Tag Archives: Autism Acceptance

Family Reunion – It Felt Good To Feel Accepted

This past Saturday was my big family reunion from my dad’s side. It has been over 10 years since we have had one and it has been that long since I have seen many of them. It is a little different for me because I had not lived here for so long; I missed many family gatherings and events that my sisters and other family members had attended. It fed into my feelings of not belonging, and isolation from people I was supposed to have some sort of connection with because of that. It escalated my social confusion and anxieties with them. However, when I would see them again I would feel an instant acceptance with many of them, not all. I feel more uneasy with certain family members that I have had more social contact with then, the family that I am referring to at the moment.

I was excited and nervous about the family reunion.

I was concerned about Daniel, I knew that he would enjoy himself, but would it be too overwhelming? Would I have to run out of there feeling judgmental eyes? Would people treat him like he was odd or admonish me for my parenting style? Would I have everything I needed to feed him? Would I have everything needed so he could have fun and not feel the sting of anxiety? So many questions! And they didn’t stop. I had plenty more for him, and then I had more for Ariel, Joshua and ME! I scripted, I planned, I prepared, I did all that I could think of to make this the best day possible. The good news is that I did not do that for months or weeks, I did start the week of because my own anxiety started to set in.

My anxiety had more to do with seeing my youngest sister because I have not talked to her or seen her in a couple of years.

From all that I have pieced together she either hates me or doesn’t care one iota about me and my kids. Either way, it stirs anxiety because of the uncertainty of the relationship. If you hate me, fine just tell me. If you don’t care if I exist at all, fine just tell me! I am ok with that – I am not ok with the not knowing. It caused me to be in almost hysteric panic state before leaving, but I believe that was just a trigger. I think with all of the schedule changes, school starting, mom coming in town, David being gone, my leg being hurt causing me not to be able to be as mobile as I normally am and the lingering “Oh, my goodness I am going be around people for hours!” the relationship confusion and uncertainty was what my mind focused on as a negative way of stimming.

So I got passed all of that and it turned out she did not come anyway.

I had had several interactions with family members that I do not talk to much on facebook too where I explained myself clearly and was open about being confused by their comment. I told one that I was Aspergers and another one about my social confusion. I had a moment of panic … for a few hours, but then something wonderful happened, they accepted me. They did not come after me with any sort of rude or dismissing comments they either “liked” what I had to say or explained themselves. I have found myself telling people more and more what is actually going on in my mind and explaining what I mean. I have become more open about Aspergers, my anxiety, depression, triggers, and how I process things too.

It has made such a difference to use my voice (in writing mostly).

I know that this blog has been the springboard for my new ability to do this with people in my physical life. (It has taken several years!) My family here, my dad, and step mom who live about three and half hours away have all been trying to be understanding and accepting. I have noticed major changes in how they speak to me and interact with both Daniel and me. I feel that with me being more open and able to explain my feelings/thoughts that it has contributed to our relationships moving in positive directions. It has taken me time to adjust and accept these changes – it is hard for me to trust after so many challenging relationships, but I am working at it. Ok, let me venture back into the great acceptance that we received as a family at the reunion.

Keep in mind; I am not sure we would have been able to go to a family event like this last year.

This summer has been filled with many unexpected “firsts,” for the kids and me. I am not sure that I would have been able to handle going to the family reunion on my own last year; I know that two years ago I would have most likely opted out. The kids did great, none of them were anxious with the fear-type anxiety they were excited/happy anxious. I was too after; I worked through my other anxious feelings. I felt at ease, I did not even think about what others might think or do by the time I got there. The kids and I were all smiles and ready to see people. I had already prepared myself for all the hugging, they are all very huggy and there are actually times when I do not mind hugs when I feel safe and I have prepared for them.

No one forced the kids to hug them and they just let them run around and be kids.

Daniel had to wear his sound reducers the whole time. We had to take several breaks outside so he could have some quiet, but it was good for me too – we gathered ourselves and had the ability to go back in. He was non-verbal the whole day, it was too overwhelming, but he did communicate to me through sounds, gestures, and taking me places to let me know what he needed/wanted. He was incredibly happy. He smiled all day long, went up to people looked at them and studied their eyes. No one got upset or agitated. He walked around to all of the tables sitting down in a chair listening, looking, smiling, or he wandered around the table looking in close at people and smiling at them.

Everyone was very kind.

They did not give him strange looks when he was hand flapping or while he was walking the perimeter of the building inside – we did need to walk outside too. He went to my aunt a couple times when he was getting overwhelmed and wanted her to hold him on her back while walking around or rocking. I normally do that at home or when we are out, it is rather amusing to see. He is almost as tall as me and over 60 pounds; when people say anything I say, “This is why I do boot camp so I can carry him.” Obviously, that is not the only reason – people have strange reactions when they see it so I use that as a way to ease the situation.

Ariel and Joshua had so much fun too.

They ate treats, played with water balloons, ran all around outside, and played with other kids. My aunt came up with a game for the kids to go around to people that they did not, write down their name, and one fact about them. Ariel went off all on her own and I went around with Joshua to help him write the things down. We went to one table and they had mentioned something about Daniel’s sound reducers. They thought they were head phones, I told them what they were and also shared the he was Autistic. My cousin looked at me and said, “Really? They think (insert name)’s oldest boy is Aspergers.” I said, “Well I am diagnosed Aspergers and this little guy is Aspergers too, so it does run in the family.” I smiled at him and noticed that his face lit up.

We were able to speak for a little bit, but not much – I believe that it may have given a little hope or at least peace when I said it.

I am not too sure; I do know that it was a positive experience. When I was saying my good-bye’s he hugged me and said, “I love you.” It was a moving moment for me because even though we had not had many interactions and had not seen each other in a very long time, I knew that he meant it. I actually, felt a lot of love on Saturday in a way that I have not been able to before with my family. I know the kids felt it too and Daniel especially, knew that people there cared about him, accepted him, and loved him. He knows immediately when people are not “feeling the love” so to speak and he wants no part of them or the environment. We had been there for over five hours; though Daniel did not want to leave it was time.

I was still not sure how the rest of the day would go.

After such an event we all need to decompress and sometimes Daniel’s only release is to meltdown. I wasn’t sure if our night, or the next few days were going to be filled with decompressing. I was feeling that and the need to get home quickly, I had to have several people help me out with all of our toys, bags, cups, etc … And all looked grand on the horizon then, by accident and fluke a water balloon hurled across the parking lot and landed right into Daniel’s bin of prized possessions – either electronic or solar-powered, fragile delicate solar-powered flowers and critters. There was a moment of shock and then, I uncontrollably lost it with “Oh, no! Oh, no! Please, God no!”

I grabbed a towel to try to dry off everything.

I was a frantic mess. All that was running through my head was If any of these are broken this day is ruined. All the happiness is gone! I will not be able to calm Daniel down. My night and the next few days flashed before my eyes and it was not pretty. His toys are not easy to get I have to order them online which means that it would take a couple of days to get here. I just wanted him to have a great day; I wanted all of us to have a great day. I wanted a positive memory so we could do it again. I wanted him to keep all the joy that he had. I knew that I had to gather myself, I walked away trying to get his solar-powered flower to work and I couldn’t – I was almost in tears. Then, the next thing I knew Daniel was standing close to my side, he was quiet, and calm.

