Category Archives: Personal Rants

I Love My Birthday … Well, I Used To Much More

Today is my birthday! I am 41 years-old and I love getting older. After a life of confusion, frustration, so many traumatic experiences … etc. and so forth to be able to celebrate the day of my birth and finally, understand why I am the way I am as well as be able to accept me is a great thing to celebrate. (Long sentence, huh?) I wrote a post in 2011 giving the reasons why my birthday means so much to me you can read it here What’s In A Birthday? It is not frivolous nor does it have anything to do with being a “diva” for the day. I am genuinely thankful to have a birthday because I was a child who was almost aborted. I share some of the story in that post above. However, I will not discuss abortion views or opinions so please do not comment on that.

I cannot say exactly why I am here or why it had to take this long to actually feel like I have value enough to share air with the rest of world, but I am here.

Prism ~ Artist Helene Kippert

Prism ~ Artist Helene Kippert

I am here, and I have been thinking a lot about how long I have kept quiet and even discovered that I have been overcome with shame about who I am. I love my birthday, I enjoy the day and I am not going to lie I love presents. I don’t care what they are I just enjoy getting them and unwrapping them. However, for the past few years a steading foreboding has begun to shadow my joyous day and it is Autism Awareness month.

March and April used to be two of my favorite months, they are being swallowed with the approach of fundraising and constant “panic” about Autism.

Not only does it stir up some intense emotions about autism and how it is viewed in our society, but it stirs dread. It creates a battle within myself of feeling happiness for my newfound acceptance and understanding for myself and it unravels my triggers of being misunderstood and condemned for being different. The added components of my own children being misunderstood, spoken of as a “tragedy and a burden” layers on new emotions that make me so sad and sometimes defeated. I am determined though, to not allow this to overcome me.

Today is my birthday and I will enjoy it!

In a couple of days Autism Awareness Month will be here, that is the last time I call it that because it should be Autism Acceptance a call to action for the world to learn, understand, accept, and move forward in educating everyone on how to help Autistics and their families. I plan on writing the month of April on several topics in regards to Autism Awareness month. I am not exactly sure what I will share, but I do plan on taking the month back and focusing on staying positive and not allowing ignorance, campaigns for organizations to get more money, or the lack of true action and help for Autistic families. I plan to look at what I read and see with positive and hopeful eyes. We’ll see how it goes. :-) I said, this on facebook the other day “I think I may turn it on “rainbow” or light it up “kaleidoscopic” for the month of April.”

Maybe if many people looked at Autism through a prism instead of blue they would see a lot more positive too. 

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The World We Live In …

Sometimes I get lost in our world. I admit, I begin to forget that many people do not have a positive outlook about Autism. I forget that they are hurting so much for their child or themselves as an adult Autistic that they say negative things or speak openly about how much they hate it. I forget that people do not understand and many do not want to understand the point of view from those of us who fully accept that Autism is hard, painful, and downright exhausting a lot of the time – even stirring up emotions of hopelessness, but we choose to be proactive. We choose to seek the positives and pull from our strengths and the strengths from our children. (Those of us who are parents.) I forget that some parents cannot see any strengths. I forget that they too are blinded and exhausted because they are living in their world secluded from adult Autistics like myself or children like my kids.

I forget how easy it is for people to generalize and stereotype all of us into one single voice.

I forget that all of us are capable of generalizing, leading into dehumanizing, ultimately manifesting minds that have created demons out of those who we have never encountered in real life. I see the words of those who “hate” Autism and I hurt. It riles up fear for my kids, it ripples anger at generalizations and the lack of effort people put to truly find out what they hate on, it makes me want to shutdown and never share any part of our life because it seems pointless. However, I refuse to react out of heated and unbalanced emotions. I refuse to turn this into anger against those who have hurt me. At this moment, I am taking the time to think about those of you who hate, who are angered, and who want to be heard for your opinions – I am validating you.

I am thinking of you and your world.

I am dismantling my urge to make you a blur in the face of millions and I acknowledge your pain. I stand here breaking the rules that have been laid upon me about being Autistic. I am empathizing with you. I cannot fully understand your position, situation, the deep-rooted causes for your lashing out, but I can understand you needing something to be angry at – I can understand needing something to hate because you do not want to have those feelings directed at your child. I understand that you love your child and you had expectations that have been destroyed. I understand not having resources, financial burdens, not knowing how to help your child, or worrying about their future – the reality for us is that Daniel may be living with us until we are gone. What do we do if something happens to us or when we are gone?

We have considered this and have come up with options – it is still a concern.

But I know your situation is different than mine. I do not live with you everyday. I do not know what is making your life such a challenge that you need to write such things. I do not know who you are or who you are surrounded by. I do not have a relationship with you nor do you have one with me and that makes it easy to make each other blurs. All I have is a glimpse into your life that you share online – I do not know if you actually behave or respond like this in front of others in your real life or if you simply need a place to vent your pains. I do not know, but what I do know is that you are out there and “you” represents one of the masses. I know that there are many of you out there who do not understand what it is like to be told how wrong, invaluable, and incapable of understanding Autism you are – wait, I take that back. Yes, yes you do know. You have been told that and the reason is because you have told many of us who are Autistic that we cannot understand.

The emotions rise, the injustice flails, the banners are raised, and anger is spewed all over the place with no resolution.

There are no empathetic discussions. We are silenced and you are silenced. We brew in anger because we have been bullied, and shutdown our entire life. Now that we can speak, the group keeps telling us to stop being social deviants. Yet, it happens to you too. We are shifting the social norms and when you get out of line with that the pecking starts. We defend ourselves and you defend yourselves and in the mean time our children are the victims. Our cause and fight for justice gets forgotten and lost in the vortex of emotions. It gets sucked into personal attacks and even more hatred on each side. Autism is not either -or, nor black-or-white. It is vast, unique to each situation and each situation carries it owns co-morbid challenges as well.

This morning I woke up feeling a great deal of anger and pain.

I have been struggling with all of the dissension that has been brewing in our community and many others that I share interests in. I cannot quite understand why there seems to be so much rage filtering through the internet, from Biggest Loser, the creationists vs. evolutionists, the church vs. the unchurched, even specialized diets and exercise groups are battling head to head over right and wrong, yes or no, with us or against us. It is not helping. However, this is the world we live in. We have not changed as humans – we are still playing the same social games and are still locked up in our own circle of yes men and no men without coming to the table with open-minds and empathetic hearts. So today, I sat my kids down to see what their feelings were because all of this is going to affect them. We are handing them this world and they need to be realistic about it. I decided to ask them how they would feel if they encountered people who felt this way.

Here was our conversation.

Me: Hey, guys I have something to ask you.

All: What is it mom?

Me: Well, I would like to know how this makes you feel when I share it with you so please, think about it and let me know. Some people think autism sucks, they hate it and they wished that it would go away.

(Audible gasp from Ariel and Joshua.)

Both: What? Why?

Joshua: No, no autism is great.

Me: Ok, can you tell me how you feel when you hear those words?

Joshua: I feel angry and I feel sad.

Me: Me too, buddy that is what I feel, but I am not sure I can exactly explain why.

Ariel: I feel upset, but I cannot explain why.

Daniel: What did you say? (Jumping on the couch and giggling)

Me: Daniel, some people feel that autism sucks and they do not like it.

Daniel: What does autism sucks mean?

Me: 
It means that they feel that it is a bad thing and they wished that there was no autism.

Daniel: I like autism.

Me: How did those words make you feel?

