Tuesday, June 30, 2015

Self Care Means...

Even in my 30s, I'm still learning what self care means for me.

One thing I've always known is that I need alone time. It is hard to get with kids and stuff, so mostly (right now) I'm getting alone time after bedtime. That isn't really working well though. So I am trying to be in transition to do some things differently. Especially since there is this other baby on the way. If there are going to be 3 kids in this house, and only one mama, I'm going to definitely prioritize some self care. How, I wonder.

Self care also means knowing when you've had enough, before you've had enough. It means literally unplugging life. Like when you put your computer on 'sleep' mode, just run your operating system in the background, and shut down all unnecessary functioning. It might vary as to what means "unnecessary" to you, but for me definitely socializing is OUT. I cannot socialize, even with my own family, when I've reached meltdown mode. It becomes movie time for the kids.

 And believe me, I reach meltdown mode. I might be an adult, and I might not be collapsing onto the floor, but I still have meltdowns. My brain literally just can't take any more and it starts shutting down on it's own like a nuclear reactor. I even feel myself needing to be mute. And we wonder why our ASD kids don't talk to us? We scratch our heads over selective mutism? I know why; the brain just can't handle it. The brain has reached maximum output ability, and that's it. No more.

I feel like that's what has happened to kids with autism who don't speak. Whether it is a drug, medicine, or something else, they are living in meltdown mode, and their own body is holding them to basic functions. And, kids reach meltdown mode a lot faster than adults do because they just don't have the life practice to help themselves. And if the cause is out of their control or understanding, what are they supposed to do?

 And realizing how fast and easy I reach meltdown mode, I feel horrible for ever assuming my kid should be able to do or handle something, when I am realizing that he just can't. Because I'm realizing that I just can't either. 

Self care means shutting off the phone, shutting off all forms of communication, verbal or nonverbal (text/online). Because you will still overwhelm yourself, even if the interaction is only in words. And you will be less able to accurately determine intent in the words, and likely will misinterpret things too. 

We have to help ourselves understand that if we do not take the time to recover, we will likely end up in "debt". Remember, only basic functioning will be running, so it will be pretty tough to do anything anyway. You can either take a break, or put your eggs in the garbage and the shells in the batter. You can either realize you need to step back and remove yourself from social life, or end up borrowing from tomorrow's "spoons", to use a popular special needs theory. Then tomorrow you will be no better than you are today, and you will repeat the process until you get the self care you need to recover properly.

I'm still learning how to do this. I think in this day and age when everyone has cell phones, we feel like we might miss something critical if we don't have our phones on. While it's possible that, something bad will happen if you take a break from your phone, but if you haven't taken theat break, you would be even less able to deal with it than before you took the break. 

The only thing I wish for is longer breaks. And the ability to cancel the entire day to recover. But life doesn't stop sometimes. Sometimes you have to keep on keeping on. That is the most exhausting thing ever. But there may be some things you can do to maintain until you can get more self care time.

Don't forget healthy food or a good walk in quiet peaceful nature, if you can find it.

Finally, sleep. Any catnap can help you recover. It might be really hard to get a nap with kids, but never underestimate the power of 'mom ears'. I might be "deaf" (you'd have to ask my family), but for some reason I always hear what trouble is happening when I catnap. 

Anyway, I keep learning more and more about myself, and without ASD, I wouldn't really know what to do with me.

Thursday, June 25, 2015

Planning, Children, Unexpected

Really looking for other autistic's input for this one!

So, my whole life I knew exactly what I wanted. And I wanted it perfectly and in perfect order: First I wanted a boy, then a yonuger girl.

Having my first, a boy, was a dream come true. But adjusting to being a mom, though a true joy and dream come true, was difficult. He was intense, tongue tied (I only found that out a couple of years ago), and very fussy (due to the tongue tie, he couldn't nurse without getting tons of air, so he was always full of air. And he nursed A LOT.). Pair that with the autism and he was a fairly high maintenance kid! We weren't sure we would have another, and we knew we had no desire to have another one soon, so we waited.

Eventually, the baby fever returned, thanks to a cousin at a family reunion (and the desire to have my perfect picture with the little girl!). So we started trying and after much difficult months and work we finally had my completed dream come true: a little girl.

So we were done! I had exactly what I had always dreamed of, one of each, boy first. It was as if God literally knew how happy it would make me to have exactly my dream, and He sure blessed me fully and perfectly with that. We were content, and we were done. Autism does not get easier as the kid grows up, but the challenges move from one kind to another. So we were done.

Except that we aren't.
All the cliche things. God has different plans. Wonder baby. We had been saying we were done, and if God had different plans He would have to pull the strings. Even joking about having another one to stop the insane hives I have been having on and off (but mostly on) for the past year+. 

So we are having another one. And I am anxious. Not in a "can't wait to meet the baby" way, but in a "can't wait until the baby is like 6+ months old and things calm down and settle in" way. I don't really particularly love those first months. I love infants, I do. I love their smell, I love their need to cuddle, their inability to move around a lot so they are "safe", babywearing. But I don't like the adjustment period. I don't like that feeling of exhaustion, and the hormonal fluxuations, and the life altering entrance of another person into your home.

We only have 4 chairs, and they fit perfectly around our circular table. 4 people can easily fit into a small sized car (which we someday planned on getting back into again, but, its a van from now on until forever HAHA). We had even numbers. 

