The other day at the library, I picked up a few videos in hopes of helping the kids and myself learn how to communicate about Autism. I was also seeking better ways of dealing with challenging sibling situations. I have tried to help the children learn how to understand Autism and themselves, but I feel that I fall short many times.
I wrote a post in January Learning About Frustrations.
It has many resources in regards to siblings and Autism. Still, we do not quite fit into the neurotypical/ (Alltistic? Neuro-seemingly-more-”normal,” than some of us, but based upon a group ideal that is technically not clearly defined, somehow culturally people know something that I do not.) Autistic sibling’s relationship here. Daniel is ASD with developmental delays and language delay. Ariel seems very much to be an Aspergers girl and Joshua seems to be an Aspergers boy with Dyslexia and possibly ADHD.
However, I do not have an official diagnosis for Ariel or Joshua.
I hope to have answers by the end of summer. Along with the resources I am using about giftedness, I have been lurking about the library halls gathering more info about ADHD. I found this yesterday, The Survival Guide for Kids with ADD or ADHD and Cory Stories: A Kid’s Book About Living with ADHD. These books were eye opening for me. It was as if someone wrote specifically about my little Joshua.
It has been hard for me to understand his challenges and reasons for his actions.
I do not have ADHD; I have intuitively understood Daniel and Ariel with many of their challenges and their gifts. For Joshua it has been a struggle. I have felt as though I am failing him, but I am at a loss as to what to do. I believe my “gut” feelings are correct and I am SO glad that I have decided to do more research about this. It gives me a moment of finally! I have some more ways to help Joshua!
As I was looking for resources about dyslexia, I came across some videos.
They looked promising so I grabbed them Understanding Brothers and Sisters on the Autism Spectrum and Understanding Brothers and Sisters with Asperger Syndrome. All three kids have an understanding that they seem different from their peers, Ariel and Joshua knows that Daniel has challenges that they do not quite understand. At times, they feel as though he does things on purpose or that he takes me away from them too much. (Daniel feels that everyone does things on purpose. We are working on that.) It is understandable they are only eight and six it can be confusing and frustrating for them with many things. I thought that maybe the videos could help.
The other day we sat down and watched the videos together.
At first, Daniel did not want any part of watching the videos. Ariel and Joshua were very interested. They truly want to understand Daniel, but there is another component and that is they want to understand themselves. I did not realize how much they felt different until after we watched the videos. There are many times when they point out that they have similar struggles as Daniel and do not understand why he is getting therapy and/or help, but they are not. Ariel voices this much more than Joshua does. Joshua shutdowns, he stops talking or erupts with an emotional outburst that seems out of nowhere. However, I can normally discover the reason because most of the time it stems from him feeling things are not fair.
He gets extremely frustrated when he feels there is an injustice.
If he does not understand why one person gets something and he does not he gets upset. It can take a while to figure out because even he is not sure why he feels this at times. He just does. I wondered if other siblings felt such things. I wondered what other siblings felt. I had hoped that the videos would shed some light on this. I was still skeptical because I was not sure what direction they would take. Would they be sympathetic solely toward the siblings and parents who are not Autistic? Would they be over sympathetic toward the Autistics? Would they speak in negative language, using words such as; not normal, disabled, or lacking empathy?
I was on guard and ready to turn it off it gave any sort of negative feel.
The videos have four segments. Each segment is for a specific age range leading to the last one for parents. I played the first one for age’s four to seven; Daniel came over and sat down next to me. They were using puppets so it caught his attention. I thought it seemed positive and the kids liked it so we moved on the next segment after that one be over. It was during this segment that Daniel had a huge smile on his face and asked, “Am I Autism? Is that me?” He was so happy and seemed to feel good about it when he was asking. I said, “Yes, Daniel you are Autistic.” He smiled again and rested his head on my shoulder.
It was going well.
The kids had some questions and we discussed the things that were true for our family. Then, there was one little girl who said some things that I felt was a bit negative, but it was how she felt. She said something like I was worried about my brother because his brain was not normal and I wanted him to be like the other kids. That is not word for word, but that was the jest. I stopped the video and talked to the kids about how there is not truly a “normal” that exists. I explained that every person processes differently and that we do not feel that Autism is something that is “wrong.” I also, shared with them that some people do feel that way and that it can be hard to understand Autism.
They seemed all right with my explanation.
Frankly, I do the best I can and hope for it to be a positive. I do not have all the answers, but I want to raise my kids to try to understand different views even if we do not agree. I noticed a change in Daniel after he watched that little girl though. The video then transitioned into talking about meltdowns from the sibling’s perspective. Daniel started to interrupt and get loud. He started making loud stimming noises, pushing on me, and standing in front of the TV. I asked him if he was upset that they were talking about meltdowns. He said, “I don’t like that.” I asked him why, but he could not explain it.
I felt the video was positive in explaining that the best way to handle meltdowns is to be patient.
(Sometimes easier said than done, my own included.) They focused on trying to understand how difficult it can be for their Autistic sibling. I did like the fact that they allowed the non-autistic child have their perspective as well as share how they handled it and what they felt. I am sure there are those who may not agree, but what I got from the overall message is that they were focusing on being positive and accepting. In the Aspergers video, they pretty much did the same thing, but they did change it a little. I enjoyed watching the siblings share about their Autistic brother or sister. They gave balanced information speaking of the challenges and about what is special about their Autistic sibling. They shared their positive qualities too.