Daniel: 
(still jumping on the couch giggling) It makes me feel upset, I think.

Me: How would you feel if someone said that to you?

Daniel: I would say I do not like that. Why do they hate autism?

Me: Autism is different for every person. For some people it can be really hard for them and/or their children. Remember when you had rough days for weeks and weeks and could not tell us what was wrong? That was hard and you told me it was scary too. Think about your rough days now, do you ever wish you did not have them?

Daniel: 
Yes. I do not like them.

Me: For some people it is like that all the time and for all kinds of reasons they hate it. Do you think that when someone says they hate autism that they hate you?

Daniel: Yes, I think so.

Joshua:
 Yes!

Ariel: Yes.

Me: Why do you guys think that?

Joshua:
 It hurts our feelings.

Daniel: Because I am autism.

Ariel: I do not know why, I just feel that way.

After our conversation, I went on to explain to the kids that many people who say they hate autism are referring to the responses (behaviors) or the pain/suffering they feel or see their child/adult Autistic are going through.

I want them to understand how others feel and why they may treat them in certain ways. In our world, I cannot forget that it is full of different pains, heartache, circumstances, life experiences that cause us to have intense emotional responses. In the world we live in it happens to be very Westernized which, can be extremely polarizing – I am grateful for living in our country, but we are easily swayed by fear, conspiracy, marketing, and have a propensity to stay within our cliques. As humans, we have a tendency to cling to what we know and fear what we do not understand. As a society we have proven that we can make enormous changes for the better when a group stands up against injustice, we can make life for those suffering a better place when our focus is not on the blurs of the millions and our energies are spent on grabbing hold of those faces with tears saying, you matter, now let’s go turn our anger and hatred into something proactive and beneficial for all.

I will not groom my children to hate autism.

Even if we do not say the negative things in front of our kids, they feel it. Many of us who are Autistic are heightened to the feelings of others, but there are some like myself who cannot articulate what the emotions are – I simply feel negative or positive and learned growing up to automatically assume that negative emotions were caused by me and my nonconforming, different behaviors/responses. I will explain to my kids what their challenges are and seek ways to utilize their incredible minds in whatever capacity possible. I was not sure how much Daniel understood throughout most of his young life, I always believed that he understood and I tried my best to be positive. I will not sit here and say that this is an easy task, some days it is not. I have my own struggles.

I chose to seek out what I can do and what I can change to have a better quality of life.

If my kids struggle with emotions of hating autism when they are older, we will talk about it openly and they will have my full support. I will do what needs to be done to help them. It may require things that I would not want to do personally, but we will try. (Because they are not me.) However, the things that I hated had to do mostly with not understanding my differences. I hated and still struggle with my generalized anxiety, depression, PTSD, sensory sensitivities, executive dysfunction, but my Autistic mind gave me the drive and the passion to figure out what was going on in my mind. So do I hate Autism? No. Have I hated feeling isolated and alone? Yes. Have I been in great turmoil and pain because of social confusion? Yes. The main issue being that I was trying so hard to be someone I could never be. I hated that I could not live up to social expectations and stereotypes that caused me to hate being me.

So when I see people have such negative reactions it transports me back to those feelings of self-denial and self-hatred.

I am not saying that they are to blame, but that these are my triggers. I get where they are coming from, but I wish they would take a moment to realize that autism is not something separate from me or my kids. We cannot make it disappear. We are who we are and I have fought too hard through abuse, bullies, stereotypes, generalizations, and coming to terms with self-acceptance that to feel that trigger overcome me is upsetting. It angers me and breaks my heart. I wish that those who feel this way would stop for a moment and realize that their generalized statements are blurring ALL of our faces who are Autistic. You are forming us into a straw man. You are demonizing our attributes. We are not a disease, we are people. We are not invisible and those of us who can speak will.

Those of us who have no words can share insights and perspectives through writing devices, art, music, poetry; we can share some knowledge about autism.

Are we experts on your kids or your situation? Absolutely not, BUT some of us are willing to hear you and try to understand. I cannot speak for the whole community, but I would venture to say that MANY of us would be willing even to the point of letting go of past pains and destructive words just to be able to come to the table of discussion with open minds and empathetic hearts. This CAN be the world we live in. It is the world I am creating for my kids. How many are willing to do this for the sake of our kids and for the sake of adult Autistics who need to be seen, heard, and valued? Sigh … We need your support and many of us are willing to offer ours to you and do offer it through our writings. We are able to give you insights and understanding to a world that is different from yours. We have tried to understand your world – we have lived in it every day and we emphatically try daily. Is there a way to bridge this gap? That is not a rhetorical question.

Can anyone find a way to make this work? I seek hope … but I am also, realistic and understand human nature. 

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It’s About Trust

This blog, for the most part has been about my journey. My kids are part of that and I have written about our life. I write because it helps me, I had various reasons for why I started a blog one being to keep record of our lives. It was confusing for me as a child to try to make sense of what was going on with my parents. I wish I had a record of what my parents were going through as I was growing up – it would have cleared up a lot of confusion, hurt, and emotions that I did not need to carry. I am not sure if this will help my kids or if they will ever want to read it, but it is here for the time being. There were other reasons – several – I wanted to find others because I was so alone, I wanted to know that I was not the only one. I had hoped that my life and the things that I have gone through had some purpose in this life I felt that by sharing it could be helpful, so I shared and I keep on sharing…

Over the summer leading into recent days, my thoughts continued to wander and ponder about the things that I shared on this blog.

I am not referring to what I write about myself so much, but I am referring to what I share about my kids. I know that I tried to be considerate of what I tell people on here and in our home life. I believe that I have done fairly well at not over-sharing about them (for the most part.) although; in the beginning years I may have shared things that I would not feel comfortable with now. I really cannot recall at the moment, but I do know that I have always had the attitude that if it could feel embarrassing to my kids or even humiliating – whether they could understand or not – I did and have not shared it. I write about them and I have posted pictures because I am extremely proud of my kids.

I think they are the tops!

I know, most parents feel that way and many times that is why we share. Not to brag, but to talk about their great deeds and wonderiffic personalities. Or to let others know about their progress and to give hope. However, over the course of time there were several posts that I read from blogs, Huffington Post, and facebook etc …  They were from various perspectives from parents and Autistics alike in regards to what parents share about their Autistic children. It really got me thinking about what I have shared and it has helped me to remember boundaries when I do share. There have been several posts that I have written where I asked Ariel and Joshua specifically if they were ok with what I wrote and they were even excited that I had shared about them. I tried to ask Daniel, but he did not really understand. However, I have tried to be cautious about what I share and when I do say something such as “he is having a rough time” I do not share the details. I do not see how that benefits anyone.

I have had times when things were too much for me, I still do.

If I feel frustrated or overwhelmed I ask for help such as requesting that David just let me tell him what has been going on without any “fix” lingo, believe me before I share anything with anyone I have exhausted all of my efforts – I just need to know someone understands. I will post something that requests prayers, happy thoughts, and positive vibes because it helps me to know that people are there – I am not alone and I can redirect. It may not work for others I understand that. I may have shared in the past, responses or experiences that no longer happen, but if I did it was out of an emotional state of exhaustion, anxiety, and feeling helpless or in hopes of helping people understand. Though that is no excuse – I am not perfect. After reading Social Media and Dignity- When does sharing go too far? (I recommend reading it, it’s a great post.) I was flooded with thoughts. I spent the day, looking at my kids and wondering how they truly felt about my blog and the things that I have shared publicly.

I was transported to the times when I had people share stories or things about me and the emotions came over me.