All these things are totally unimportant. Seeing that little blob today revealed perhaps a part of this little one's nature: he/she was nestled so closely to the edge that it hardly seemed possible that it was a separate creature. It was interesting to see so snuggled closely to my body. I don't remember the other two looking like that when we first saw them. 

I know that this child will fit into our family and we will wonder how we ever managed without them in it. But for now, I'm left kinda panicky at times, because we had no planned on this. We didn't keep ANYTHING. My sister isn't ready to part with hers yet, so I get to borrow, but I was just looking forward to some freedom. Little B girl has slowed down with nursing and actually can make it most of the night sleeping through. I was just able to leave her and start working a little. I was looking forward to not having to wear a nursing tank anymore :P I've lived in those things for the better part of 2 1/2 years and I was looking forward to a bra again. (Nursing bras are, strangely, ACUTELY uncomfortable, especially when they are made for a time when womens' breasts are likely more sensitive than normal.)

But here we go again. It always works out, so the details I'm not really concerned with. It's just that period of adjustment. Living so rural, with very few friends to support me (and especially having people not understand that what I really want is for them to actually do something that I feel is helpful, like meals and dishes, not watch the baby!) it can be lonely. I'm glad that you see the doctor so often in the beginning because I fully trust her to take care of me and keep an eye on me, and using my past history, I think I know how to at least keep my health up while recovering. And I'm going to INSIST on a tongue tie being cut RIGHT AWAY so that we can hopefully curb jaundice risks and increase breastfeeding success and comfort. That will make things SO much easier.

But I still worry about my overly strong obsession with keeping all my balls in the air. 

I think that the purpose of this baby may just be to help me decide which balls are important, and which balls are not important. I was still of the mindset of "why did my mom always have a mess in the kitchen", but maybe I need to allow us to have a mess in the kitchen. Maybe the surfaces have to be sticky, and my sensory aversion to sticky needs some reduction (kinda like my sensory reduction to bug bites must have been reduced due to the year+ hives...). Maybe I need to let go more. 

No, not maybe, I DO NEED to let go more.

I tend to hold myself to a high standard of perfectionism, and it just makes me feel good to have a clean house, a clean kitchen, and the relief that everything is in its place. I love organization and I'm constantly trying to better my organization all over the house too, so having to have more things again for a baby in the house (in the "way), is really overwhelming. I rejoice when the baby furniture leaves the house! But now I'm considering a stand alone high chair, because of the "only 4 chairs" thing. Yet one more furniture.

I like to plan ahead for things, and my mind is like a rat on a spinning wheel, just trying to plan for where, how, what, its all going to look and feel like. I know I'm going to love it and I'm going to laugh because God knows what He is doing, and that makes me happy. 

But that doesn't erase my aspie obsessions and aspie control and aspie overwhelm.

So, Aspie moms and dads: what was YOUR dream for when you were going to have kids? Did you have any preferences? Did you know when you had to stop? Did you feel like you couldn't handle more, and then got a surprise? I would love to hear your stories, especially if the beginning is like mine, and the ending helps me see a light at the end of the tunnel, at least from your experience and perspective. 

Sunday, June 21, 2015

Denial & Personal Thoughts - Autism Acceptance

Speaking from personal experience, I think denial can be a very dangerous thing. 

I think it's dangerous to deny someone their specific set of skills or weaknesses, especially if that set of skills and weaknesses mean they have a brain difference like autism. 

I know, I know, people are afraid of the labels. They are afraid of the judgement from other people or kids toward their child for being different. 

Think about it for a minute though, labelled or not, they are going to be different anyway, and they are going to be teased or excluded because they are different anyway. The label would serve as a proper way to deal with other people's judgement because you can explain and educate. 

As I've said before, I think people have enough "awareness" of autism. "Autism Awareness" is a very ridiculous thing because people ARE aware. However, they do not understand or receive proper information on autism. They are given the "horror stories" and the "disabilities" and the bad side in huge measure, told by people who DO NOT have autism. They are told or hear how bad autism is, how it's a horrible disease like polio or AIDS or cancer or something (it's not). They are told how parents suffer and worry their whole lives about their autistic children, if they will ever fit in with society and what will happen to them when they are gone. It is a whole big pot of "here, fear autism" that comes with the "Autism Awareness" campaigns. 

What we need is "Autism Acceptance". With autism acceptance comes knowledge and understanding. Real people WITH autism get a chance to speak and tell people what autism means to them, what it is actually like to live with autism, how their lives still have value and meaning and purpose even though we are different from the rest of you.

Anyway, with this fear, comes a strong denial of autism all together. No one "wants" their child to have autism, because its scary, because its supposedly a negative label, because they're afraid. They're afraid it will hold their child back, they're afraid it will cause more people to be judgmental about their child, that they will judge their parenting, and they will think that the child is stupid, or won't ever be able to function in society.

So even though a child has all kinds of super clear signs of autism, you get a family who completely rejects the idea of autism because they are so afraid of the diagnosis. They don't want their kid to be different. They don't want their kid to struggle. They want something for their child that the child will never attain, whether that's popularity, or social acceptance, or whatever.

EVEN JESUS was rejected, by his own people. What is this obsession with popularity and fitting in anyway? Why do we want our kids to fit in, and be like other kids? Don't we want our kids to be who THEY are, not who their friends are or make them to be? I digress...

