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.

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. 

THANKS!

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. :)

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.

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.