He reached under his flower and clicked something, it was working.

He looked at me with his sweet face as if to say “It’s ok mom.” We walked back and my uncle brought a soothing calm presence too telling me, “Daniel is calm, you are calm. Everything is ok.” He was right, I apologized to Daniel letting him know that I panicked because I thought it was broken and later at home I explained to him how I was overwhelmed too. The kids and I talk openly about our challenges. Daniel has started to feel more comfortable and less confused knowing that I too have similar challenges. It has helped him even more to know that Ariel and Joshua have also had similar challenges. It has helped their relationships because it has helped his confusion as to why they respond certain ways.

I admit after I got home I struggled with feeling embarrassed about my meltdown.

My step mom texted me later to see how Daniel was doing. (He was doing fantastic and has been. Needs additional breaks and downtime, but we can do that!) I told her that I was struggling with feeling embarrassed, but I knew that it would pass. No one said anything to me to make me feel bad; they understood that it was a response toward other things. They may not have known the full extent, but they understood I was overwhelmed. I have longed for such wonderful experiences with my family. I find myself feeling an array of emotions about all of it, the tears start to well every time I think about it – they are good tears and cleansing tears. My heart swells at Daniel experiencing such love and acceptance; I feel it for Ariel and Joshua too. It is just a little different with Daniel though, I am not sure how to explain it.

I think anyone who has felt what I have throughout my life may understand what I mean.

When you feel that sense of being rejected, not belonging, confused by relationships, one could understand how amazing it is for someone you love to not feel that, especially your child who is already rejected by so many in our society simply because they are Autistic. Because of lack of understanding, denial, personal fears, etc … To be rejected by family because of it contributes a certain amount of pain that I have no words for, and I know there are many families who know this pain. It has moved me beyond any expression to have my family be so embracing of Daniel and us. It has changed something in me and given me a new sense of belonging, I still struggle with that. It is not all washed away, I have years of triggers, situations, confusion, and pain that will not disappear – it may lessen though. That does not mean it will not creep up and linger all sorts of distortions in my mind at some point, the difference now is that I am able to use my voice, even when I feel afraid.

There is so much going on in my mind I cannot get everything out.

I would like to say, if you read this and your family has not been accepting or even open to understanding autism you are not alone. For years, I felt alone and hurt feeling that my family rejected us because they did not understand or want to understand. It takes time to process autism; it makes it more challenging because there are such vast views and ideas. It took me time to work through my own process for Daniel and the process of accepting my own diagnosis. Trust the process, find people who can and will support you now, right where you are at, seek out people who build into you – it may not be family at this time, that is ok. Because I found people online that have supported me in healthy ways, I was finally able to articulate to people in my physical life what I needed and wanted in ways of support and relationships. I cannot give clear ideas sometimes, there are days when the support I need is to be there – no talking or touching just there. It can be in a text, a facebook message, or in the same room.

If you can find people who will support, stay (physically or virtually) with you, and accept you when you can and cannot express yourself, I think that is a good thing.

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Happy Autistic Pride Day!

 

I admit, I am not really in a typative or talkative mood today. I am social’ed out and this week has been rather exhausting; with David being gone it has caused too many ripples in our routine for the kids and me. However, I still felt like sharing in the celebrations of Autistic Pride Day! I decided to share some photos of art, and some of the things that the kids like to do and collect. I take pride in how they express themselves. I enjoy walking into a room and not knowing what drawing I will see, what has been created, what items have been lined up, or what stuffed animals will be occupying our kitchen chairs. 

I am sharing a couple of my recent paintings too.

When I find myself too jumbled with emotions and thoughts, I get in a stuck state. Sometimes it is so intense that I am unable to even write poetry, which is normally my way of expression when I cannot talk or write it out. When I am unable to do those I tend to draw repetitive type of  things, such as infinities linked together or a certain flower shape, swirling lines, all sorts of shapes really. Though Ariel has not been officially diagnosed, as she gets older I see more and more traits to indicate that she too may be an Aspie girl. It is not pressing at this point to get her diagnosed. She takes pride in being herself and embraces her unique ways. She embraces her brothers and likes that we are all so different — we fit very well as spectras being diverse in our own ways on the spectrum. (Not to say that it does not bring about interesting challenges, but all families have them.)  

Anyway, here is us taking pride in being Autistic and embracing our unique selves, hope you enjoy. 

Click on the image to go through slideshow or click [Show picture list] to see each image.

Some of Daniel’s Expressions

Some of Ariel’s expressions, she creates all sorts of image stories that can be found strewn throughout the house. 

Some of Joshua’s Expressions — he has a lot more, but he also has them scattered about the house so it was hard to keep it limited. He LOVES Sonic and has nick-named himself Sonic. 

A couple of my expressions, and a poem that came out as I was waiting for the images to load. :-)  