When you reject the possibility of your child having autism, you reject who they are, and how their brain works. You do them a disservice because you give them no proper understanding of who they REALLY are, how they are really built. You forget these brains are created this way for a purpose. Yes, its weird. Yes, it is inconvenient. So what? Are they a little monster, or your child?

Sure, you accept them for their quirks and you work with that in different ways. Some parents will protect their kid, and allow them the control and space over their issues, anxieties and fears. However, some parents do not, and end up forcing their child through these anxieties and fears, making them bigger, not giving them the confidence that they are safe until they are able to move through that issue in their own way at their level of comfort. Obviously we don't need our kids to be terrified or anxious about things all the time, but I don't think (from personal experience) that telling them their fears are stupid, and forcing them more trauma by scaring them will help them "get over it". It actually makes the fear bigger, not smaller.

I think, especially when talking about an autistic child, this does a great harm to them. They already have a hard enough time dealing with the world, and now the people who should protect them the most give them the idea that their feelings, fears and anxieties are wrong, that they are wrong, they are broken, and they are forced to endure anxieties and stresses that they just aren't yet equipped to handle. You force them into a position where they constantly have this impression that this uncontrollable thing about them is bad, so they must be bad, and many kids act bad because they feel bad. 

What everyone needs to start understanding is that most autistic adults do not want to be "cured", and cannot imagine their life any other way. We like ourselves, for the most part. Again though, if you grow up in a very negative environment that is always telling you how broken, wrong and bad you are, things are very different. You already struggle to figure out the world, to fit in somewhere yourself, and your very own family is also telling you one way or another that you don't fit in with them either. It is easy to see how some kids can be lead into thinking that they would be better off if they were never born, or worse, that they would be better off dead.

I'm not suggesting that parenting always or definitely leads to suicide. There is a whole bunch of other factors that lead to that. But really, telling your child how broken they are all the time is not good for either them or you. Is that really what you want for your child? 

I say better to be safe than sorry. It is better to know, than to deny and reject. It is better to say that there is a set of symptoms presenting, and that it's worth looking into than to just think that things will get better if you just force them to do things they don't want to do, or if you keep telling them that they are okay (when they are clearly not!), or whatever. 

KNOWING is the cure. Knowing what you're dealing with, knowing how your child's brain works, knowing that they are going to have a set of strengths and weaknesses, for their whole life, is what helps you to move forward with more confidence as a parent or caregiver. Knowing that your child will have issues socializing gives you a place to start showing them how. Not knowing means that you just expect them to know, and if they don't, that is very discouraging to the child, and to you as they continue to disappoint you.

There were little things I remember that I wish my parents had known. Like the fact that my system was totally overwhelmed by yelling and that was what caused me to freeze up and be unable to answer when they yelled. If they had understood that then they wouldn't have reacted so much more angry when I was suddenly "refusing" to answer them. If they had understood that I would NEVER be "socially" skilled, maybe they would have let me go ahead a class, as was recommended when I was in elementary. If they had known, things might have been different. Instead of just being confused about my behavior, there would have been a reason.

Instead of my sister being put in the position of "what is wrong with your sister", she would have been able to say "that's just the way her brain works/just the way she is" or something. Instead of feeling so frustrated with me, maybe she would have been more equipped to help me, or at the least, not hurt me. She survived (it seems) by trying to distance herself so far from me so that she was accepted even though I wasn't. Those events have shaped our relationship as adults, and from my perspective anyway, it is not what I would expect or have pictured for a relationship. It is pleasant at times, definitly better than it has been. But it is still uncomfortable at times.

So many things might have been easier and different if we had known. So, I'm telling you, even if professional diagnosis is not for you, taking a self diagnosis still is helpful in your personal or parenting journey. Even if you/your child is not autistic, I think that viewing them differently for their behaviors is a good idea. Kids are not "out to get you". They didn't come into the world to ruin your life and take all your time. But especially if they have some suspicious behaviors, it is probably wise to view them through a lens that fits them, instead of the lens you want to fit them.

I don't know if this made any sense. I was interrupted while writing this post and even though I read through it I'm not sure it is coherant.

I just fully believe that we should start viewing things differently. Stop being so afraid of autism. Start accepting that yes, people have autism, more will have autism, might even be your kid. But it also might be that eccentric neighbor who is not and will not be diagnosed. Someone you work with who can be difficult? Maybe they do too. Even in the 90s when I was in school, no one even brought up autism as any explanation for anyone's behavior. So diagnosis are actually a new thing, something that is becoming more common because we have learned a little about what it is. But there is still a long way to go to fully understanding what it REALLY is, instead of being something to fear, it is something that makes the world a colorful, unique, diverse place. :)

Thursday, June 11, 2015

Taking Mental Health Seriously

I feel as if I've had a lot of anxiety problems in my life, though I don't often consider them a real problem, to be honest. I just kinda float through and manage to carry on despite the anxieties. 

I remember often when I was a kid that I would get this icky sinking feeling in my stomach. From what I can remember, it would last every day from about November to March. If I was in school, that was good because I could distract myself. If I had my head in a good book, I could distract myself long enough to get my mind off my nagging stomach. If we could just do something to distract myself, usually involving not being home, things looked better! Thank goodness our grandparents literally lived right behind us and I could get a bit of change of scenery going there. And grandma loved to go out for coffee. A lot.

That icky feeling has not been around much since I was in high school. There have been moments where it has returned, and they are dreadful moments. But somehow I've managed to be able to take deep breaths, change my surroundings, or simply distract them away via technology. 