Some were of embarrassment, some made me feel proud, others made me feel shameful, or ignorant. As I went through those moments, I also thought of the intentions of those people. It was clear those who were doing it out of motives that were filled with love or endearment and those that were purposefully trying to make me feel badly about myself. Worse yet, they were doing it to make people feel sorry for them because I was such a handful and uncontrollable child. My kids know that I love them dearly – they trust me. THEY TRUST ME! That thought right there fills me with an intense sense of responsibility. I have been given this gift of trust from my children and it will be me (and David) who will help influence how they understand what trust is and what it should look like. I have made mistakes and I will continue to do so, but I am honest with my kids about that.

When I make a mistake I tell them and I apologize – we learn from it and we move on.

I ask them to do the same as well, so you made a mistake now you know, it’s in the past. We learned something and we move on. Yet, that overwhelming sense of responsibility hit me like a ton of bricks the other day. I decided to ask the kids their thoughts about my blog and the things I share. Ariel was quite easy. I asked her if she felt alright with the fact that I write about her and share things about her on my blog, her exact words, “Yeah, I don’t care.” I was not sure if she truly understood so I asked do you mind that I have shared things about your responses when you get overwhelmed or upset, like when you shutdown? She said in her matter-of-fact tone while darting her eyes at me, “No, I do not care.” I asked Joshua the same thing and he thought for a moment then said, “I am ok with what you write.” I had read several posts to him that I had written that involved him before I posted them in the past, but I wanted to be sure he was truly alright with it.

I asked him too if he was ok with me sharing some of his responses such as having extremes with emotions or sensory overload.

He said he was fine with that and Ariel chimed in saying, “Mom we don’t care, we trust you.” I later asked Daniel the same types of question only explaining it with more detail. Daniel said, “Yes, I think I am ok with that.” I went into further explanations of what I share and what I do not share. I gave him a specific example that I will not post and he asked, “Should I not be ok with that? Is it only me?” I told him that he was not the only one and that he should not feel embarrassed or uncomfortable about it, but it is probably something that we should not share publicly, only with family members who know us and understand. He said, “Oh, yes. I am ok with that, but I do not think I am ok with it on your blog.”  It opened up communication that we have not had before. I am not sure how much he understands about a blog and the internet, but he does understand sharing with others who are in our life.

I broke several things down into specifics.

Daniel was able to share with me the things that he was not sure about, things that he was ok, with, and the things that he never wanted me to share. He used examples of past reactions and responses and told me that he did not like it when people knew about it. He expressed to me (though he could find the exact words) that he did not like it when people saw him or knew when he was upset. I asked him if there was any specific reason and he simply said, “Um, no I just don’t like it.” (I do not like it either!) YAY!!! It was incredible. Granted you are only getting a snippet of my conversations with the kids, but I think you get the gist of it. It was relieving too because as far I as I can recall I have not shared anything that would make him or Ariel and Joshua feel uncomfortable based on what all of them expressed to me.

It was a moving day for me in many ways.

I think something that really made an impact on me was how much my kids do not feel shame. There are many things that each of them have done and continue to do directly related to Autism traits, sensory issues, or learning challenges that I too did/do and was made to feel shameful, embarrassed, or wrong for while growing up; as I spoke with my kids they reflected an attitude of self-acceptance and a clear understanding that their difficulties and responses are due to circumstances, how their mind’s process, and their unique perspective/perceptions of the world and situations. They have not taken on the inaccurate feelings that there is something wrong with them or that they should feel badly about themselves. I have a new understanding, however; of the responsibility of my children’s trust.

I do not want to lose that trust and I will make new efforts to try to ensure that I do not.

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Update Regarding “An Email To The New SLP”

I wanted to give an update about my interactions with Daniel’s SLP. You can read about that here An Email To The New SLP. I waited “patiently” to hear from her, while waiting for her response I received an email from Daniel’s new OT who suggested almost verbatim what the SLP had to me. She wanted to change his routine AND use the reward system. I nearly lost it. I took a deep breath and calmly emailed her practically the same email only explaining to her what had happened that morning before their session. Prior to their session Daniel had set his owl timer — it is a cooking timer that is extremely loud it scares him and everyone else in the house, but he will not part with it — He had forgotten that he set it the timer went off and terrified him. We spent time recovering from the loud, blood curdling sound for about 20 min. before the session, but it was too much for him.

She was new, and she was asking him to do things he had never done before.

Needless to say, he was not as cooperative in session as he had been last week. Keep in mind last week was a “get to know you” session. I was so upset that both of these women expected Daniel to come to sessions doing new things, with a new person, at new times, when we just got back from winter break, without any issues. He needs to be transitioned and not punished for not knowing what, how, or why he is supposed to do things. It sent me into a spiral of frustration and tears. I started to get swept away into thinking negative thoughts because I felt as if I was at the mercy of these people. So instead of falling into that trap for long, I decided that I would look into local options.

I am in the works of finding local therapists through our school district.

Daniel is entitled to those services I just have not perused it because of the virtual school and because our move here a year and half ago was too much for him. I needed to get him into a routine and I knew that he would do much better with virtual therapies during that transition. Now he has progressed to a point to where local therapists may be a good option. The best news out of all of this is that it reminded me to contact the music therapy facilities in town and see what our options were for that. I was so excited to discover that we had been approved for the sliding scale payments. Our insurance does not cover it and the waiting list for a SS waiver is several years behind – I do not think they will get to him until he is in his teens. It still costs a bit much for our budget, I am not sure how we are going to do it each week, but we will find a way.

He starts next week and we are very happy about that!

Back to the SLP and OT situation – the OT contacted me right away and thanked me for all of my insights about Daniel. She said that she would keep the routine and do anything she could to help him transition. She was very kind and thought it was wonderful that I offered to give her a “heads up” email before sessions if something triggered him or if he is having a rough time. She was very positive and willing. I felt pleased about that interaction. The SLP contacted me several days later and thanked me for the insights and agreed to keep his routines and methods as his last SLP while he transitions. I do not know if her methods are going to work for Daniel, but for now he has his routines and I am good with that.

The OT is not trying to make Daniel transition into how she wants to do things, she is flowing with him. 

The SLP plans to transition him into the way that she does things. I know it is good for him to be exposed to different personalities and ways of doing things, but I have my reservations because he was progressing so well. I am open to trying, but ensuring he has a few other positive therapy interactions as well. Jumping forward (or back?) in thought … During the summer Daniel went to music therapy social groups, he loved it. He did amazing and I have no doubt that starting him in these one-on-one sessions will help him too. They offer family sessions that incorporate families and kids of all ages for ten weeks. They involve learning about instruments, making music, and socializing. I plan on signing the kids and myself up the next time they offer it. I am jumping in thought again … Although, this whole thing was stressful and I worked myself up a couple of times I have several things that I feel good about.

  1. I did not freak out on either woman. I managed to stay calm and write them without involving my heated emotions.
  2. I was able to communicate clearly and be a voice for Daniel when he needed it. I did not doubt myself or entertain the thoughts that “Maybe I was wrong.” I was not wrong – I did the right thing for him.
  3. This prompted me to realize how dependent I had become on them and their resources. It opened my eyes to step out and look for other options, not only that but it motivated me to get Daniel set up into therapy that I know will benefit him greatly.
  4. I realized that I was able to use my voice, though it made me sick to my stomach and anxious, I was able to stop my looping and obsessive thoughts. I focused on being proactive instead of falling into the feeling that I was stuck and reliant solely on them.
  5. Daniel is happy and I was able to explain new changes and prepare him before his session on Thursday so he could feel prepared and at ease.