Proper Pride

hearts too delicate,

fragile in the face of our

world, but resilient -

steadfast, worthy, valued,

in the quest of change -

a path paved by those

who once were silenced; now SHOUT!

~~~

A couple of things that I read/watched today. 

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Summer Adventures

Our summer schedule is full and has several new adventures. The kids are trying new things and I am trying new things. David will be traveling a little more and is working on new projects while continuing his normal work duties. David’s mom is coming to visit in July. I feel good about all of it so far. I am mostly excited, but I am anxious as well. My mom was in town for this past week and it was such a wonderful visit. I am still a little in awe at how incredible it was. She was in good spirits, the kids were, and so was I. Compared to last year’s visit it was (as mom put it) “like night and day.” When I compared our situations from last year to this year I could see all the positive changes that had been made from us and with my mom.

I am in a much better mental and physical state.

The kids are happier and feel better since we moved into this house. Daniel has been able to do more things for longer periods of time and enjoy himself. My mom changed jobs, transferred to a new store, gained a new boss (who she believes is an extroverted Aspie :-)) and she has been able to work through some of her financial burden. (Wish we could get to that point, but I am happy for her. It has been a long struggle and she works hard.) Last year, mom came when the weather was still cold. My mom cannot handle the cold and it determines her mood — she cannot help it. She is miserable in the cold. Our last house was a sensory nightmare and it affected my mom, she could not stay over for very long.

She was in a job that drained her physically, mentally, and emotionally.

All of these things were not a factor this year and Daniel took notice. He feeds off of our emotions. I was still working through my automatic response of trying to manage my mother’s emotions last year. It made me on edge, and anxious. Daniel felt that and responded to the negative emotions. For those who may not know, my mom is Aspergers as well. My mom was in a negative state mainly because she was tired and cold, Daniel responded to that. Although, we had a fairly good visit compared to this year, it was slightly alright. :-)  Daniel told me last night, “I loved Grammy the same as you the last time she was here, but now I love her more.” (That is a good thing.) He enjoyed his time with her, so did Ariel and Joshua. They played, told stories, watched TV, we celebrated Joshua’s birthday early so he could have a party with Grammy, we went out to eat at a restaurant AFTER music therapy, and we went to the museum.

The science, art, history museum!

That would not have been possible a year ago, AND we forgot Daniel’s sound reducers. We had a moment of not knowing if we would need to leave, but he decided to stay and we had a fabulous time. Even with the 35 or more little girls and boys outside hooting and hollering, it was some sort of day camp. Each social experience did take transitioning and mind calming activities. Such as when we got to the restaurant Daniel needed some downtime, he became fixated on my mom’s hair because she changed it. He had never seen it the way she styled it and he did not like it. He could not let it go and was almost in tears about it. He needed to process all the things that he did in music therapy and he needed to process the change of my mom’s hair style.

I took him for a walk outside and we observed all the grand things in nature and air conditioners.

He was fine after that, all was good and he enjoyed himself. He wanted to go — he loves going out to eat. Eating out has not been something that our family has been able to do much. I am happy for him because he had such a wonderful time. He was emotional the day that she was supposed to leave and it took a lot to comfort him, but only an hour later I got a call; mom’s flight was cancelled and she was going to stay an extra day. I am not sure what this did for Daniel, but he was able to find some sort of closure. He was fine with her leaving yesterday and has not been in an emotional response state leading to meltdowns as in the past, or even on Thursday when she was supposed to leave. It is amazing how when we find our sense of closure we can process and move on so well.

So that was our Grammy visit adventure, everyone was happy and had a great time.

Onto our other adventures, beginning next Tuesday (for 8 weeks) Daniel will start a summer enrichment program at his music therapy. When I say music therapy I am not referring to just playing instruments or using music as fun playtime type of thing. They are using neurologic music therapy and Daniel has shown some significant changes in his communication, expression, and abilities to self-sooth. It has been rapid and at times, I have been moved to tears at how much joy he has been able to experience because of the changes. (What’s the difference between NMT and regular music therapy?) Several things that they will be working on are reading and math general education, yoga/body work, social groups, supported communication training/practice, and daily neurologic music therapy. They plan on doing parent education and training as well. He will be going from 9 am to 12 pm and this is the first time that he will be away from me for this amount of time outside of the home or with a family member.

On the first day, I will stay around for awhile and see how he does. 

He going to be in a group with Autistic peers and this will be a new experience for him too. I think this is going to be good for both of us. I believe this is going to provide him with a different sense of independence. The additional staff seems enthusiastic and good. I met the teacher and she is one of those people that in her presence she seems to pour out bubbles of happy. I like her and think she will be great for the kids. I am looking forward to this new adventure for Daniel and myself, but I will say I am anxious. I plan on spending that allotted time with Ariel and Joshua, they are happy to have some mommy time. I know that this is a good thing for all of us, but Daniel has been so dependent upon me that it is hard to let go. So many things flash through my head of what I do to ensure his days go well or ensure that he has everything that he needs. What about the things he needs assistance with that I for the most part have done? Can they handle it!? Of course, they can but I am his mom, so I worry.

I have signed up Ariel and Joshua for a week long summer camp at the children’s museum. 

I am trying to fight back my panic attacks! I am kind of kidding. ;-) This will be the first time that they will be away from me all day. The program runs from 9 am to 4 pm. I know that it will be good for them and that they are going to love it. I am just a little anxious because it is farther away, not much but enough for it to take longer than 10 minutes to get to them if something were to happen. I know, I know! Helicopter mom much? It is not that I have not wanted to do things like this for them it is that we have not had the funds and/or their own anxiety challenges did not make it possible. Joshua’s sensory and social challenges can become overwhelming for him as well. He responds differently and it can be confusing to people who are not familiar with him. So we will all grow a little more independent this summer — it is a very good thing. I have other things in the works, swimming, field trips; we are training for the kid’s half marathon, and whatever other activities I can get them into.

As for me, I am focusing on ideas and ways to help the community with the Autism Caregivers Support group.

I had my first meeting last week and I loved it. I created a closed facebook group so that we can stay connected, share resources, experiences, and get to know one another. This week has been too busy so I have not had time to put more into it. I am helping in any way I can with the school at the music therapy and sharing as much as possible to help. I am studying for my group fitness certification and … I decided to train for the adult half marathon. WHAT? Yes, I have caught the desire to run. Yesterday, I ran almost four miles which is huge for me. I have been encouraged by so many people and several of my friends from the Y are doing it. They inspired me. I realized that one of the reasons why I was not running was because I had “labeled” myself as not being a runner.

What that means is that at some point, I made a rule in my head that I could not run because I did not fit MY criteria for who a runner was supposed to be.

I did that with writing, painting, speaking about Autism, education, all sorts of things. Every time I realize that I have done that to myself I have the urge to try. I do not need to be the best; I just want to show myself that I can. I am a natural runner it is in my DNA. Practically, my entire dad’s side of the family runs and they are good runners. I want to do this for myself, but I also want to motivate my kids because they are natural runners too. It has been a positive experience taking them to train for their marathon. They will only run the last mile on the day that they have their marathon. The rest of the miles will be recorded until the day of the race. I have made this much longer than expected (and seemed to use the word “good” about a zillion times.) BIG SURPRISE! I think that is most of our summer adventures. This summer has a lot going on, but I think the experiences are going to stretch us and have positive outcomes overall.

What does your summer look like??? 

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IEP: Components to Consider When Seeking Accommodations III

Continued from: IEP: Components to Consider When Seeking Accommodations II

There seems to be much focus on controlling behaviors instead of actual academic goals or the emphasis is placed upon trying to get the child to fit into an environment. The environment itself could actually be causing them to manifest “behaviors” that the teachers/parents/IEP team want to stop. For Autistics and for some of those who have learning challenges, maybe Autistic with learning challenges, and/or additional components such as ADHD, anxiety disorder, depression, sensory processing movement is essential to being able to learn, process, and retain. Movement helps the mood, it helps the brain make connections, stimming releases stress and anxieties when forced to control our movements or limit them it can limit our abilities. This was an interesting read AUTISM IS NOT COGNITIVE… IT’S A MOVEMENT DISORDER!

Not only is there the emotional aspect of wanting to please and not being able to stop ourselves, but the words spoken or actions taken can be traumatic.

It can make us feel wrong or bad about ourselves. It can be confusing. Why is it so wrong to hand flap, jump up and down, clap, hum, or twirl? Granted there are some stims that are harmful and of course they need to be considered differently, but the body’s response or the stim is a form of communication. We are telling you something. I will use myself as an example, if I am in an emotional discussion and the person will not stop talking, I shutdown. If I manage to voice that I need them to stop talking and they do not I feel like my insides are bursting apart. I am jumbled, confused, overwhelmed and literally feel the words on my body and go through my body. I start to panic and my uncontrollable form of outward expression is to dig my nails into my flesh.

I cannot talk, I can only claw, dig, scratch, pinch, and pull at my flesh.

I don’t want to, I try to stop but I cannot. I have left some horrible marks on me and I have caused myself to bleed on numerous occasions. I have managed to stop this for the most part and there was a long period of time when I did not do it, but I had not been in those types of circumstances — a few years ago I was and like I had not stopped at all I began doing it again. I felt unheard, swallowed by confusing words and emotions, I was unable to communicate and when I did it was mixed up and misunderstood. I did these things in school, but I had learned how to hide them. Social confusion can play a role in the responses (or if you are accustomed to the word behaviors) as well. They can be a factor for a nonverbal child, but they have no way of communicating it to you.