If someone tells you they are hurting, or suffering from some kind of nagging anxious feelings, take them seriously. I think sometimes we try to tell people they are fine, by our estimations, and that their feelings don't have anything to do with reality. This is probably the most true with anxiety disorders, because to an outside source, the feelings do seem illogical and don't seem to have a lot of basis in reality. So we brush them off and tell them that they aren't as bad as they seem.

We have to take it seriously. Yes, it's time consuming and inconvenient to have to start calling around for information and making appointments, but isn't the life of your loved one worth it? 

Sure, these days, especially for kids in school, they have all that IEP stuff and extra help in school. But what about for other things? What about feelings of anger, or frustration, or fears? What about crippling anxiety that keeps you up at night unable to just relax and go to sleep? And how do you tell your parents any of this when you can't make sense of it yourself? 

Just take them seriously. Give them support if they need it, direction if they need it, and help to show them how they can work through their feelings in a safe way, through the help of a counselor or whatever.

Wednesday, June 10, 2015

If You Want To Make God Laugh.... A Word on Change and Shock in ASD

Tell Him your plans.

That's right. Make plans, be confident and sure of them, and wait.

Change is not something that ASDs have an easy time with. In fact, the more we can plan ahead, and prepare for things, the better. No surprise parties (though no one has ever thrown me one, I'm fairly certain I wouldn't like it because I would never be prepared for that much social activity).

Anyway, be gentle with your ASD when it comes to change. It doesn't matter if the change is the food you're serving for lunch (been there with my son!), or a change in plans (like going to go somewhere and then not having the money - again, been there!) Give them some time.

Don't be quick to congratulate for something when they are still trying to recover from the shock of change. ASDs can be surprisingly stubborn, irrational, even mean and panicky when they're still recovering from a shock. Please be gentle on your loved one or friend. Let them pour out their feelings of overwhelm and fear and pain and frustration and guilt.

I know through experience that all this happens. Sometimes it lasts 5 minutes. Sometimes it lasts for days. Point is that you have to give them space if they want, or the ear they need to just listen, or the shoulder they need to just cry on. Give them some time.

Do not mistake their smiling for happiness, sometimes ASD means poor emotional facial expressions. (Great, it's already hard for us to tell when you're kidding, but now I'm telling you its hard to tell when we are too?)
 I can't tell you the number of times something happened and I ended up stuck smiling, leaving the person thinking I'm joking or not serious. It's hard to defend yourself when you're smiling like its all a big joke, even though you know it's not, and don't even feel that it is, but your face deceives you.

Above all, follow their cue. Don't try to tell them that they are being ridiculous. Don't try to tell them that they don't make sense. Don't brush off their feelings, because they are real, and deep! Just bear with them, it is likely it will pass, but the way you made them feel won't.

Saturday, June 6, 2015

Another Thought On Parenting/Caregiving

Read this recent post by the Autism Discussion Page:

Over the next few days we will focus on fostering empowerment in your children.
Does your child understand his autism? Self awareness equals empowerment!
It is very important that children on the spectrum learn to understand what autism or asperger's are, and how it effects them; both strengths and challenges. It is important that they learn how they are different from others, not only in terms of how they experience the world, but also how we experience the world. Life will always be a struggle for them, since the world is based on how we process information, and does not match how they experience the world. Learning about their differences from us allows them to better adapt and advocate for themselves.
For most people on the spectrum, daily living is a constant struggle, since they are always trying to navigate a world that is not a good match for them. This struggle can be handled more effectively if the person begins to understand how their differences impact these challenges. Learning about their differences is twofold. First they have to understand how they process information, and second, they have to understand how we process information, so they can understand the differences. This allows them to understand why the world is often confusing, and allows them to better adapt to it. From this awareness they can learn to maximize their strengths and compensate for their differences.
I usually break these differences down into sensory, cognitive, social, and emotional differences. Once people on the spectrum begin to understand how we are different, their challenges start making sense to them. From there they can make accommodations to minimize the daily challenges they face, develop coping strategies to face stressors they cannot avoid, and learn to regulate their nervous system so they do not get overwhelmed. They can identify what physical, social, and emotional challenges tax their nervous systems so they can build in accommodations to avoid and/or modify these conditions to lessen the negative effect. They can learn how to adapt to the work setting, navigate around social issues, independently follow their daily routine, and build a home environment that allows them to escape the confusing world, regroup, and rebound for the next day. The person can do an "autopsy" of each daily setting/events (work, school, family, recreation, etc.) to identify possible challenges/stressors, and then build in modifications, adaptations, and accommodations to minimize these challenges and maximize their independence and emotional well being. They learn how many of their strengths can be used to maximize their success, and how to build on their preferences to improve quality of life. So, as early as possible, but definitely in the teen years, try to build on the importance of the child learning about his differences and how to identify and design strategies for maximizing his ability to adapt to the settings he is in.
It is very important that we focus on "strength based" parenting and teaching. Once the person learns what his sensory, processing, emotional, and social needs are, he has to embrace these needs and find ways to support and protect these needs; learning how to modify, accommodate, and adapt his environment and daily routine to meet these needs. It is important that the person doesn't feel the need to "fix" or "change" what his needs are, but to use his strengths to better meet those needs.
At what age should you start? The earlier the better! My experience is usually around eight or nine, if they seem to notice differences. You want to catch them as they are first noticing differences, before they start setting up defenses that are hard to break down. Often by the time the children are 13, if this hasn't been discussed they, they have built in defense mechanisms that deny and refuse to recognize it. Focus on discussing all aspects of the child, strengths and weaknesses, interests and personality traits, with autism just being one small area of it. In reality, it is good to have this type of discussion with all kids. We all need to be able to have strong self awareness, know what our strengths and weaknesses are, and how to develop our strengths to help support any weaknesses.
This series on “empowerment” can be found in the green book, “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.”