Daniel did not want to watch the videos anymore after they talked about meltdowns.
However, he did come back and watched the Aspergers one while the siblings were talking. He was happy when they shared their stories, pictures together, and experiences. At the end of the video, we discovered that the person talking throughout the video is the sister of an Aspergers brother. As we watched the video, the kids pointed out things that they do too pertaining to both the Autistic characteristics and the emotions of the siblings. It gave us an opportunity to talk and share our feelings – it was mostly Joshua doing the sharing. He kept saying, “Hey, that is me! I do that that! “Especially, during the Aspergers video.
Ariel stayed pretty quiet.
I could tell she was processing, but I was not sure what she was processing. I did not find out until the next day. She and I were cleaning the yard together and all the sudden she said, “Mom, you know I believe that I am Aspergers. When I watched that video, I understood a lot about myself. I have a hard time understanding people; I get confused by social interactions.”
We talked more and then, I asked her if she would like an official diagnosis.
She asked me what that was and I explained it to her. This is what she said, “Yes, I would. I want to know if I am truly am Apsergers. I would like to know if my struggles are just a kid thing or if it is Autism.” I asked, “Why, because you want to know if you deal with some of this for the rest of your life or not?” She said, “Yes, I would like to understand me and how I think.” I felt like she was a forty-year-old peer during our conversation.
Ironically, she said almost verbatim what I said to my mom in a conversation we had, alone.
I digress. The main point that was conveyed was that I still have not explained Autism to them in a way they understand. I find it difficult. Since all of them show signs and traits of being on the spectrum, the explanations get complicated. I have found no curriculum or websites that give information to help and Autistic child learn about themselves or their sibling that is on the spectrum too only with challenges or gifting that are different.
I am still learning about myself as an adult Autistic – a female Autistic.
The information that I have found is helpful, but it is geared toward those who are not Autistic. It is rather black-n-white, we-and-them type of explanations. I cannot seem to find a way to help them understand each other or themselves. How do I answer questions like:
Why does Daniel get social skills class, when I don’t know how to make friend either?
Why does Daniel get OT sessions when I have a hard time with writing?
Why can’t I be evaluated too I do not know how to talk to my peers?
These are some questions that Ariel has asked me.
She started with even more after she discovered that Joshua is going to be evaluated and is supposed to get accommodations next year. I understand much better now after she and I had that conversation about Aspergers. Joshua has had his own set of questions, but his are more about how Daniel expresses his emotions. He wants to know why Daniel is allowed to behave a certain way, but he is not. Sometimes I do not have the answers, sometimes I have to be honest with him and tell him that I am just do not know what else to do, other times I am able to explain without any issues.
I have searched for support groups in the area.
I have made contact with several people and there is nothing happening. Several of the meetings have been cancelled or their focus has been on fund-raising for their Autism cause. Which from what I observed on their facebook pages is with Autism Speaks and other groups that focus on a perspective of Autism that I am not comfortable with for my family. I am still open to meeting them and giving it a try when/if they ever meet. I have tried the local hospital that is supposed to have several support groups for families and they are not doing anything either. I find this very frustrating. I want to help all three of my kids, but all the avenues I try to seem to hit dead ends.
Possibly, I should take this as a sign.
I thought about Daniel’s question some more, ”Am I Autism?” It was easy to answer him. His signs are clear; his challenges are visible to anyone who tries to talk to him in the first few minutes of being with him. Yet, he can still pass as “normal” because he looks like a “regular” little boy by sight. Ariel and Joshua can “pass” more so, until they get home and the stress of social confusion, feeling awkward, or wanting to play with their peers, but not knowing how.
In Ariel’s case, she loses her words completely.
She explained to me that it is like her words are stuck in her throat and she cannot talk no matter how much she tries. HELLO! I know that feeling. The same goes for sensory issues, they will be fine out in public for the most part, but when they get home, Ariel will lose it if the boys get into her space or talk to her, or Joshua will cover his ears and yell about someone chewing gum too loud.
Those are only a couple of things.
I think this is one of my loops. I become nervous and scared that I am not doing enough for all of my kids. I get concerned that Ariel and Joshua are going to feel that they did not get enough attention or their emotional needs met. I see that they have struggles, but I am not sure how to help or I forget because my focus goes onto helping Daniel. I get freaked out on how or what to tell Daniel about being Autistic.
I do the same for Joshua and Ariel.
I want them to see themselves with a positive self-image, but it seems that the only way to get them help is to focus on their challenges! Urg! This is all a process of learning. I now need to shift my thinking. I am doing my part, we are going to have to work out the funds issue, but we need to get Joshua and Ariel evaluated. Ariel and Joshua tend to look as though they are not really struggling, it can seem like they are refusing to do what they are told or they are acting out. However, the more that I spoke with them after the videos I realized that my mind continues to lose sight of how much they do have similarities as Daniel mixed in with their personal challenges. I am going to read, research, and apply positive ways of talking about Autism and about being Autistic. Daniel’s response to my answer that he is Autism, made me smile. I was happy that he saw it as a positive.
I want my kids and myself to learn what being Autistic means to us and learn to appreciate both our talents and our challenges.
Additional resources:
Siblings (Autism Society)
Sibling Perspectives: G u i d e l i n e s f o r Pa r e n t s
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Ariel passed her swim test a couple of weeks ago. I let her go into the pool without me for about five minutes.
Kind of like the scene in 