I have discovered, since Daniel has become more verbal many social situations that caused him to become aggressive.

I understand that feeling; I too feel a certain type of anger when I cannot figure out what is happening. It is not directed toward a person, it is a frustrated feeling that leads to anger. Confusion manifests and it creates a state of fear, to protect myself my mind goes into an anger type of feeling. I want it all to make sense, but it does not. It is frightening. I have described it as feeling like my brain is thinking and going along just fine then, something happens and it gets stuck. A pathway just stops. I can feel something, like energy or something in my brain – stuck. I try to force it to move to get to the end of the path to make it understand, but all I feel is some sort of blockade and I see black. When my mind is operating in a way that is my “normal” all of the pathways move with ease and seems to go very fast – zoom, zoom, zoom!

Speeding along, making connections, they are zipping by like rapid streams of colors in blues, yellows, and sparks of white.

These get hindered with social confusion, sensory processing challenges, my learning challenges, anxieties, depression, PTSD (C-PTSD) and a factor that I now believe to enhance much of this my synesthesia. If you are not familiar with synethesia it may be something to consider. Many Autistics have synethesia as well; it affects our sensory processing and can affect how we feel emotions causing them to be incredibly intense. (Hearing Colors, Seeing Sounds: Synesthesia - quick video, Synesthesia - wiki) Things to investigate are the different sensory processing challenges. I share several in the post; a great reference to start with could be this Aspergers Checklist: Sensory Sensitivities. Some days social confusion/stress and/or routine change will enhance sensory issues and vice versa. Every day is a struggle with dysgraphia here, but when the kids are learning something that requires a lot of processing handwriting will go from not being pleasant to screaming and tears after one word.

We do not attempt it on those days.

Another example would be thunderstorms, if there are storms school is a heightened anxiety for Daniel. (We do have weather conditions written into his IEP.) The anxiety from anticipating thunder and lightning causes him to be under a large amount of stress. He cannot take a test that day and there is no reading. In contrast, when it is sunny and perfect outside he is able to fly through his school work, some days he can read out loud, and can attempt to write. Daniel and Joshua both have visual processing disorder. (Me too) There are some days when they are so affected that they hear sounds muffled, jumbled unclear, and they can seem like they are purposely not listening. I have had to explain this to their teachers and therapists because they will press them or not understand why they are responding in certain ways. Joshua will shut down and start crying, his mind feels confused and flustered; more words or repeatedly requesting him to speak or follow the instructions will lead him into a meltdown. Daniel will ask, “What did you say?” Over and over again. He has heard the words, but they make no sense.

Here are several resources to help identify visual/auditory processing disorder.

Visual and auditory processing are the processes of recognizing and interpreting information taken in through the senses of sight and sound. The terms, “visual and auditory processing” and “visual and auditory perception”, are often used interchangeably. Although there are many types of perception, the two most common areas of difficulty involved with a learning disability are visual and auditory perception. – Visual and Auditory Processing Disorders

I found several things on this site useful spdstar.org. They gave this break down of the sensory system.

DESCRIPTION OF THE EIGHT SENSORY SYSTEMS
The five basic sensory systems:

The three sensory systems Ayres focused on in describing sensory integration dysfunction:

The most recently discussed set of sensations related to internal organs

Our executive functioning can be easily categorized into being unorganized, purposely not completing tasks, or not listening.

Executive Functioning Disorder 

Dyscalculia  

(Click on image to enlarge)

download (4)

Dyspraxia 

(Click on image to enlarge)

http://www.dyspraxicfantastic.com/327/

http://www.dyspraxicfantastic.com/327/

 

Dyslexia

(Click images to enlarge)

 

http://helpingchildrenwithdyslexia.com/blog/

http://helpingchildrenwithdyslexia.com/blog/

http://www.tes.co.uk/teaching-resource/Dyslexia-Difficulties-Mind-Map-6328548/

http://www.tes.co.uk/teaching-resource/Dyslexia-Difficulties-Mind-Map-6328548/

I believe that nonverbal learning disorders are not considered nearly enough.

  • Nonverbal Learning Disorder (NLD), also called Nonverbal Learning Disability, is a developmental disability which all too often goes undiagnosed. Individuals with this potentially debilitating disorder generally suffer in silence. ~ NLD on the Web!

This is not exhaustive, but I tried to give more information to help bring to light the many challenges a child who needs an IEP can have.

Knowing this information can help you know what to look for and what to ask for in the meetings. If at all possible, ask your child about their experiences. Try to learn through their communication what their needs are. Once you realize all of the factors that are or can be contributing to making it more difficult for your child the more equipped you are and the more understanding you can become toward their needs. Instead of thinking of everything as a behavioral issue reconsider the responses of the child. (Challenging behaviour in children with an ASD) The world can be very confusing and lonely to those who think and operate differently. It is a matter of breaking each one down for your child that applies and write out their challenges and strengths in the areas that apply.

Learn as much as you can, I suggest trying to get out of the mindset of thinking that it is all autism related and that the need is to fix or stop behaviors.

Though we are greatly enhanced or hindered in areas because we are Autistic, we also have comorbid coexisting with our ASD diagnosis, (COMORBID DISORDERS WITH AUTISM & ASPERGERS) that can range from social anxiety to dyslexia. Our kids should be given the respect of being thought of as curious, thought-provoking learners. There could be other reasons for their responses, they could be bored. That may be a hard to grasp sometimes when you can only “read” their outward expressions which carry very different meanings to you as to them, I too misunderstand my children’s expressions, but I try to keep on learning. I share more sites below that should help you obtain information to know what is available in your state and maybe accommodations you or the IEP team may not have considered. The first one is specific to ADHD, but the accommodations listed can make the learning environment for special needs and learning challenges much better as well.

I had to stop because it was getting too long and I think I covered a good amount in these posts – I do hope they are helpful. AND thank you for reading! Feel free to leave a comment, insights, whatever your experiences that are beneficial as well. :-)

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IEP: Components to Consider When Seeking Accommodations II

Continued  from: IEP: Components to Consider When Seeking Accommodations

To give clarity about these posts, I am giving suggestions, insights, and trying to bring some awareness that the needs of our children and their goals should be based upon their specific strengths and challenges. This is supposed to be the purpose of the Individualized Education Plan (IEP), but I have observed from reading and interacting with parents that many times terms are blanketed into one thing such as working on motor skills, but no one has looked into dysgraphia, in some cases they have not even heard of it. If there are issues with following instructions, unable to follow instructions, disorganized, repeatedly looks as if they are listening, but do the opposite or their attempts are different from what you told them some claim these to be behavioral problems.

Or automatically ADHD, there could be other things to consider — dyslexia, executive functioning dysfunction, or even taking time to observe/ask about sensory sensitivities.

To take it one step further, ask or observe if there are any social issues that may be happening. From my personal experience, I have had moments when my mind gets so confused by a social interaction that I cannot focus or discern what I am being told or asked. This happened to me as a child and many times I was able to recover quickly when I was (am) able to understand the situation. Of course, this is not going to be all the time and every situation is different, but by adding accommodations/goals to an IEP for social circumstances could benefit a child and teachers greatly. If they struggle with math has dyscalula been considered? When they become overwhelmed with sensory issues have the specific ones been broken down and was accommodations/goals written for them. I go through those and several others in my next post.

This sounds like a lot and it is, but consider what the child/person is going through. 

We have to navigate through a world that most people around us can filter through much easier and comprehend their surroundings much quicker. This is not quick and easy for anyone and I loved this comment that Shelien left on my last post.

When I first began teaching I found it very overwhelming when I’d read an IEP with 15+ adaptations. What helped me was to have the parent/child identify the most important 2-3 for me to start with. Then, once I’d incorporated those it got easier to add more. Testing accommodations were often a priority to start with, and then we could work “backwards” to ensure student got practice using the accommodations on a daily basis. And, once you’ve gotten familiar with each accommodation it becomes a lot easier the next time round!

It is a lot to consider for teachers as well, which is why the IEP should be a team effort with everyone’s input. For the teacher meeting your child for the first time or working with an IEP at first, maybe limiting the adaptations to focus on the most crucial that will make the most impact for the transition. When it comes to an IEP it can become systematic causing the identity of the child to be lost and wrapped up into goals, accommodations, frustrations, and yes, even intense emotions — if you have been doing them for a long time, or feel defeated in fighting for your child’s needs or even being a teacher feeling your own set of frustrations possibly this will give some reviving thoughts. I don’t know, I am just sharing my thoughts and hope that they are helpful in some way. Before I used virtual school, I home schooled on my own. I now use Connections Academy. I am not sure how they are for each state, but for us they have proven to be exceptional thus far. When I was homeschooling on my own, I knew at some point I may need to enroll Daniel into a charter school, public school, or some sort of alternative school.

In order to help me understand somewhat the process of an Individualized Education Plan I created my own using information that I found online that explained them.

I did find these for those who are homeschooling or considering it. HOW TO WRITE THE SEP
Step by StepHomeschooling Your Struggling LearnerQuestions and Answers for Parents of Special Needs Children I wanted to observe Daniel to learn his needs, ways to use his strengths, document his challenges, and create goals. Of course, I accommodated him, I do every day that is part of our daily lives as special needs parents, but doing this process surprisingly helped me. Not only with understanding myself much more and making sense of my school years, but it gave me more confidence to know Daniel’s and it helped equip me to know what to ask for when the time came to create an IEP through the virtual school.

Since I had never gone through the process with an actual school I was concerned whether or not I understood or had enough knowledge.