**Disclaimer: this is not meant to make anyone feel badly. These are just the thoughts that I have running through my head taking into account my personal experience, and the experience parenting my son with our newfound knowledge of our Aspergers. Thank you.

As I have grown into my diagnosis over the past 3 years or so, I have realized something big about myself. I do not like to give myself a break. I expect perfection at everything I do. And I expect myself to be able to handle it. BUT, I CAN'T. 

The big news is that I can't do it. I have struggled over and over in my life with panicky, anxious, overwhelming moments where I lash out at everyone closest to me, because they're the safe place to do it. 

Where does this come from? Well, it has occured to me that at least part of the reason that all this happens to me is because we didn't know I had aspergers when I was a child. I suppose for the most part then, it was as if I was just being a difficult child. If I freaked out because we were planning on doing something, and plans got cancelled, I was punished for my bad behavior. Eventually I learned to just ignore my frustrations, bury them, until they became so overwhelming that I would get sick. Not sick like having a cold, but sick as in having depressive, anxious feelings and a strong need to withdrawl. And, to be honest, I felt like most of high school was withdrawl from everything and everyone, but especially my family. There are things we did that I barely remember. Sure, that might be normal, but you would think that big things would be memorable, but I've surprised myself at how many times they aren't. 

I could go on and on, but to make it short, my point is this: When I talk about respecting your children and their autism, and understanding their strengths and weaknesses, what I mean is that you do them a disservice if you force them to repeatedly encounter overwhelming circumstances without letting them control or even express their feelings about the situation. Plans being cancelled upsets everyone, but to a kid with autism, YES, the world IS ending, in that moment. It is heartbreaking to you to change plans, but to the kid with autism, their whole world was rotating around those plans, and now their world literally has stopped short because they were cancelled. Telling your kid that their behavior is unacceptable doesn't even register, because they are unable to logically consider anything at that point. 

LISTEN to their feelings! Repeat back to them what you are hearing them say! People might encourage toddler speak for toddlers, using short toddler sentences and matching their emotion. Maybe that would work for your autistic kid, even if they are not a toddler. (Probably doesnt work on older kids/teens though.)
Let them tell you what their needs are in that moment. Don't send them to their room and tell them to knock it off because you don't want to hear their feelings. That is an insinuation that they should stuff their feelings. Let those kids get those feelings OUT! 

If your kid always breaks down at the grocery store, forcing them to do it over and over will continually reinforce that they hate the grocery store, that they have no control over their input or their feelings about it, and it will tell them that they should just stuff their feelings of overwhelm. They might accomplish doing this eventually, and they might end up looking like they are dealing well with situations that previously upset them. But the truth, from my experience, is that I might look good in public, but the next day or 2 at home is very hard for me, and I have to take it easy. 

So, just think through what you are doing. Your goal might be to make your kid look normal in whatever circumstance. But what is really in their best interests? Stuffing needs and feelings is in no one's best interests. It might make someone look socially appropriate, but it comes at the cost of their personal boundaries.

I still don't feel like I said what I'm thinking very clearly, but I hope this is a part that will help understand this better.

Friday, June 5, 2015

Just One Disaster At A Time, Please

Recently I have been overly stressed. Funny thing is that I can't really remember what it was I was stressed out about last week and the week before, but I do know it was a significant stressor, and even my husband agreed it was a big deal. So my cycle was off. 

Yesterday, things started coming to a head. I was really getting cranky. And then not one, but TWO pretty unexpected major disappointments hit my day, and I literally came unglued. 

I already know that I have a harder time dealing with disappointment and plans changing than the average person. Therefore, I try to do the best I can to anticipate change or disappointment and prepare myself ahead of time. But these two things were completely out of left field, and literally came at me within the span of 5 minutes. I was literally chatting with our internet provider about our speed, when I opened a letter saying that the dorms at campmeeting were filled and that I did not have a room to stay in for the week of campmeeting. Then finding out that my internet is half the speed because they apparently can't offer me the full speed I'm supposed to be getting, and was getting 2 months ago, because "the line is full and in 'exhaust'" So two major crisis (to me) in the span of a few minutes

It has become obvious that I cannot easily handle that much crisis at once, on top of hormones especially. 

So, no, I have no idea what I can do about it. I feel a little less spazzy (about that topic) today, but I'm still completely cranky and with very little tolerance. I am so steamed about our internet that I practically can't think straight, but when it comes to having unlimited internet, I don't really have that many options, if any, besides what we have. Sometime when I calm down I have a loyalty program phone number to call and see what they can do, because paying the same rate for half the speed just does not make sense to me. This whole thing is infuriating and doesn't make any sense to me. It seems what they did is put gaining customers over the quality of service they provide, which is typical for a company. So we are researching our options, but I'm finding at this point the whole thing is a little overwhelming. It is ridiculous that a loyal customer is put back on the bottom rung after years of loyalty and support. 

It is just unfair. And if there is anything my aspie heart can't stand, its unfairness.