Daniel did amazing in speech session on Thursday.

She did not respond to me until Friday, but because I had already dealt with my own issues I prepared him for her way of doing things and gave him a time limit that allowed him to know the transition from show-n-tell to doing his work. It made a world of difference. He just needs to know time frames and what is expected of him and if he gets to make that initial connection with a person he does so well. I cannot wait for next week’s music therapy session. The therapist seems like a very good fit for Daniel and me. (Wink, wink) He is ecstatic and has been talking about it for days. That’s all of the update, I suppose. It seemed to look a bit negative, but out of it some great things manifested. I am looking forward to see what the school districts offers here there may be many other options available that I did not know about. Sometimes uncertainty is good, right??

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An Email To The New SLP

Right after Thanksgiving break we were taken aback with the sudden loss of Daniel’s SLP. (Speech-language pathologist) I received an email the morning that they were to return simply stating that she would no longer be at the virtual school and would no longer be Daniel’s SLP. This was a shock because she was so excited to return and continue to work with Daniel. The last day was an incredible speech session. Daniel has progressed so much working with her. There was nothing I could do it was over and we were at the mercy of the school and the therapists that they use. It took about two weeks to get him set up with his new SLP. I had my concerns about her, but have been trying to be open-minded. They only met a couple of times. I found it odd that she did not ask me anything about Daniel prior to meeting with him or afterwards.

She just went right to it doing whatever she does with all of her kids.

I am not sure if she has worked with a child like Daniel. He is a mix of the spectrum that quite frankly, I have not read many other people speak of. It is difficult for me to put into words, but Daniel is basically bouncing all over the Autism spectrum. That is the best I can do. He does not have fixations the same way that others do. He does not stay interested in things obsessively for long, just like his sensory challenges changing on a daily basis, so can his interests. He has some that stick with him, but he does not consume them the way that Joshua or Ariel do. It is hard to explain, but that is just another reason why rewards or withholding does not work. Not that I use that method, but I do know that the school and therapists have attempted to do that with him and it failed.

Daniel is about relationship.

When Daniel was completely nonverbal, I found the only way to get him to communicate was to be actively involved in what he was doing. Active took on a different action some days. One day it would be me sitting in the same room with him. Other days it was with me next to him. Then, there would be days when I did what he was doing I paid attention to how he responded and I did not push. He was responsive to this and our relationship started to develop to the point that I could figure out what he wanted more so than not. There was and still is the “not” days. That is ok, I have my “not” days. For instance, today I have no words or idea to how I feel. I know that I need something, but I am not sure what it is … I have to wait for my brain to catch up to my emotions.

However, I knew what I felt when interacting with Daniel’s new SLP today.

She was misreading him and trying to pressure me to do what she wanted. I would not budge. My priority is Daniel and his needs. It is much easier for her to bend to how she does things and work with him in a positive way to help him transition. It is much more challenging and it induces unnecessary anxiety in him to force changes. He has been on school break for two weeks, coming back to mid-year testing that gives no indication of how many questions are on the test because they are on the computer. I normally print out tests for him because it is much easier for him to process I cannot do that with these tests and I cannot tell him when they will end. Anxiety much? Visual processing overload much? On the first day back, he had to meet a new OT and was unable to say good-bye to the one that he had for over a year. He bonded to her and his other SLP.

He is sad.

He is grieving though no one seems to consider that. He does not know that he is grieving, he is just upset and does not understand why or how to process it. The last OT wanted very much to meet and do a good-bye session, but her schedule would not allow. I know that they have jobs to do and their schedules are full, but I really wish that people would understand how difficult this can be for children – not only special needs children, but all children. They bond with their therapists and teachers, even I had made certain connections to teachers and many of them I did not care for one iota. :-) It was hard for me to transition to each new grade and meet new teachers and kids. It was sad for me to lose a teacher that I was fond of and I would grieve the loss. I would also, feel the anxiety and fear of not knowing my new ones and then, trying to establish some sort of relationship with them.

Child hood is not easy; I know that many kids can bounce back from leaving or getting a different teacher.

For us, it is harder especially if we have made a connection and developed a positive relationship. I decided to write the SLP an email giving some insights about Daniel in hopes of improving the transition and to let her know I am willing to help in any way to make this a positive experience for Daniel. I am sharing here as well in hopes that maybe it will help others who have not seen it from this perspective. I am not angry with her I am just frustrated at the situation and feel unheard. I do not think the SLP is wrong, I think she has her methods and possibly they work for other kids, but I know that they will not work for mine. My intention is try to help her and Daniel be successful in their sessions and for him to continue to progress as he has been. I really hope it manifests into a positive interaction and opens up communication and understanding.

Here is the email. 

Hello,

I thought it would be a good idea to share with you some things that may help with sessions. Daniel does not respond as some children do with a reward system. It does not work with him. It can work for a period of time, but it will not last. He does much better with connection than, with reward or withholding. He does not respond to reward he responds to connection. He may actually regress or not be as responsive through those methods.

For him, the show-n-tell is about connecting to you so he can work better with you. He feels that sharing something that he is interested in or cares about and you doing the same with him is building trust and comfortably. It lessons his anxiety and calms his mind in order to work with you. He does not respond to withholding. It confuses him and he does not understand the purpose. It spirals him into confusion leads to anxiety setting his mind into a state of “fight or flight” and unable to focus.

Daniel is very willing to work many days, but with all of these new transitions which are emotional and difficult even for a child who is not on the Autism spectrum, it will take some time for him to ease into it. I will do my part with helping him transition into the way that you prefer your sessions to be, but I will need time and I would like it to be as positive an experience as possible for him.

If you have a suggestion of “connecting” with him in another way before sessions start I would be happy to help the transition from the old routine to yours if you let me know. I can create a social story and help create a new script for him; I have already been working with him about every teacher and therapist being different. The real issue here for Daniel is that he was very much connected with Ms. L and his OT. He has now lost two relationships and people that he bonded with. I know that he is putting forth efforts to try to establish a working relationship with you because if he did not want to he would not respond at all.

Another bit of information that may help is that when Daniel is focused on specific things such as the colors of the checks it is not about that, it normally has to do with confusion – though you have done your sessions a particular way before he has not had enough sessions with you to override the script that he has in his head that Ms. L and I established. He did the same type of routine for over a year that script has been his source of comfort and connection.

He was looping about the confusion of old routine while, trying to redirect himself into a new routine. This caused him to get jumbled in order to try to stop himself from going into a meltdown he fixated. I saw today as a triumph for him despite at the end he was starting to get upset. He achieved a lot on his own; he used his words, and continued to try to communicate with you. That is huge for him. In the past, he would have shutdown completely or gone into a full on meltdown. He was not upset at you he was upset because he felt he tried yet, because he did not get to finish the plan that he had in his mind he was left unfinished, open-ended, any unresolved tasks cause upset.

When Daniel begins to get fixated there are numerous things that can be contributing, he is not being insubordinate. His sensory challenges affect his ability to process and he gets frustrated. This can look as though he is misbehaving or acting out on purpose. He has vision processing challenges reading for him on certain days takes more effort and strain. The weather has changed drastically and he is having problems with sinuses this affects his eyes and his ability to read.