I always do that though, hence, why I research something until I feel that I have enough information – that can take hours, months, even years (decades!) depending on the topic. I was open to learning more from the process and wanted to learn as much as possible through it. I did learn a lot from it, from the teachers and the therapists too. I am still learning, love that! From the beginning with homeschooling Joshua through kindergarten I knew that he was struggling in his own ways. I made my concerns known with his first grade teacher after several weeks into it. I felt that my requests were unheard and my concerns were invalidated by his teacher. She assumed that by repetition and constant practice that he would improve. I tried those things and it turned into a nightmare for him and it was tough on the both of us.

I did my research and found ways to help him on my own.

I knew that he showed many signs of being dyslexic, as well as dysgraphia, and Aspergers. I also, I knew that he would need additional help. I told her my concerns and still my concerns went unheard and she seemed dismissive. I mentioned my concerns to Daniel’s special needs teacher and thankfully she listened. At the beginning of this year, we went through the process for Joshua obtaining an IEP that has helped him so much this year. Both boys have had an outstanding year. However, I was specific and detailed in my requests and in explaining what their challenges and strengths were. This has taken time, but well worth it. This brings me to my next point, you know your child(ren). You have the ability to share with their educators/therapists their needs, however, you may be in the same position that I was in for a while which is that I could explain responses, stims, behaviors, triggers, but I did not know why they were happening or what to call them.

Because of my limited knowledge, many of the things I observed I considered behavioral until I started to break down and journal my observations. 

This does not have to be long and detailed. You can get a small calendar or a composition book and date the pages. Any time a specific response happens, when you get a moment after the fact, jot down a quick note. Anything you observed, remember it does not need to be exact details, but just those things that pop out to you. Food, smells, people, new situations, specific homework, the mention of homework, the act of writing, thinking about a question, sights, sounds, anything. You can even make it as simple as one word as long as it is something that can help you and possibly detect a pattern. This information can lead to deciphering what is happening and why it is happening. It can give the information you need to go into the IEP’s feeling that you are confident in what to ask for and working with the IEP team for your child.

For me, I was unsettled with generalized definitions.

There are many times with Daniel that there can be several challenges overlapping and triggering each other, it is difficult to distinguish between them. Sometimes the accommodations can parallel in helps so you are not exactly sure which one the accommodation is helping, this can also trigger hindrances when they work against each other.  However, once I understood Daniel’s comorbid challenges and discovered his learning challenges I was able to find words, definitions, traits and symptoms to help me understand his responses and see how I was setting off his triggers at times. (It is not all Autism and behavioral problems.) It gave me more insight into his strengths as well and ideas on how to use them to help him. Gaining this information helped me to explain to his teachers and therapists how to work with him. It helped me gain knowledge in distinguishing when Daniel is having physical problems causing him to be upset or if it is the actual tasks, directions, situation.

Some days I still cannot tell, especially, when he is unable to communicate. BUT I do know that the majority of the time it is not behavioral. 

It is challenging to distinguish each day; I am not going to say that it is not. We have some seriously challenging days. Daniel can have different challenges or strengths on any given day, but it has become a little easier to know when to try to motivate him to do more and when to let it go. His sensory struggles are not always consistent; the only one that is the same each day is sound. He is highly sensitive to sound and if one slight noise affects him the rest of his day is a whirlwind of triggers that set off different sensory, anxiety, specific need for routines that he has transitioned from, and/or elimination of certain foods, again. It can be a gamut of things that I try to help him with. I am not sure if this is common for other Autistic children, but there are probably a number of you who can relate in some way.

Joshua and Ariel are fairly consistent. 

Anything that changes is usually triggered by some sort of social dynamic, but there are days when the boys trigger each other and it takes time to bring balance. These types of things, I can somewhat control in our learning environment. I can determine how much and what type of schoolwork they do. If you do not home school, how do you get that too for your child? With Daniel’s therapists and when he needs to speak with his teachers I email them ahead of time and tell them about his day if need be. If there is a thunderstorm I tell them because they make him in a frightened/anxious state. If he was frustrated about anything and could get easily upset I tell them. I do not expect them to stop what they are doing, but it gives them an idea of how he is feeling and lets them know not to push too hard or do things that require too much processing. I am not sure if schools do this or not, but if it were possible to make a quick reference of how the morning before school went, any heightened sensory issues from the morning, or giving a quick note if they did not sleep well the night before etc … could be helpful to both the teacher and the child.

Ask the child as much as possible; observe their progression and feelings about what they are doing. 

For instance, when Daniel was nonverbal traditional PECS did not work for Daniel. He did not get it or like it, but when I changed the images to “real life” images and sang sentences, questions, and answers in tunes that he was familiar with like “Twinkle, Twinkle Little Star” Daniel was more responsive and interactive. His communication was not verbal, but it was musical. If you know these things about your child communicate it to the team and see what can be done. Come up with specific goals, if you were their teacher what would you want most for them? It is going to look different for each child and each age, developmental delay, language delays, and different forms of communication are to be considered there is no way for me to give exact goals or accommodations ideas. This is for the parents and the IEP team to decide. I would suggest implementing a plan on learning and seeking their way of communication along with teaching.

At home, I am to control the sensory environment and make it as accommodating as possible in many cases that cannot happen in a public school.

My kids walk around, take breaks, do school on the floor, sitting on exercise balls, holding hand weights, are aloud to talk, and engage in a lot of movement while doing school. This has proven to help them very much, but it is not realistic in a public school setting. So what can you do? My suggestion would be to think about when your child is most relaxed, at ease, and seems to feel happiest/safest, share that with the IEP team and see what can be done. Outside of the IEP, consider what you can do to make them more comfortable before going to school. On particularly, challenging mornings will comfortable clothes or their favorite clothes make a difference? I know it may sound silly, but when Daniel is hypersensitive and we need to go places or try new things I put him in green colored shirts or shorts. Green is his favorite color and automatically puts him at ease, he may still be hypersensitive and could very well have a meltdown, but he recovers sooner and feels safe. Are there any toys, items, some kind of object that will bring them peace throughout the day? Can that be allowed to stay with them?

This may sound a little off, but for me one of my stims that I had all through school and still have is chewing gum.

I had gum and do have gum in my mouth practically all the time. I used to sleep with it! Not suggested. I learned to hide my gum because my teachers would not allow it and when they made me throw it away I would spiral and become disruptive no matter how much effort I put in trying to not to. I know that you cannot get exactly everything, but if worded correctly and placed in the IEP there is the possibility of getting fairly close. I cringe at even suggesting that you write anymore things down, but we all have mounds upon mounds of paper work that we have filled out for our kids. Binders full. We have answered so many questions until we cannot think anymore. Many of us can write down virtually every single thing at this point blindfolded. (Some of you may be just starting out on this journey, try not to get overwhelmed. Take breaks and focus on what you can, reach out to trusted people or even to those like me who are blogging.)

Unfortunately, what can happen is that we can become disconnected from it.

It is like when we become overexposed to something we can no longer have a response or are able to have clear thinking about it. It is exhausting going through it and if you have been going through it year after year even if things have gone well it can become like a task to check off a list. If it is a negative it can be a source of great stress, anxiety, anger, and frustration. Maybe stepping away, or finding someone with a different perspective can help you see things that you can no longer see would be helpful. After that, maybe you can go back and consider things that suddenly pop into mind that could be a trait or symptom of something that you have not considered. This does not have to be taxing or stressful, go with what you intuitively know about your child and with what you have observed. You can do this and I am most certain that it will build your confidence in knowing that you do know your child.

With everything that you see as a challenge, next to it write out strength about them. 

Remind yourself of the qualities that you love the most about your child(ren). Speaking from my experience, be ready and willing to accept that you may have misread, misunderstood, did the absolutely wrong thing at some point, and that you may need to change your perspective in what your child needs and how they need it. It’s ok, accept, change it, and move on. Empower yourself by wanting to learn new things and by looking at whatever the special need and/or learning challenge(s) there may be in a new way, step back, and try to think differently. Challenge yourself and your paradigms, think of any negative associations and try to work through them — face them. All of this is a journey that is not only about your child’s educational needs, but their emotional needs and your relationship. What they receive now and how they are treated by you, their teachers, and through the IEP process will impact how they feel about themselves and who they are for the rest of their life — yes, it is that important.

How they are perceived and treated by the adults in their life can set the tone for how they are treated by their peers. 

Next post: IEP: Components to Consider When Seeking Accommodations III (Breakdown of sensory processing, learning challenges, behavioral considerations etc …)

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Many Facets of Expression: Expressions of PosAutivity #AutismPositivity2014

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Today I am participating in the Expressions of PosAutivity, I was not sure if I was going to be able to express what I had hoped to … I am still not sure I did, but I do believe I share my positive experiences with expression and how important it is to not only be flexible with other’s ways of expression, but for ourselves as well.

Silently Spoke

I had words,
but could not speak
my eyes misled,
my smile inappropriate,
this body danced,
it pounced and pranced — I spoke

I had many words without a useful mouth,
lips tied; double knotted, invisible string
eyes blinked immeasurable worlds
ears that sang colors for no one to feel
my hands stroked brushes in minglings,
emotions without voice — I spoke

my own personal meltdowns,
shutdowns raging in a stoic face,
masked and cradled in between scratching hands,
nails penetrating flesh,
scars coated in silenced words,
erupting to speak out,
words aggressively broke free,
these fingers glided letters in form — I spoke