Anyway. So I'm in a mood, and I can't yet even function well because of it. This kind of overwhelm takes me days to get back centered. It is just life with autism. What you may get over in 5 minutes or an hour takes me days to get over.

Thursday, June 4, 2015

PTSD and Autism - from Autism Discussion Page

I'm absolutely loving the posts from Autism Discussion Page on Facebook! They are so spot on for me. The posts are long, but when I read them it amazes me how insightful they are. I'm impressed.
Here is a new one today.

PTSD and Autism
It has amazed me how long it has taken for the field to accept sensory processing dysfunctioning in autism spectrum disorder. For years, the field of psychology practically ignored the sensory issues. Applied Behavior Analysis ignored it while forcing children to obey and stay in situations that were overwhelming for them. If the children “acted out”, we made them “stick it out”; so their acting out behavior was not reinforced by escaping the unwanted situation. Over twenty years ago when I first started incorporating sensory processing strategies into my “behavior plans”, the psychologists all looked down on it because you could not observe it and measure it. Agencies would try and stop me from using the strategies because they were not “evidenced based.” Sensory processing problems were not “real.” They were in the business of “changing behavior”. Treating autism was nothing more than “changing their behavior.” The child’s internal experiences were not recognized, considered, nor valued. The ends (changing behavior) justified the means (extinction, punishment, forcing compliance.” Sensory processing issues were not “real.” Even though adults on the spectrum were writing extensively about these traumatizing experiences, the psychologists still claimed they were not real.
Sensory dysfunction in autism is being recognized now. Finally after many years of people on the spectrum speaking out and demanding to be listened to, this experience is being taken serious. However, another topic not mentioned much in autism spectrum disorder is Post Traumatic Stress Disorder. Since most PTSD is caused by extreme sexual or physical abuse, and war time emotional trauma, it is not often suspected in ASD. However, I see evidence of it, and many of the self reports of adults on the spectrum relate experiences that seem very similar to post traumatic stress. Post traumatic stress occurs when there is severe insult to the nervous system. It results in changes in both brain chemistry and suspected structural changes in the brain. The person exhibits generalized anxiety, depression and isolation, panic attacks for no apparent reason, and sometimes rages.
PTSD can come from one of more emotional traumas, or long term distress from severe sensory processing dysfunction. Many of the nonverbal people on the spectrum, who also experience severe sensory defensiveness, are often experiencing intense physical and emotional trauma from the overwhelming sensory insult to their nervous systems. Since the child never knows when the “sensory bombardment” is going to occur, it often attacks without warning, leaving the child helpless in defending against it. The constant “fight or flight”, panic reaction has long term effects on the nervous system; leaving the individuals battling stress and anxiety for many years. Each time the nervous system experiences intense sensory bombardment, the “stimulus characteristics” of the event becomes associated with the severe “panic response.” At other times in the future, when these common stimuli occur again it can produce an immediate “panic reaction” that was originally associated with the traumatic event. For these individuals, immediate panic occurs, for no apparent reason. Neither the person, nor those around him, may understand why the “panic reaction” occurs. This response can occur when a given sound, color, or smell occurs that was originally associated with the traumatic event. Our sensory memories are very intense. When your sensory experiences are very intense and inconsistent, like those experienced by people with sensory processing disorders, such overwhelming emotion can be associated with, and set off easily, by simple sensory memories.
So, when working with severely impaired individuals on the spectrum, tread very lightly. Be very respectful of their comfort zones. Be very careful of how you touch them, talk to them, and press them. Their nervous systems are very vulnerable and easily traumatized. Their reactions can be very guarded, and intense. They can be very emotionally reactive, and need you to be very calm, gentle, and compassionate. Always be looking for “defensive reactions” and immediately pull back when you see it. Never press the child into situations they are scared of. Guide them, but let them pace their actions. Let them feel “in control” so they can immediately end any situation of “panic.” Learn what touch, words, actions, and stimulation helps them feel safe and secure. Always listen and understand first, before intervening and redirecting their actions. Always assume that underlying their defensive reactions is intense emotional upheaval. Be respectful and compassionate, allow them to pull back, escape and rebound. Teach them coping skills for dealing with these intense experiences, but most importantly teach them to feel safe in your presence, and to trust following our lead.
This series on “labels, diagnoses, and co-occurring disorders” can be found in the green book, “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.”

Wednesday, June 3, 2015

Some Thoughts on Parenting, Autism or Not

I got to thinking today what it was like to grow up with undiagnosed autism, and honestly, if it would have made any difference at all if I had been diagnosed. 

I remember the complete and total brain freeze I would have when my parents would yell at me. And the intense, overwhelming anger I felt afterwards! I remember the times I smiled when I was telling the truth, which would make it seem as if I were lying, and it made me so angry that they couldn't really believe me because I smiled when I said it (or insert other inappropriate affect here). 

It got me thinking about how my parenting has been different before and after my son's diagnosis. Little things that I punished him for, that I now realize are not things he is doing on purpose, or even things that are (right now) under his control. Things that he has trouble with because he has autism, things that I have trouble dealing with because I have autism. 

Both my diagnosis and my son's has made a life changing impact on my parenting. I am a lot more understanding and respectful of my and my son's limits since being diagnosed. Looking at all the information, the full picture, has helped me greatly because I can give myself a break, and I can give him a break too. 