He has auditory processing challenges so when he asks repeatedly what are you saying it is because the words are getting mixed up and confused in his head. He is not hearing them properly. At those times it is best to talk to him slowly or ask him if he understands what you mean. Sometimes it only takes changing a couple of words and he is able to process. With Ms. L they were working on communicating when he was having these challenges instead of assuming that he was being unwilling. The attention was on asking him questions as to why he was having challenges this helped Daniel find words and he was learning to express himself better. I think that may help in the future.

I am willing to give you as much information about him to help the sessions be successful as possible. Please let me know if there is anything I can provide to do that. I am always willing to work with the therapists and follow through. I just need to know what is expected/needed and how we can work together for the same goals.

I hope this gives some helpful information and please let me know what I can do help this transition on my end.

Thank you,
Angel

 

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I Don’t Have A “Bestie”

I will forewarn you this post is a processing post that is filled with a culmination of my lifetime of confusion and hurt about relationships. It was spawned from a web of thoughts connected by my longing for a person that I believed existed. A person that I thought was out there who understood me, who one day I would find and pieces of me would finally make sense. I thought that they would help me understand me because we would “know” one another and just “fit.” I have been pondering these thoughts for months. I have been analyzing, researching, rethinking, and dissecting what unconditional love is supposed to mean. I am sure that this post is going to manifest into several as I make connections, but I am tackling this “bestie” thing today. Bestie or better known as best friend is something that I do not have in my life. If I did I would never call them my bestie unless it was in some sort of mocking way. :-)

I do not usually use words like “bestie” “BFF,” or “fav person.”

The concept of best makes me automatically feel as if there is some sort of completion. This person is better than you no matter what – they are the best. I understand that best applies to their connection and their relationship, but in my experience, a person who tells me this is their best friend is setting a boundary and telling me that no one will ever measure up and no one can contribute anything to the dynamic of the relationship. No matter what, everyone else is out. As far as I know no one considers me their best friend, they may consider me their good friend, but no one has said that I am their “best friend.” I do make a very good friend – I do not know if I could be a best friend. Not in the way that I perceive people being best friends anyway. These thoughts and realizations have become clearer to me in the last few weeks when I have witnessed pictures and all of the verbal and physical affections poured out to others.

It triggered my painful experiences with friendships.

It triggered my confusion about people saying that their best friend is their husband, their mother, their sibling, or someone that they immediately connected with. Why does it feel like everyone around me has that one person? They seem to have that person that they can confide in, share with, have private jokes with, be happy with, but I am the foreigner who cannot? What is so wrong with me that I cannot have that type of connection? Is there anything wrong with me? Do others know what I am talking about and share in this pain as an onlooker of relationship connection? There are some days when these thoughts never cross my mind. I do not think there is anything wrong with me per se. I admit I do tend to have a different perspective about my relationships than the other person. I will think nothing is wrong or that we are still connected until I realize that they have not contacted me in a long time and I see them socializing or interacting with others, but not me.

I can be perfectly content and think that I have some sort friendship and connection.

Then, I realize that what I think the relationship is and what the person thinks about the relationship are two different things. My mind then, goes into a state of confusion, chaos, and anxiety and I frantically try to understand – are we friends or not??? Just tell me! I have a similar problem with family. For instance, I see my aunt every week at the Y. We converse a little here and there on fb. However, I am not included in her life. For me, she is the closest thing I have to a close friend in real life, but I do not get invited to go places with her and I normally only get invited to family events. Yet, it has been made clear that her “door is always open” to come over. I cannot simply decide to go over to someone’s house unexpected and randomly. The thought of an open door policy fills me with anxiety. I want to very much be connected and participate, but I do not know how.

Honestly, there are times that I wonder and try to figure out if she is just saying that to make me feel better or if she means it.

In my mind, I question because I am never invited to do other things with her. We share in the working out interest, but she does not invite me to go workout with her when she invites the other people from the same workout groups. I don’t understand it. I am not saying that she has done anything wrong – I am saying I do not understand why she does not think to ask me or offer to participate. Please keep in mind I am processing and there is a lot of emotion trapped into my words mostly because I am confused by people’s behaviors and my own surprise of feeling so deeply hurt. Why am I hurt? Why are these emotions stirring? I hope writing my thoughts will help me. Maybe I should start from my earliest memory of having someone in my life who I considered a best friend.

 bigstock_Paper_Fortune_Teller_86736345The first person was in kindergarten.

I do not recall much other than; I thought the friendship was much more than what she thought. We were friends. We played on the playground together. We sat next to each other. I remember being confused when she would run off with other friends, but not much else. The only other thing I recall was the day that she upset me so terribly that I punched her in the stomach. It was because she would not give me something when she said that she would.

It was one of those paper “fortune teller” things that kids make.

I had never seen one and found it utterly fascinating. I wanted to see how it worked. How was it folded? How many sides were there? What kind of shapes could I find? What were the answers that were hidden AND how did the answers come about? I was so excited – I wanted to see it so badly. She was playing with it and told me to wait my turn, I did. I was being patient, but she was taking too long. I went to the teacher and told on her. The teacher set a time limit and my friend would not give it to me after the time limit was up. She kept it and taunted me putting it close to me then, taking it away. I told her to stop and told her to give it to me. She wouldn’t. I got mad; I punched her in the stomach, and took it running to the other end of the room.  (When I was a kid I had aggressive behaviors if provoked by these types of things that felt unjust. However, when I was bullied physically or verbally I would shutdown. I do not know why.)

I got in a butt load of trouble and was not allowed to play with it.

We were no longer friends. Then, there was my first grade best friend. She and I were together all the time – I have no recollection as to how we became friends. However, she did a similar thing to me on the playground. She was on one of the spring horse things that bounce back and forth. Short version, she would not share – was a brat about it – I started punching her on the back, pulled her off of it, and got on. I got into a butt load of trouble, again. She also, convinced me to steal stickers from the teacher during lunch one day. She said, “If you are really my best friend you will get me stickers.” We got caught, but I was the one with my hands in the desk – I was also, the one with aggressive behavior, lived in a trailer, and had a single mom. Guess who got the blame? Yeppers, yours truly. She was the person I wrote my first poem about.

My first poem was titled “Best Friend” and posed questions about what is a best friend, why do best friends lie and hurt me?

I believe that may have been when I started to create an ideal best friend in my psyche. I did not have best friends throughout elementary school. I had friends and lost them all. I ended up with two “best friends” in my first year of middle school. It was too difficult of a dynamic for me. They were best friends before me then, they befriended me. However, there is always a dynamic of loyalty to one friend and that dynamic can change when it is one-on-one. It also, changes when it is more than one. Girls have so many underlined thoughts, emotions, nonverbal cues, verbal cues, body language, EEEK! There are so many things that I do not catch – things are so hidden between the lines and I miss them or get extremely confused by them. It proved to be too challenging for me in middle school. I wrote a little about those girls in this post Bullies. I made another best friend the next year, however; there was a similar dynamic.

She already had a best friend who lived across town.

I would get confused and hurt every time she wanted to be with her other friend. They shared secrets, other interests, they seemed so much more connected, and I did not fit. Although, that is the same best friend who screwed my boyfriend a few years later that triggered me to try to commit suicide so … then, there was my last and final best friend so to speak. She was my everything. I adored her while everyone else in my life said that she did not care a lick about me. They said that she was using me and took advantage. I really do not know to be honest my perspective is so skewed because I gave her my whole heart. Another short version of the story, she was the cousin of my first boyfriend who I needed to have out of my life completely. At one point she and I had plans for our future that dismantled because she got pregnant, but she got pregnant with someone who was not her boyfriend at the time.

She had a secret life that I did not know about. 