~~~~~~

I shared a poem first because many times, it is my only way I can express myself. With poetry, I find that words flow out easily – they are the parts of me that are stirring, but I have no understanding about them. I can write out in bursts of words, then it can take hours, days, weeks, and yes, even years to finally grasp what my mind and/or body were trying to tell me. When the words come, in that moment I feel deeply connected to myself and others who may be in my thoughts. I may not have the fullness of why, but I do know that in that moment the expression makes perfect sense and will manifest answers or connections to other things at some point in time — that brings me peace and comfort.

I think that the Autism Positivity flashblog has been an incredible source of enlightenment.

I personally have gained new insights about how people communicate and express themselves since it started. As I have experienced the various ways of expression within our Autism Community in general over the years, it has given me insights into my children, my husband, and myself. Reading from so many perspectives and personal journeys has opened my mind and heart even more each time people share. I have enjoyed reading the posts shared in our community from Autism Positivity and find such a comfort when reading the posts. This year, I am very excited to read what others have to share about expression and more from their unique points of view.

As I thought about the inspiration, my heart flowed with what I have been experiencing over the last few months.

I have been more observant and mindful of the different ways that people communicate. I have been studying how to read facial expressions, the environmental and emotional reasons for their responses, the purposes and motives for communicating, and gaining new understandings about how communication is expressed in such vast ways. I had an understanding of all of this, but I had not made many connections nor did I fully comprehend how powerful it was to accept, motivate, cultivate, and encourage each person’s means of expression. There is so much that affects the way we communicate. As an Autistic adult, I still struggle with finding ways to communicate, but in the years since blogging and creating/sharing my poetry blog, I continue to press through.

The more that I have been flexible with finding ways of expression for myself, the stronger my identity and voice has become.

As a child into adulthood, one means of communication was dance. However, I did not understand this and I know that others did not either. In the midst of feeling overwhelmed, feeling a meltdown or shutdown coming, I would turn on music and flow with the words and/or tune. I had no idea that I could actually use this to communicate to others. I only used it as a means to “get out” all of the emotions that felt trapped within my mind and body. Several years ago, I allowed myself to try new ways of expressing myself through art of various kinds. I never thought I could paint or draw anything — I did not allow myself to try because I had been labeled non-artistic based on my art grades in elementary school and from the discouragement of my teacher.

My form of expressing art was not traditional.

Since I learned to write as a child, I found that it was what came naturally to me and it was something that I could keep hidden from everyone. Though the physical act of handwriting hurt and still does (I have dysgraphia), it was something that I HAD to do. The pain was worth it to write out all of the things, worlds, ideas, thoughts, that I had in my mind. I ached to share, but I did not receive positive feedback. I was even told by loved ones that what I shared did not make sense to them or it wasn’t their thing. That is discouraging to hear, but it did not stop me from writing or creating poetry. After so many years of hiding my forms of expression, I decided to write openly to an invisible audience without any idea what would happen.

For me, there were several reasons for beginning my blog.

