Friday, January 9, 2015

Part Two- Autism in Dire Straits

After hitting publish on my last post I mentally huddled down expecting the worst. I just knew I'd get a lot of crap for what I said, and my anxious, always catastrophisizing brain already jumped to the worst conclusion as if it had already happened. I don't even quite know what would make me post an entry that I was so sure was going to get back vitriol from the community I wrote it about, and to. I guess it is my autistic honest way of thinking. I feel like I post about when things are good, and bad. I post about what I did wrong, and what I did right, and what I am trying now. It's important to me that others get something from reading my blog. It's important to me that my experiences serve others in either lessons of what to do, not to do, or as a place to feel not alone. None of this is to vent.

What happened was not what I expected at all.

Likes were lost on my FB blog page. That is true. Some of my blogging group friends that always share my blog did not. Their lack of participation did not escape my attention. However, likes were gained. Comments were left, and discussions were had. Maybe, I could have had more if I'd left the comments open on the other post, but for the first time ever I didn't feel like I could necessarily handle all of what might be left there, so I took that option away for that post. Every comment that I have received has been positive, and supportive from everywhere else, though. For that I am more grateful than you know. I couldn't hardly believe all the comments of "me too!" that I read.

Which leads me to my first order of business for this entry.


When I was sitting here thinking that people with mild autism don't experience some of the same issues as my Beans I was wrong. Flat out wrong. I made an assumption about other's experiences on the spectrum that was not accurate. So many of you said that you experienced so much of the same things with your very verbal, and mildly autistic children/teens. I have to say that I didn't expect that feedback, either, but I am glad that I got it, because I learned a lot from it. I really had to take in a lot of new info the last past few days that drastically changed the way I view things. That's a good thing.

The way I problem solve a lot of the time is by writing. When I write things out it's like I get a fresh perspective on the situation. I think that this can sometimes come off as rude to others when I post something asking for input, and then decide at the very end to go with my own just thought of ideas. It's not that I just wanted to ask for other's opinions just so that I could ignore them, and then go for my own ideas that I had all along anyway. I didn't have those ideas until I wrote out the conundrum, and then the problem solving wheels started turning.I really don't know why it works that way, but it does, usually.

I realized a lot of things after I posted my situation, and discussed it with friends.

One of them that really stuck out right away is that there is not anywhere near enough support for people with autism, and mental health issues. Getting my son to a doctor, or dentist every year is getting harder. The bigger he gets the harder it is for me to maneuver him to do things that he doesn't want to do. There is no way for me to explain, or reason with him that he needs this, or that. Yet, when I try to explain to doctors, and medical professionals that my son has a hard time in elevators, or getting medical examinations without being restrained they act as if that is not their problem. If he is needing that much support for basic needs he needs to be in a facility that can handle him is their school of thought. No. Just no. My husband made a comment that that would be like denying wheelchair users access to a medical facility that only had stairs. It's their civil right to have access to public facilities. Yet, if someone that has anxiety, or some other disability that precludes them from safely leaving the house they're just out of luck. No alternatives are given , or even thought of as needed. Just the one that removes the person from society. I know group homes is not really like a jail, or anything, but it isn't living independently, either. The issue that I am running into is that people with certain disabilities very well could live at home given the proper supports, but aren't given those supports, so they can't. I am doing everything in my power to make this possible for my son. I am running into so many walls, but I am pushing forward until I find something somewhere that help us. I am nothing if not persistent. My son (and others like him) deserve to be treated like anyone else. I fear how many out there have unresolved medical issues due to not getting check ups. My guess is the number is higher than I'd like to think about.

The other thing that Beans is miserable. When my son is acting out I know it is because he is suffering. That is why you will never ever see compliance as a goal that I have for him. His way of expressing pain, and mental anguish is by being difficult. He has no other way to express his negative emotions. So, when I see a him doing every opposite thing I ask, refusing to transition to the simplest of things, not wanting to go into restaurants, and stores, obsessively checking, and requesting, hitting self, and others, and doing angry stimming all day I know he is doing this because he is expressing that he is off kilter. He is unhappy, or in pain. After doing full check ups (that I had to insist be done btw) and determining nothing big is happening with his health I know that it is time to try meds. No one deserves to be in such a frustrated, anxious state all day long not hardly enjoying anything. It is just so sad to me that even his most favorite activities are no longer enjoyable to him.