She had friends that I did not know about, she was not the person I thought she was and I was in shock for a very long time. I was in shock and felt abandoned. She was just as shocked with me when I was upset. She could not understand why I would feel the way I did. I felt as if I had been betrayed, I thought I knew her and I did not know her at all. It was devastating. I think it was at that point I looked to men to be my sole “bestie.” I looked to my boyfriends to provide all of my friendship needs, but it did not work for me because I found it difficult to transition daily from romantic love interest to best friend. I could not tell my boyfriend or spouse EVERYTHING that I was thinking. I know because I HAVE and it is never good. Never! It is never good for me to share everything with a best friend either. This is when I started to have tremendous hurt, confusion, and thoughts of just giving up on relationships altogether.

I could not give up though; I continued to try – seeking that one person who finally understood. 

Part of the challenge for me is that I cannot talk to a person every single day. I cannot drop everything that I am doing and be there. I cannot ignore my own interests on a regular basis and be the all consuming emotional support for people. The only way that I am able to devote any large amount of energy on people like that is if they live with me. That is why I had my friends stay with all the time. That is why I moved in with my boyfriends. I needed to be near them or else I could not keep up. There were too many unknowns and what seemed like randomness. They tried to explain to me that I could not know everything. I did not understand I was trying to ease my anxieties and fears of abandonment. I understand now that a good friend does not expect you to drop everything for them. A good friend understands boundaries and respects them. A good friend does not ignore you until they need another emotional fix. The people I acquired as best friends may have been the one person that I shared myself with, but they were not good for me.

I had several friends that I would consider close friends. 

Several of them shared the similar patterns requesting my time and attention when needed, but they had other friends who fulfilled their other needs – the more fun, entertaining, types of things. I am goof ball and I did share in a lot of fun and silliness, but for them it was not the same. I get serious too quickly. I talk about things that people do not want to think about. My goofiness comes and my oddities make them laugh, but it is not the same. We did not share in the same ways as they shared with other friends. I understand that, but it makes for a lonely feeling at times. I never truly feel alone, alone because I am comfortable with myself. I find pleasure in being silly with myself. I make myself laugh all the time. I find creatures to be quite good friends – though the conversations tend to be a bit one-sided.

Those creatures never stop talking about themselves! Kidding!

My lifetime of making and losing friends has been painful. I have not understood and there are days when I get so upset. I ask David, What is so wrong with me that I cannot have any friends like other people have friends? Why can’t I have a best friend to share with? What is it about me that people only want me around at certain times? Why has this happened throughout my entire life? Why doesn’t anyone in my family want to be my friend? Just because I have these thoughts does not necessarily mean I believe them. David and I are both in agreement that according the societies definition of best friend we do not want to be best friends and we do not think that it is healthy for us. We have been the only people in each other’s life for a very long time and have learned that some things just should not be said to your spouse. We do not hold back anything of importance, but fleeting thoughts or emotional processing should not be spewed all over the place without some sort of limitation.

We both have said things to one another that caused unnecessary hurt because we did not understand filters.    

It is a challenge too since, both of us are very direct at times and can lack couth when communicating. I think all of this is spinning in my head because it is time to deal with these hurts and understand some of the causes of these triggers. I do not even know how to make a best friend – most people have one by my age. These triggers are linked to family dynamics as well. I see my family have these friendships and bonds and it hurts. I try to connect and my attempts feel feeble. It feels like if I am not jumping up and down screaming, Hey, look at me! I am here! Pay attention to me! That I am forgotten. This is not true; it just feels like it sometimes. That invisible feeling can distort so much. The fear of being forgotten can consume me. I am not really sure why it matters. My only resolution to that thought is that I have always had the lingering feeling that I really do not exist and the only way that I know I do is if other people confirm it somehow.

Goodness, I have no idea if I am making any sense here!

I find this all so frustrating that I am still struggling with it and relieving to get more of it out. I am not sure if I have any answers, but at least the heaviness, sadness, pain in my heart has decreased. I do think that I have progressed in realizing the ideology that there is one person who will understand me is just that – ideology. If I were to rely on a single person who got me and I spent all of my time devoted to them when would I be challenged to grow and appreciate the uniqueness in others? I also, think that by getting all of this emotional mess out of my head that I can better discern how to see the relationships I do have in my life and appreciate them more. I need to accept my capabilities, my love/affection language, and see how that fits into the relationships I have. So I suppose, this post does have a good purpose.

Thank you for reading if you made it this far here are several things that I read/am reading. 

I apply things that I read about kids to myself too, I wish people would write things about adult Autistics or am I the only one who struggles with the stuff??? 

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Grieving Cultural “Norms”- Releasing Idealistic Expectations

There is really so much that is packed into this topic – I cannot touch base on all that I would like to, I will expand on some of these thoughts in the next few posts I share … I did not understand grief until a few years ago, I was perplexed when parents said that they grieved over their child’s autism diagnosis. Out of my confusion, I went in research mode to try to understand grief and understand why these parents felt this way. Grief is predominantly defined as the loss of a loved one or you can also, feel grief with having an illness with no cure. When I understood that, I was able to see the paradigm these parents had about autism (even still today) being an incurable disease. I understood their emotions much more, however; I did not feel the same way. It’s not a disease.

I personally, gained much more understanding when I read this, “Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, spiritual, and philosophical dimensions.” Wiki 

Throughout my life, I did not allow myself to grieve more accurately; I did not understand how to grieve. I do not have the same response to death and loss as others seem to have; my grieving process is different in many ways when it comes to the loss of someone or a pet(s) that I loved. I do not want to dismiss anyone’s emotions or condemn them for what they (feel) felt, however; I encourage people to read A Parent’s Guide to Responding to a Child’s Autism Diagnosis as a more positive approach. Words like “coping” and “grieving” fed into my fears. I chose to reject such social norms of negative thinking, but that came through a process. It was not instantaneous. How could I instantly be accepting of something that I did not understand? Not only that I had to filter through a lot of negative muddled perspectives in order to come to my own conclusions.

I grieved over our world and my naivety of human behaviors, though I did not know that I was mourning and grieving.

As I researched and mulled over all that I was reading, I discovered for myself that I go through a grieving process anytime I feel a sense of loss for anything. If I feel that I have lost a friend in real life this feels like death to me. Even the slightest things like losing a “like” from my fb page or giving away a book have caused my heart to feel pain and loss. I am not sure why some things feel so intensely like that, while other things have no sense of loss at all for me. I have no answers for that, but I do know that through the years I have felt much loss and severe heartache with what I now realize were expectations. These expectations were my own or what others had created. I did not feel that I was losing anything when Daniel was diagnosed – I felt that I was gaining answers. However, when I received the reactions and in some cases lack of reaction when sharing he was Autistic, I felt that somehow I was wrong for not feeling grief.

I felt that I should feel ashamed.

Even this past Monday, when I openly shared on my personal fb about the “This is Autism” flashblog, not one family member responded – I felt that sense of, you should be ashamed! When I was told that Daniel was not how “God intended him to be” and that “You should not accept labels they are limiting”, I felt that somehow my expectations were wrong. I took on their expectations and twisted them with mine. Those expectations had become part of my identity, much like when I read a book and can take on the personalities and emotions of the characters while in that world. The world I had created to escape my pains of this world had become an idealized me and an idealized life – I had written a novel in my head thinking that it was real, but did not realize I had written it from so many other people’s idealistic expectations.