If I were to narrow it down to the most simplistic reason though it would be that I was seeking an outlet for expression. I was seeking some way to communicate and connect to others and myself. I longed to be heard, but my voice had been trapped for so long that it was a struggle to find my words through any means. I had long given up sharing the most hidden parts of my mind, feelings, thoughts, and views. I had learned to mimic and mask, though I have always been an outspoken person for others. That is one reason why David was so surprised by many of the things I wrote in the past, I was so good at not being me that for him to read my inner workings was a little bit of a shock — for the good, but it took him time to process. However, for me I felt I had no way to share without being corrected, judged, condemned, misunderstood, or worse yet not being heard, thus reiterating my fears and pains of feeling invisible.

I wanted to share about my journey and share about our Autistic life, but what transpired was more than, I could have ever imagined.

Thanks to our Autism journey, I have found many answers to my past. After Daniel receiving his ASD diagnosis, I chose a path of working toward helping him in whatever ways were best for him. I had no idea that seeking answers and helps for him would also help me. Through my parenting journey, I realized how important it is to me that my kids all have a way of communication so they can share what they feel and what they think with us and the world. I did not know that an Autism diagnosis would lead me to finding my voice (Aspergers/Autism Has Given Me a Voice) that I had long tried to suffocate in order to make it through another day, nor did I realize how many people had stifled me causing me to feel as though my way of communication was wrong or did not matter.

While Daniel was completely nonverbal, his main source of communication was a way of aggression.

He had no other way of expressing himself. He was not punished or forced into other responses. I am not saying that was or is an easy task, but I feel as a parent I can control my responses and be more understanding, so it is my responsibility to do what it takes to help him. Some may not see this, but for me I feel that exercise/working out is a way to express emotions or things stuck inside me, such as frustrations and anxieties that I cannot find words for, those I try to store them up in an imaginary box. I save them for the Saturdays at my Kravfit class then, I put on my boxing gloves, punch and kick it all out. I am usually screaming and yelling too as it is an appropriate environment to do it. So I knew Daniel was telling me something when he was physically aggressive.

However, it took many guesses and long periods of time to figure it out.

It was frustrating for both of us. I will be honest we still have these days. By seeking ways to help him express himself, such as creating books all about his likes, dislikes, days, events, and adding social stories, he gradually learned more ways to express himself. He has since been able to express himself more so through verbal communication and at times he will attempt art, but throughout his life one of his main forms of expression has been through music. He has always made a beat – thumping, tapping, pounding, whatever he could use to make a rhythm. It took a while to figure out, but what I recently discovered is that many times Daniel is expressing his mood through beats or rhythm.

Was he telling me these things when he was nonverbal?

I would say most likely and I missed it. I do not see this as a lost opportunity, but as a new positive that can manifest even more ways for Daniel to express himself. I wish I had known at the time, but I did not. Now that I do know it opens up new thoughts, ideas, and possibilities to explore. Music helped him learn words when he struggled with them in the conventional ways. Music is helping now in music therapy – he is gaining more confidence in his own thoughts and voicing them. We hope that on those days when he loses his words that using the keyboard or iPad to share his expressions will give him the outlet he needs to express himself. He could find that typing out his words is much better for him.

He may use that as his main means of communication — we are flexible with that.

If that will work best for him, so be it. It works best for me! Learning more about how others communicate has helped to bring healing to my marriage and to our relationship. Since David has become more flexible, he has gained more understanding in how to communicate with the kids and I. It has opened up a relationship between he and Daniel that is amazing to witness. David has his own ways that seem foreign to me and I to him, but being open and willing to learn has allowed us to find ways to communicate better, clearer, and with more empathy. Ariel expresses herself through drawings. She tends to shut down or if she is deep in thought, I find her drawing out elaborate illustrations and pictures of her thoughts.

Joshua builds his expressions or he uses objects like tape, metal items, cuts up paper, and empty boxes to share his thoughts, ideas, or feelings.

I see this in our Autism community as well. We all have our own voice, our ways of expressing ourselves, our individual creative outlets that are a spectrum of greatness. Not everyone can communicate or has found their way to communicate in our community. Some of our children do not have a way to express themselves and even our adults who are so quickly forgotten. As a community, it is vital that we are open to flexible ways of expression. We need to be on the cusp of seeking out inventive ways to make it possible for those who cannot speak traditionally to discover ways to express themselves and share. I believe the future does hold a lot of promise for the generations to come, but we also need to be focused on the here and now.

For the parents who long to know what their child wants, needs, and the thoughts that they have to share.

For the Autistics now who desperately want to be heard and understood, we need to be mindful and observant of what responses are truly speaking instead of assuming or expecting everyone to express themselves in the same ways. I am not sure what to look for, but being in such a multiplex of ideas, expression, perspectives, and talent has broadened my awareness and understanding of my own ways of communication. It has given me an appreciation for how and why people express themselves the way they do. It fuels my desire to want to see everyone find their own way of expression and feel accepted for it. I see such value and importance in being flexible because it could be the key to helping someone who felt as though they would never be heard or overcome with feeling invisible the opportunity to express themselves and let their communication be loud.

Who knows what sort of wonderful ideas, thoughts, person we could be missing out on simply because we have not been flexible and accepting of their way of expression.

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Expressions of PosAutivity #AutismPositivity2014

I am excited to share this — only a few more days!

The Third Annual Autism Positivity Flashblogon April 30th, 2014!!

Join us in honouring diverse forms of communication and in celebrating Autism Acceptance and we will once again flood Google with positive messages about Autism. 

“Expressions of PosAutivity: #AutismPositivity2014″

Screen shot 2014-04-21 at 6.45.04 PMExpressions of PosAutivity is intended to be a celebration of the multiple and varied ways to express experience or convey ideas. This year we hope to highlight the importance of flexibility in communication within our diverse community and honour multiple forms of personal expression, from the written word, to art, to photography, or a video (as a link), or…

We invite you to explore, share, and celebrate your moments, stories, or images of courage, strength,  and/or positive identity and pride in a way that speaks to you and rails against stigma. Express something PosAutive about autism, about being Autistic, or about the Autistic person/people in your life, etc.

Last year and the year before, hundreds of bloggers came together in a show of support and solidarity in response to negative stigma. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we this year invite you to participate in an intentional celebration of acceptance intended to highlight the importance of flexibility in communication within our diverse community.

We welcome all of you, anyone who is Autistic, anyone who has an Autistic person in their life, and all who blog about autism to share a message of support, wisdom, hope, and pride to this year’s flashblog by posting tohttps://docs.google.com/forms/d/1fWjZ76uOG2KK3u0EsZll12EQ_6goDNVzEKK2BBZ8R7k/viewform

Please join with us on the last day of Autism Acceptance Month – April 30th, 2014 – in a Flash Blog of Autism Positivity.