When it comes to parenting, we want our kids to grow up to behave well, and when they don't behave, we are stern with them and typically (not in all households, but I'm willing to bet the majority by far) use punishments from physical to withholding affection in time outs or the like. 

I'm not really going to talk about the down sides of these forms of punishments, because there are so many other blogs who talk about it and express those concerns a lot better than I could, both from a secular and a Biblical worldview. 

What I would like to say is this: autism is still a bit of a mystery to most of us. Obviously if our child isn't speaking and developing normally we notice earlier that something is wrong, and we get help for those kids a lot sooner. However, that level of outward functioning is no measure of a child's autistic abilities or disabilities (different abilities). Consider this post from Autism Discussion Page on Facebook:
"Differences vs. Disabilities!
In previous posts, regarding the controversy over the labels “high and low functioning” and “IQ and autism”, we explored that there are two main dimensions that have to be taken into consideration when talking about autism. There are two dimensions that interplay in how the person’s ability to function will play out: (1) autism symptoms (sensory processing issues, rigid inflexible thinking, processing differences, executive functioning problems, communication differences, social and emotional difficulties) and (2) Intellectual or cognitive impairment (limitations in being able to cognitively process information, understand, learn, and adapt to environmental demands). As discussed in previous posts, a person can be “higher functioning” intellectually, but still have severe symptoms of autism, as well as a person can be more impaired cognitively (lower functioning) with less severe autism traits (more flexible, less sensory issues, easier time socially connecting, etc.). The whole confusion over “low and high” functioning has been because of the misunderstanding of how these two dimensions overlap. Granted, yes these labels are misleading and only tend to devalue the person. However, having a good understanding of these two dimensions (autism traits and cognitive impairments) is needed to truly understand how to help the individual.
There have been a lot of discussions and arguments around if autism traits are a disability or simply differences (different abilities). I think for purposes of discussion here, let’s define “differences” as a different way of processing and adapting, and “disabilities” as limitations in being able to adapt. For example, there are both sensory differences in autism and sensory disabilities. Common sensory differences in autism are better acuity of sensory detail, heighten sensitivity to sensory stimulation, strong perception of sensory patterns, unbiased perception of sensory stimulation, and strong sensory memory. Granted, some differences (e.g. sensory sensitivity) can be a strength in one situation, but a deficit in another (sensory overload). Whereas there are strong sensory differences in autism, there are also sensory disabilities. Deficits or disabilities can occur if the person has strong fragmented or distorted sensory “integration” difficulties, which interferes with the person’s ability to integrate their senses effectively. This can greatly affect their ability to adapt to the world around them in any environment. When you cannot consistently integrate your senses effectively it greatly effects all other functioning. In autism, individuals almost always have sensory differences, but sensory integration disabilities (distorted, fragmented perceptions, integration problems) vary substantially in severity.
The same holds true for cognitive differences. People on the spectrum process information “differently.” They are often more concrete, factual, detailed thinkers, with strong associative and static memory. In these areas they are stronger than the global, more inferential, thinking patterns of neurotypical (NT) people. NT people tend to process from general to specific, and people on the spectrum tend to process from specific to general. People on the spectrum tend to be more factual and less biased in their thinking, then the more global, inferential thinking of NT people. NT thinking tends to be more abstract, whereas spectrum thinking tends to be more literal and concrete, neither good nor bad, just different.
However, there are some processing disabilities that affect autism in varying severities. People on the spectrum can have strong disabilities in rapidly processing dynamic, multiple information, simultaneously. They have difficulty processing information coming rapidly from multiple sources (or multiple senses) at one time. Once the information flow slows down and is given sequentially, the processing improves drastically. Also, people on the spectrum have varying degrees of weaknesses in the areas of “executive functions” which consists of the abilities to control attention, inhibit impulses, organize, plan, and monitor a course of action, and multi-task. These can be seen as a disability because they do greatly limit the person’s ability to adapt. These too can vary in severity among people on the spectrum.
We all have strengths and weaknesses, which come packaged a little differently. Unfortunately, since autism is a minority in society, their differences tend to be quickly labeled as deficits (disabilities), because they do not fit the general norm. Different often stands out as a deficit, or weakness. This is where, like for many minorities, society can severely limit people on the spectrum. We need to embrace the differences and foster their development; not interpret them as deficits. Since their differences can be strengths that we do not have, their value to society can be great. All we have to do is look at some of the major contributions people on the spectrum have made to art, science, and technology. The more we can learn from the way they view the world, the better our world can become. Their strong perceptual and detailed qualities can, and have, dramatically improved the quality of living for all of us.
So, in bridging the two cultures, since the mainstream culture is neurotypical, we need to help those on the spectrum accommodate and compensate for their disabilities (more sensory friendly modifications, changing the information flow for them, respecting their tendency to become overwhelmed in our environment, avoid strong social demands, etc.) and foster their valuable differences. By embracing everyone’s differences, can we all benefit better. We have to be open that these differences mean strengths, not weaknesses.
This series on “labels, diagnoses, and co-occurring disorders” can be found in the green book, “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.” "

So, basically, your child's outward symptoms don't always match up with their level of autism. So a child that seems "normal" may actually be full of inner turmoil and issues that look like laziness or other things, when it is all a part of their autism.

This is true for me, at least as an adult, I guess. I had so many people tell me "But you're so normal!" - as if that meant I couldn't possibly be autistic because they see my outward function as "normal". What you don't see are the many many inner struggles, the denial of which cause me a lot of frustration because people then aren't willing to understand that I just can't handle certain things because of my autism, whether that be high intensity social situations or conflict, or whatever.