That may only make sense to me. :-)

I still struggled and fought against certain expectations, but I found it difficult to feel that I was doing the right thing for Daniel when others seemed so hell-bent on expressing how he needed to be “fixed.” The “social norm” was to grieve over my son then, I was supposed to take on some sort of attitude. Either I become a “Warrior Mom,” “Special Needs Mom,” “Geek Mom,” “Autism Mom,” “Superhero Mom,” or any of the other gazillion mom titles that were out there. I am not knocking mom titles; I am knocking how society demands that we be part of a group. I am a mom who does the best that I can and I try to be better every day. (Period) I grieved not belonging to any of those groups. Interestingly, I had prided myself throughout my life for not wanting what everyone else wanted.

It was one of those love-hate types of relationships.

I wanted to fit in, but I also, enjoyed the fact that I didn’t – not sure how to explain that one. When autism became part of our life I was faced with the fact that I did have many expectations that many other parents/people had. In a strange way, I thought that once I had children it would help me become more socially “normal”. I thought that my kids would be actively involved in church. I thought that they would make lifelong friends and we would be participants in activities with other parents and their children. I thought that they would have the childhood that I always fantasized about when I was a child. I did not realize just how much I actually DID feel so “different” and longed for “normalcy” while growing up until I had my own children.

When the twins were born it was much more isolating than I had imagined. 

Nineteen months later, when Joshua was born I had no contact with anyone other David and few interactions with some of his co-workers. A few times his mom, or other family members came over, but my anxieties would get the best of me causing severe panic attacks and insomnia days before or days later. I blamed myself as I did throughout my life. When we moved to where my mom lives, I thought it would be much better. We could have a church home and I had my mom. These anchors would help me be more social – I had scripts. It did not play out the way I had imagined either. We did not fit into the church group; David had many reservations about the church and the people. (He was right.)

Despite those issues, I realized that I wanted to have what other people had. 

Well, I thought I did. The reality of it was that I wanted many of the same things because that is what our society said we were supposed to do. I thought that their way must be right because through my lifetime, all that I represented was wrong – it represented different, isolated, being strange, odd, left out … I expected to have a certain type of marriage, however; I could not live up to the expectations. None of those expectations were ever voiced to me by David, they were presumed by me. Those presumptions were ingrained in my head through what little knowledge I had about marriage – all I knew was that I could not get another divorce and the church made it very clear what my “duty” was as a wife. (Long story, not going there.) I expected to have a certain type of family this too was influenced by what little knowledge I had about family and the fantasies I had created in my head while I played alone as a child.

They were fantasies heavily influenced by TV, later church, and the “appearances” of other families I encountered. 

My family is a flux of complexities. I wanted to have what everyone else seemed to have – happy, loving, perfect homes and lives. I allowed myself to grieve expectations that were actually nothing more than, fantasies derived from a childhood of confusion, the desire to be noticed, loved, validated, and the longing to know what it meant to be a “normal” family. I released the frustrations and the feelings that I had failed because my child was not out of diapers at a certain age, was still sucking on a bottle at the age of five, did not feed himself until he was almost four-years old and still needed me to feed him for quite some time after – I still cut up every piece of food and help him to go to the bathroom. AND that is ok; it has nothing to do with my parenting skills. It’s what he needs – every child deserves to get their needs met, and should be accepted without comparisons to any other child.

I do not share fully what our life is like or how it has been because I feel no need to do so unless it will help people.

I had to grieve my faulty ideals in order to see who I was truly as a parent and who my children were; I could not see Daniel for a short time after his diagnosis. I only saw autism, which at the time was a huge, big, and frightening unknown that I could not grasp. I could only see the negative expectations that the world was filling my head with and I was blinded to what my child truly needed. When I realized that I was fulfilling the world’s expectations in regards to my son and myself, I went down a challenging road of dismantling those expectations and ripping off blinders to see my reality and my truth. I have gone through many grieving processes throughout this journey. Our autism journey has unleashed many unexpected healing journeys for me. There is no shame in grieving, but out of grieving should come change. I grieved my lack of ability to help Daniel – I took that grief and motivated myself to learn how to help or find help.

I took my grief from my idealistic views and motivated myself to discover and distinguish our unique family.

I grieved the expectations of how people and family would support me and cultivated my own support – in the ways that I need it. I grieved the wife and mother I had imagined I was supposed to be throughout my life. I am not going to share all of the grieving I have done, but I will share lastly that most of this grieving about being a certain type of wife, mother, sister, daughter, friend, etc … was me grieving the neurotypical self I had tried so desperately to be – not because I wanted to be her, but I grieved all those days that were wasted on trying so hard and feeling like a failure … I grieved myself right into finding ME. I continue to discover these hidden expectations of social norms planted in my head – not that I actually desire these expectations, but they are hardwired from a world pounding them in my brain.

I continue to discover, grieve, and release faulty thinking becoming motivated to change daily. ;-)

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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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Unexpected Emotions

The other night Ariel and Joshua surprised me with drawings. I wondered what was going on when Ariel asked me, “Mom, what is your favorite thing in the whole world.” My response was, “My kids.” She skipped out of the room and a several minutes later came in with a picture of her and her brothers, a panther, some flowers, my breakfast, and of course my other most favorite things 8′s and infinities. I was taken aback by it. She had never created a picture for me that like that. She had created pictures for me before, but they normally had to do with her emotions and the things that she liked.

A little while later, Joshua handed me a picture too. 

He wrote out, “I love you mom and dod.” He did it all by himself! (He meant dad, he could not leave dad out.) He has such difficulty with handwriting and spelling so I was ecstatic that he did all of that on his own. It was extra special because I know how hard he had to work. He drew a garden, different colored lines to represent each of us in the family, some eights, and infinities too. He told me that the blue line was him and the purple was me. :-) I was surprised by the emotions that I had felt. I was overwhelmed with feel goodness and a moment of appreciation. I have expressed my feelings of not being appreciated or “seen” to David on several occasions. It has come up on Mother’s Day and my birthday each year.

Not because of me, but because of David’s own triggers with those days. 

He had bad experiences growing up with mother’s day and birthdays too with his ex-wife. He found them stressful and always felt as if he fell short of their expectations. This last Mother’s Day I was analyzing my own emotions about the day. I shared with David how I never thought about how the kids do not make pictures for me or that he does not have them do anything for me like other husbands do – until, he starts acting all weird about it and makes comments that I am not accustomed to and/or I see it all plastered on facebook and people start talking about what they need to do for Mother’s Day. However, this year I got tired of managing his emotions and told him directly, “I do not want any of that stuff and I sure as heck do not want it out of obligation because of some made up holiday.”

I told him, “BUT I would like to know that I matter because right now it does not seem like I do.”   

I explained to him that even if he or the kids just said thank you occasionally, tried to help me without me having to ask, or for them to acknowledge that I do a lot around here that would be nice. I shared how I would it like to be from their hearts and that it makes me feel worse that I even have to tell him these things – why hasn’t he noticed? I suppose, that can be a universal thing in marriages. Most of the time I am fine, but it would be nice to feel appreciated without having to tell someone, “Hey! Appreciate me, ok.” :-) All of these emotions were stirred when the kids gave me their awesome pictures.

I did not realize how much it would mean to me to receive such gifts.

It was surprise and it made me feel good. It gave me a little boost to keep going and let me know that they do see me as a person and that I matter to them. It is kind of hard to know sometimes. :-) I have a hard time knowing how people feel about me, even my children at times. I am unsure and wonder if they like me. I thought for years that David did not like me at all based on how he spoke to me. I thought he thought I was doing a horrible job at being a mother, teacher, and homemaker because he never said anything. When no one expresses how they feel about me I automatically assume they think that I am doing everything wrong and/or they are simply “tolerating” my existence.