To participate:

1. Publish your post on April 30th in the following title format: “[Your Blog] Expressions of PosAutivity: #AutismPositivity2014″

2. Share your post on Twitter, Facebook, and any other social media site using the hashtag #AutismPositivity2014

3. Add your link to the Autism Positivity website (submit here or above) and grab the badge from the page tab above. (Ooops – the badge is not yet ready – but you are welcome to use the image in the body of this post)

4. Share/reblog this message to your blog, page, etc.

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Thank you,

The Autism Positivity Project Flashblog Team, 2014

If you have any questions, please contact us at autismpositivity@gmail.com

We can also be found on:

Facebook: https://www.facebook.com/ThinkingAboutPerspectivesAutismPositivity

Pinterest: http://pinterest.com/positivityautie/autism-positivity-2012/

Tumblr: http://autismpositivity.tumblr.com/

Twitter: @PositivityAutie

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No Kisses Means Love

This was a great conversation Daniel and I had this morning. :-)

Me: Daniel can I kiss you?
Daniel: No, I don’t like kisses.
Me: But I love you so much, I want to give you kisses.
Daniel: That is love, no kisses.
Me: Not giving you kisses is love?
Daniel: Yes, no kisses is love to me.

images (4)I am not a fan of getting kisses myself or giving kisses except when it comes to my kids.

I do not like mouths anywhere near me. I have issues with people’s mouths and my own mouth. Lips are another whole aspect of strangeness for me. It is not necessarily that I do not like people’s mouths, but all that is going on inside of the mouth is too much. Lips are odd and move, they are unpredictable and no telling what words will come out of a person’s mouth. I rely on lips and mouths much of the time to help me navigate through communication. However, I am not sure what Daniel was talking about has anything to do with my own quirks and issues with the mouth.

I was overjoyed to hear Daniel express himself in this way this morning.

It pounced my brain into thoughts of how each of us have our own idea of what love is and how it should be expressed. We have our own expectations and desires, yet how many of us sit back and think, Is this truly what the other person wants? How many times have we felt rejected for our efforts in sharing our affections? How many times have we felt unloved because someone else expressed their affections in the way that they wanted, not considering you at all? It made me entertain many thoughts about love and how we share our ways of loving one another. I have been hypersensitive to wanting to express love to other’s in the way that they want, but in all of my observing of them, cataloging their personality and likes, pondering if they would truly like something or not, and trying  so hard I find that I still fall short.

The reason is that it is not natural.

I express myself in different ways and my way of affection is not simple. I will not send someone flowers and think there I have adequately shown my affection. No, I will spend days or hours looking at flowers. I study the bouquets and seek out just the right colors, then after all the time and effort I spend I normally abandon it. Why? Because I panic, I become afraid that they will not like them. Past experiences of being ridiculed or rejected for my ways of showing affection fill my mind and I cannot follow through, unless it is someone that I have a positive connection with. Even still I question whether they will like it, feel the emotions that I was trying to express, or if they will question my motives. My mind fills with thoughts or wondering whether the person wants anything from me anyway. Why would they care if I sent them anything? Do they even know that I exist? About a month or so ago, my heart was heavy for my sister who is pregnant.

I am not sure why, but I had been thinking of her for days.

Every time I went to the store I looked at cards and other items trying to find the perfect thing to send to her to let her know that I was thinking of her. After weeks of this, I did end up finding a few cute baby outfits for her. It was all I could do to show her, but she is a woman who likes things like flowers, the spa, getting her hair and nails done, all sorts of things that I cannot relate to or even know how to express affection when thinking of her. I cannot pick up a phone and tell her that I am thinking of her. She is a phone person and very talkative. I cannot talk on the phone; it is a nightmare for me unless it’s my mom. We talk directly, quickly, and know when it is time to get off the phone — we do have awkward silence sometimes, but we understand because we are both Aspie’s.

After talking to Daniel this morning, it reminded me of how much my ways of affection have been met with unfavorable responses.

It caused me to hide, mask my own needs and my own way of expression. It has caused me to give up for the most part with people. Not because I don’t want to express my love and caring toward people, but because it takes so much out of me. To give so much, only to feel rejected for being myself is too much to bear. However, upon thinking more about it I realized that many people in my life may feel this way in regards to showing me their affections and ways of caring. I can understand how hurtful it can be to them, but if no one says anything how am I to know? If no one listens to me when I have shared that I do not feel loved when they show affection in certain ways, how will we ever bridge that gap? It is respectful to listen to people’s boundaries and needs for how to be loved. I think we need more written and shared from Autistic’s perspective and needs of affection.

We are all unique in our needs, the generalized ideas that society has given us as “proper” means of love and affection feel shallow to me.

They feel easy, and as though there is not much thought given into them. An example of when I feel the most loved is when I express how much I need quiet and I am given the freedom to talk or not talk. When David gives that to me I feel like he truly cares and that is better than any gift or hug, but for Daniel he does like hugs most days. He likes to give hugs and get them, but they have to be big bear like hugs. (He did not always like hugs.) When he wants to show affection he will come up and give great big hugs, many times it is not at the best moments. Other times he will quietly gather his toys and sit next me, he will smile and giggle then, continue in his quiet play. They can be random and sudden bursts of unexpected affection. I tend to do that too, a sudden burst of love or deep emotion overcomes me and I have this uncontrollable need to get it out.

Then, as suddenly as it came it is gone.

I have learned that these bursts are too much for people sometimes and over the last couple of years I have learned to filter them into poetry or stories. Poetry never rejects me and my characters all understand me. In a way, I give myself the much needed outlet for expression and freedom to share my affections and love that I am craving through my writings. I have to show myself love because no one else knows how to love me and I am still learning how I need to be loved, along with how to communicate it to others. There have been many occasions when their expressions have been more painful, confusing, and harmful to me —  instilling more feelings of isolation, rejection, and feeling misunderstood. This morning with Daniel, I was reminded of how much we as people need to learn to respect the various ways that we need to be loved. We also, need to have the freedom and safety of being able to tell people what we like and do not like.

As a child I had to give people hugs or kisses.

My personal boundaries were not respected even when I voiced clearly or had meltdowns about it I was demanded to give adults the affection they wanted. I still feel the trauma, yes it was traumatic for me, of being forced to kiss my grandfather whenever we were leaving my grandparents house. I would be overcome with dread the closer it got to leaving. He made me kiss him on the lips. If I did not, he would make a fuss about it and my mom and grandma would make me do it. My mom would say, “Angel, just do it so we can go!”  She did not understand. I hated his lips, his mouth, the way he said, “Come give me some sugar” it makes my stomach queasy just thinking of it. There were other family members that I did not want to hug, but I was forced to not physically, but emotionally manipulated into doing so.

I do not understand why parents and family insist that a child must hug, kiss, or sit on people’s laps that they do not feel comfortable with.

I do not make my kids do any of that and if the ADULTS take it personally that is their problem. That is another rant, I suppose. I will stop here resting in the peace that Daniel expressed himself and let me know a little more about what love means to him. I want to know the ways that my kids want to receive affection. I want to share my ways with them as well, the more we express and learn from each other the more we will build strong healthy relationships. This is a new season in our relationships because all of the kids are becoming more independent in their own way and trying out ways to express themselves. I too am in a new season of learning and growing when it comes to love, affection, and expression and it is a great feeling to finally go down this path with feelings of excited joy instead of an all-consuming dread or fear.

I still have those fears and anxiety, but Daniel gave me a boost of encouragement this morning and he reminded me to be myself and speak out my boundaries.

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Happy Easter/Sunday!

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

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

 

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Quality Of Food Is A Privilege

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

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

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

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

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

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

Our dairy is very limited. 

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

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

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

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

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

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

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

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

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

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

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

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

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

The coconut oil did not cure me.

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

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

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

I am frugal.

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

How can we change this?

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

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

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

Other reads:

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