my gut. I am going to take this month as I do each month and write what I am dealing with, our family adventures, our challenges and our GREAT days, and most of all continue to share my Autistic perspective. I can only hope that my openness and experiences that I share on my blog will move people to be more open to the possibility that no matter where we are at on the spectrum our challenges and needs are valid and need to move from awareness, acceptance, and to more action.

I do not want to be filled with anxiety this whole month. 

I will not argue, or demand that people share my point of view. I will continue to do what I have done all along, share my Autistic life spreading awareness, hoping for acceptance, longing for action, and support those within my community. There are plenty of people who are sharing some great posts this year. I hope people will wander and meander to read the different perspectives with openness and acceptance all around. I will once again share an older post because I still feel the same, pretty much. Bringing Awareness, I Am Turning Blue (Repost)

Happy Autism Awareness/Acceptance (Every) Day! 

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Angel (@MindRetrofit) to “I Wish I didn’t have Asperger’s” #AutismPositivity2012 Flash Blog

The driving force behind this post is here please go have a look at the many voices who shed light on Autism Positivity.

To “I Wish I Didn’t Have Aspergers”

 

My heart calls out to you my friend – I call you friend because I already feel a connection. The search words speak volumes, and had I been diagnosed years ago I may have typed the very same words myself.

Only a few years ago I was praying for my son to be healed from autism. It was a confusing, lonely, and desperate time. The tears well up in my eyes right now because the most painful part was that I had not seen the amazing beauty that was flowing through my child’s eyes. He has taught me much more about life than any philosopher, or religious figure. He played a key role in helping me accept myself.

If it was not for him I may still be condemning myself for not being “normal.” Attacking myself in droves seeking answers to “Just fix my brain!” My son’s autism has brought healing that I am fairly certain would not have happened had our eyes never been opened to autism.

I am not denying the challenges. We have them and they are great. We share in sensory issues, social issues, anxiety issues, and eating issues to mention a few. All of those things can be very difficult and hard to handle on some days, but the positives can outweigh the negatives. My son is gifted with numbers; he has an amazing engineering, and musical mind. He sees things with a unique and intriguing perspective. He loves intensely – not necessarily people. :-) He has passion and is hilariously witty!

When I think of you “I Wish I Didn’t Have Aspergers” I wonder about your talents. I would love to hear about your special interests and see where they could take you. My own special interests connect to many things. I love and have a great respect for words. I see connections through science and spirituality flowing into colors and numbers, creating poetry and songs. I hear the silence of the moon that reaches down to all of us who look upon it and share in its loveliness.

I say to you that you are not alone! We share in connection with the sky. If you feel alone, seek out those of us who share in your interests. Seek out those who share the reality of our pains from past and present. Seek out those who are older and have wisdom. Seek out those who are younger and can challenge you. Do not seek to wish that you would no longer be who you are.

There are days when it can seem bleak regarding autism. It feels like no one understands. That is not true. Many of us are sharing our voices and we are sharing them for ourselves, for parents and caregivers who do not know where to turn, and for people like you. We know the feeling even if some of us have never wished our Asperger’s to go, we empathize with the struggle to live in this world surrounded while drenched in loneliness and misunderstandings. We may not have wished it away because we didn’t know what it was, but possibly we did wish to fit in and to be/feel “normal.”

Personally, discovering a name for why I feel and do the things I do has been a relief, and a blessing. The way I think gives me great insight to my children. Each day I accept more and more of myself the good and the bad – with the knowledge of my challenges I am able to move forward. With the allowance of seeking my special interests I am healing from past hurts, and the all too confusing life ride that I have been on.

The future looks bright – I believe that one-day autism will be fully accepted and acknowledged into our culture. I do not know when, but the more we know the brighter it looks. The more we understand the more we can develop resources and attitudes to help each other. Also, leading into better helps for those who have different kinds of challenges in the autism community.

The more of us who utilize the resources available and change our minds to accept ourselves the greater the chances are.  I confess I have my days when I cry and wish that my brain would just stop what it is doing, but I then go and read my friends blogs who understand my pain. I read the resources that explain my brain. I write poetry or stories to spill out emotions I do not understand. It brings healing, and it reminds me that I am not alone.

I look at my son and remember not long ago he couldn’t have a conversation with his brother and sister. He now plays with them on a daily basis. He is telling jokes. It wasn’t even crossing my mind that he would tell jokes two years ago. There is hope. Many of us share in similar pains – there are ways to find help in times of desperation. If I were to be able to speak to you directly, I would say:

“You are unique and have so much to contribute through your Asperger’s mind. You have something special that needs to be shared with the world. You matter and are who you are supposed to be. Find people to help you see that, and build you up in it. You do not need many encourages, only ‘real’ ones. Find a place that accepts you and where you can learn how to gain self-awareness and self-acceptance. Do not deny who you are – embrace it. Once you embrace your challenges and your gifts your life will change. You can do it. You are not alone. You are fully capable. Look in the places of hope, not the places of doubt or self-denial. Your voice matters too. Share it! And when the down times come do not fall for the voices that tell you that none of this is true. Go after the autism acceptance community with a vengeance and determination to remember who you are. We will all be here waiting to share and embrace you! Happiness is the understanding that you are not a disease, or defective – you are a remarkable individual who can achieve great things with the right tools, resources, and encouragement. Search upon those things.”

 Autism Positivity

Our positive outlook begins inward. A good thing about our autism is that in our weaknesses we see with much more clarity just how awesome our strengths are. What may be construed as a weakness can be manifested into great strengths. They may hurt deeply, feel overwhelming, cause us to be immobile at times, but if we look at them as a way to grow and challenge ourselves, I think we can find the positives.

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