It is a lonely, anxiety-ridden world to think like that.

(It is partly induced by past abuse and because of my social confusion.) I am glad I spoke up because I discovered that he did not feel that way at all and he also, shared with me that our kids love me very much. It is difficult for me to feel or truly comprehend these things. It is not because of insecurity, I really feel as though I have a disconnect in being able to determine how someone feels about me. I have been so confused throughout my life that it is a challenge. Those who claimed to love me hurt me the most and those who treated me nicely I would discover did not like me at all. Those types of things can mess with my already socially misunderstanding-self.

Today I hold onto these happy unexpected emotions that were stirred and savor that my kids do love me – or like me a little. ;-)     

 

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“What is Autism?” Good Question!

Daniel asked me “What is Autism?” about two weeks ago. Ariel and Joshua have asked me several times on multiple occasions which is why I went in search of age appropriate books on the subject hoping that it would help – they did for about two seconds, but then after those seconds came floodgates of questions from each child. I wrote this post “Am I Autism?” back in June with the many resources that I gathered then trying to help my kids accept themselves and understand themselves. All three of them have a sense of not being like other children, while at the same time being completely unaware of their differences – it is our “normal.”

I tend to fall into this too even with all of my years of being acutely aware of how different I am I still have a certain unawareness.

I am not sure if others have this same experience or not. I did not really have an understanding of this until the last two weeks with all my observing, thought wrestling, pondering, researching, reading, and connecting other thoughts/self-awareness. I have a challenging time with explaining Autism to myself. My research is to help my kids and myself try to understand our world better. It takes time to shift from thinking “there is something wrong with me” to discovering “There is nothing wrong with me at all.” However, it is a continual challenge for me when I read other blogs, books, and various types of resources where there is frustration, sadness, annoyance, or even anger at what their Autistic children/adults in their life are doing …

I do it too! (and so do my kids) 

It is a shock to my self-esteem every time I read something from a parent that is a negative or even when they joke about their children’s behaviors. I no longer take it personally; I have had to separate my emotions to some extent. I really like reading different perspectives and I respect their unique point of view – I respect people and their differences period. I appreciate (understand (a situation) fully; recognize the full implications of.) their challenges and the pain that they go through. If I were offended I would simply stop reading them, but I am not for the most part. It still stings a little and causes me to feel badly about myself at times.

I have learned to quickly work through that, shake it off, and remind myself of who I am.

(I have stopped reading some in the past, but it was because they became hateful and rather aggressive – I cannot handle that type of writing.) I do empathize with some - I can place myself into their position and see how challenging it can be for them and understand that they need to release some of their frustrations. I get that. I do that in my own way with family and relationships. Even though I can understand, it still leaves me with lingering thoughts that something is wrong with me and my kids. I think that it hurts me the most in regards to my kids. I work so hard at trying to instill in them the self-esteem that was not built into me as child.

Then, I think about when they are old enough to surf the web and when they stumble upon one of those posts …

I wonder if they will feel what I feel – there is nothing wrong with me, BUT there is. I have the same feeling when reading many of the  books that I have about Autism. I had not been able to pinpoint what was bothering me when I read the books or watched the videos. Some of them I have turned off or stopped reading all together – the reason? The language was negativity sugarcoated with a sweet shell of oxymoronism. Things were written in the context of “Those who are Autistic need to learn how to be like the rest of us, but their brains are wired differently.” For some reason, while reading those books my head would flash of Ayn Rand.

“I AM JOHN GALT!”

Ha, I am kidding. However, those thoughts have flashed through my mind at times. I am not an Ayn Rand enthusiast; I am an open-minded individual that likes to read A LOT! I do not even agree with her all of her philosophy, but she makes some pretty valid arguments at times. (I know she is dead – her books are still alive.) Her books have a common theme and as I read those other books I felt like someone was standing there demanding that I stop being me while, cloaked with a smile trying to convince me that this was right and everyone agrees that it is the right thing to do – to stop being me and stop my children from being them. My mind can go into extremes so I am not sure if my intensity is accurate. :-) Though, my gut kept getting “wrong type” of feelings as I read certain words.

I found myself editing the words to my children or explaining what they were “trying” to say.

What if that was NOT what they were trying to say at all? It does not matter, what does matter is what I teach my children. I have been able to use some of these resources to help the kids and myself gain insight or understanding. I can pretty much pull knowledge or learn from anything. I know that they are pondering it as much as I am. I really have no good way of explaining Autism. Autism is in our DNA – it is who we are and (granted Daniel and I are the only ones “officially” diagnosed as of yet.) they need to feel good about themselves. I admit, there are challenges that I have that I wish my children did not have such as anxiety.

I know their struggle and I want so badly to make it go away, but I cannot.

I wish I could have the answers to help them with handwriting so that they are not in pain every time they have to write or give them exactly what they need when they get overwhelmed with frustration that their hand will not do what their mind is telling it to. I wish I could help with many of their other struggles that I too have had in my life. Yes, I wish they did not have to struggle with many things, but other children have their challenges too. My job is to give them better ways of coping, find tools and resources to help them learn ways to use their talents and challenges in ways that are more creative – help them find their own way to succeed. We can make up songs about anxiety! Dance to those anxiety song! Paint their spelling words, make a sentence out of pretzels – how cool are you if you can make a sentence out of pretzels?? (It can be done.) That’s what I am talking about.

Alright, back to the question “What is Autism?”

The truth is I still cannot give a clear simple answer. I find it completely full of wonder and intrigue every time I read something from another Autistic or a parent who has shared some great insight with helping their child succeed and help them to be proud of who they are. As I read from their perspectives, I find myself full of excitement and joy because of our similarities and differences. You know what else? I do the same thing when I read or meet someone who is not Autistic. I find humanity as a whole complicatedly delightful. I just downloaded all that to tell you this! I believe I have actually found a book that I feel good about. It seems to be written in a positive way that explains ASD in terms that are accepting and age appropriate for my children.

The book is The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents).

I have not read all of it, but I have found it to be a great resource to pick up and gain some insight or be able to share with others when I cannot find my words. I like that the authors share quotes and stories about and from other Autistics at various ages and stages of their life. I know, I know the title may rub some people the wrong way, along with the puzzle piece book cover, but what I have read I have yet to find it to steer in a negative direction. The language feels positive and its motivation seems to be that of helping ASD kids learn to appreciate and accept themselves. I cannot say that the language in the other books specifically for my kids age range gave such positivity. However, many of the books that are available are geared toward those who do not understand ASD not the actual person or children who are Autistic. MORE positive books to help others understand Autism is a whole other topic.

The book talks to parents in the introduction to explain the book and its purpose.

I found that interesting and I really thought it was great how they encouraged parents. They seemed to motivate into the direction of focusing on creating an atmosphere of building into  ASD kids and using the book as a guide to help on their journey in life. Sigh … I sometimes I wish I would have had all of this stuff growing up. Alas, I did not, however, I do get the privilege of helping my kids. I am pleased to have found a useful resource like this one. Our Autism conversation will continue for the rest of our lives. It is casual and I only talk about it when they want to talk about it. Autism is “normal” to us – we are Autism every day so we really do not need to “talk” about it all the time. I find it interesting that all of this has come up in our household because recently, quite a few parents have been writing on the topic of talking to your kids about their diagnosis. I love it when that happens it kind of feels like we are all in sync or something. ;-)

I will share some related things that I have read or watched.

 

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