Then I wonder what it must be like to be a child like that. I was a pretty advanced kid, reading before kindergarten, that kind of thing. But I was still ill-equipped for the social environment of school. That remained pretty much the same all the way through high school. You may say "but how would you have ever learned to socialize without being in school". Well, I would rather have not socialized at all, than to have been put through 13 years of absolute torture mixed with teasing mixed with bullying mixed with awkwardness of obsessions and whatnot. School does not = socialization, but that is another topic for another time.

What if a child seems very advanced for their age? They walk on schedule, talk on schedule, maybe even beyond the normal range. They start reading and learning early. Do we deny these kids their autism because they can read, walk and talk? These kids might be advanced in so many things that we use to measure children, but in their heads, they don't understand why they are being punished all the time. They might not listen immediately (because they might not have even heard you when immersed in an activity). They might not understand when you are kidding or when you are serious, so they might think you're playing when you aren't, or that you aren't playing when you are. And I promise you, punishing them for these little things has a huge effect on their own self esteem and behavior in the future. For example, if you punish them for listening whether they heard you or not, they learn that it doesn't matter if they listen, they are going to get punished anyway. Eventually, the child might just become completely passive and inward, or they might act out more because of the confusion or frustration from not understanding why they are constantly being punished for every single action.

If you punish an autistic child for having a meltdown in a crowd, or for being upset over playtime being over, or whatever, you are telling them that their overwhelming feelings are wrong, that they are broken, and that they don't have control over their feelings and that they are wrong. 

If someone punished me because I would rather go to the local grocery store because the big one overwhelms me, I would be awfully confused. What you're telling me is that it doesn't matter what my feelings are, or what my limitations are, it only matters what you want me to do. Therefore, I must look to others for my self worth, I must take the opinion of others as a rule for my own life, to the detriment of my own health and happiness. It doesn't matter if I have a breakdown over noise, crowds, or bright lights, as long as I do what you expect of me. Other people's expectations have more weight than my own needs and feelings.

I know because I have felt all of these things at one or more points in my life. It has taken a lot for me to finally say "you know what? I can say no to this event or that trip because it is just too much for me, and I would rather disappoint them by saying no, than to make the next 2 days full of exhaustion and frustration because of one overwhelming thing".

Obviously, we don't just say no to things we don't like, and obviously we still have to teach our kids right from wrong. But when it comes to things that have no right or wrong, things that you could have some kind of flexibility about ("do you want to wear the green pajamas or the blue?), why do we stubbornly force our children to bend to our wishes, so much so that we imply that they are worthless, brainless, and too stupid to decide?

If my son says he doesn't want to go to the grocery store, I don't force him to go. If I do, I will pay from the mania of him tearing all over the store, or begging for things, or having a surly attitude, or whatever. It is much easier to just say "okay, I understand your need to avoid the sensory input" than it is to force him to deal with things beyond his level. That being said, it doesn't always work out that he can avoid going with me, so he does get practice dealing with the sensory input too. He has good days where he can deal better, and if the store is slow that helps too. There is a balance here. It isn't just about locking yourself in a box. 

What if the child isn't diagnosed? What if the autism is unknown? As an adult who grew up undiagnosed, this is a major factor.
So you don't want to diagnose your kid. So, you don't think your kid is autistic. So, so WHAT? 

This kind of thinking can and should also apply to all children, autistic or not, diagnosed or not. 

You can still respect your children's limits. If you don't, they won't know to expect that from other people. If their no can't ever mean a safe no with you, their parent, then how will they tell their friends no to drugs, for example? So your child doesn't like the grocery store, or they go nuts in there. Some kids aren't able to say that this is beyond their limits, they just don't know to. Teaching kids to have limits and boundaries is a very healthy thing to do. Saying "you seem like you aren't comfortable in the grocery store, how about we have you stay with ___ today instead?" teaches them that they are safe with you and that you can understand their limits. If you have a child who is consistently having a meltdown over certain things, you need to examine what is really going on. If they always have a meltdown in crowds, then you have to understand that avoiding those situations is in the best interests of the child (within reason, and also allowing good days for practice). 

Autistic people often latch on to a belief they have, and they have a hard time hearing anything to the contrary, because their belief is so strong. Instead of forcing something else on them, why not meet them where they're at first? They believe something is a certain way, so empathize with them! "I hear you, you feel ____ because ___ and you're so ___!" This derails the train long enough for them to refocus off their passionate belief in what they "know", so that you can tell them what the truth is, or whatever.

Basically, I'd really love seeing more parents respect their children. There is so much punishment going on. Think about it, do you do what someone else wants you to do if you are forced to? If you do, does it make you feel good? 

I'm not saying let your kids run wild, obviously. I'm just saying that autistic or not all people deserve to be understood, and their limitations respected. So what if someone doesn't like crowds or loud movies or something. Respect their limits, whether its a child or an adult. Many adults are going to be undiagnosed because they were missed (as I was) or they don't know, or they don't want to be labeled or whatever. Many women also will be undiagnosed because of the misunderstanding of autism in females, and this has not changed that much over time (yet). 

So, just respect other humans as you would want them to respect you. Child or adult, we all have our strengths and our weaknesses. Forcing a child into something or to do something just because you think you should, or you think they should, or you want to keep up a normal appearance in front of your friends or family is no service to your child.