Another thing I noticed is that Beans has gained some language, and communication. He now shakes his head no, when he doesn't want something, which last month was never a thing that happened. He also has said some words. Mostly the phrase "my dada" when his dad is around, and "mommmm". He says them all the time. There are a few others that he has said, but not daily. Sometimes when someone on the spectrum gains new skills other skills fall away temporarily. I hate to call it a regression, because I am not sure I am on board with the meaning most people assign to it, so I will just call it juggling skills. He lost quite a few, and gained some. It will likely even out, but in the meantime I feel like I have to find him some meds to help him feel better, because he has been slowly getting to be this way off, and on for a few months now. It's just now reaching a limit to where it's like this almost all the time now.

I feel like his needs aren't understood by most. I feel like my failure to treat his acting out as noncompliance is a black mark against me. Typically when a child is pushing back as hard as Beans is most people's reactions is to stand their ground harder to show the child he is not the boss. I know that is the worst thing to do. I give him more leeway, because I read his behaviors as something else entirely, and not within his control. Being a homeschool mom who lets her child decide on his limits is not the norm. I do have an appointment with a med management nurse at our developmental pediatrician's office that I am really not looking forward to, because I don't think my atypical ways of parenting is going to be viewed well. I respect my son's space to decide what he is comfortable for him, and if he is displaying stressful behavior then the last thing I would want to do is put more pressure on him by sending him to school ect.. where he will be met with demands, and sensory overwhelm. That is not how most would see it. I am hoping that I am wrong, and that my decision to homeschool him at this time will be respected. 

If you're still with me I thank you for reading.

Here are some further links that relate to this entry:

The necesseity of medical tests for any behavioral changes in a nonverbal person 

Autistic Inertia 




6 comments:

  1. Thank you so much for this, and for your previous post. I am not so severely impacted by autism as your child Beans (of course, I am also an adult now). But I am lot closer to that than I am to how most people think I am.

    I really appreciate reading about the way you parent him. I can't change how my parents handled me, but it helps to know there are parents out there trying as hard as you are for kids like I used to be.

    When I can't type, it is the most terrifying experience for me because my other forms of communication are not accepted by the people around me. I hope for some day to have people around me who can see me as you see Beans, instead of ... I'm sure you know how most people see that. I'd rather not put it into words.

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    1. I hope that for you, and all autistic people out there, too. It's the reason I write, other than I like to write. I hope to lend a different perspective to parents, and professional that read my words.

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  4. It's great that you received such support! I commentated above but felt maybe I over shared too much or my have accidentally insulted so I deleted them...but there is one part I felt I could comment on: for medical appointments, I have been known to tell a few nurses off...some I sense disclosing would be worse for him, so we get him through with lots of promises of lego, but other medical personal I sense pre disclosure would help but I often do not mention Autism because it is so misunderstood. I start out with, "He is actually in therapy for anxiety and sensory needs (even if he isn't at the time) and his therapist believes that we need to explain each step to him of this process and remain calm and patient." If they receive that well and he really melts down I may or may not go into the Autism explanation part...but I find that most nurses are REALLY ignorant and seem to respect it more if they think it is coming from some professional. After awhile I just started working their mentalities guilt free because boy do they work me! And with anyone who tries to help our family- I make sure to only give out info that they can not use against us unless I really trust them...and try to use it to my advantage because I get so sick of being promised help and then them actually making my life worse! So I hear you:)
    Wishing you the best!

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    1. I really enjoyed reading your comments, and definitely didn't think that you over-shared, or was insulting. I'm sorry if my lag in replying implied that I didn't like what you said. I sometimes take awhile to reply, especially if someone leaves a comment that I want to address with a more in depth response than "Thanks for reading."

      I think you touch on the disability issue of autism that is so misunderstood, and totally invisible in many on the spectrum. With you son it seems like his needs are overlooked because he assumed to be "typical", so people don't understand his complex needs, whereas my son's disability seems to obvious to others that it overshadows his personhood in a way that seems so wrong to me.

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