How do you stay sane (parenting)

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WelcomeToHolland
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01 Feb 2015, 2:40 pm

I've been feeling so depressed. I have a looming problem that has nothing to do with autism whatsoever that is adding to my stress and maybe making me not handle it well. The school situation with my older son is a complete fiasco and stressing me out no end. My one kid isn't sleeping (last night we literally got no sleep, the day before he slept for 2 hours…), my other kid is refusing to eat anything other than cucumbers and spinach (at least it's not french fries and plastic cheese?). I've been having a very hard time motivating myself to do anything, although of course I still do do things, because I don't really have a choice.

I feel like I need something to look forward to, or a project to work on, or something. But I don't know what that would be. I have been working on my 'sensory room' (my project, their room) as my project but it's pretty much done. Last night, as my son was running around flipping over furniture (this is his new preferred activity for 1am), I sat there and threaded hundreds of different textured beads onto 30 different strings, and then hung them from the door so you have to walk through them to get in the sensory room. If that isn't a sign that I've lost my mind, then I don't know what is. My house is a mess and it doesn't matter if I tidy it up because my son just goes and throws everything on the floor while I'm doing it.

Last night I was also thinking that I want to go on a skiing vacation… LOL (don't worry, we're not going on a skiing vacation how much I want to!). I think I want to do something novel, something different, and something fun. But I can't. I tried to do this on a small scale. At Christmas, I took my kids on this Christmas train ride thing and that was a f*****g disaster. And it wasn't a spur of the moment thing, I really planned it out carefully, I wanted them to have fun, but they didn't. And that depresses me. I feel like we're stuck doing the same old stuff we've done since they were born because that's all they like to do, and it drives me crazy sometimes.

Look, I love my kids, I really do. They're great kids and I hope nobody feels like I'm dehumanising them or anything. I'm coming here because I feel like you guys on WP have a more positive mindset towards autism, so maybe you can give me some nifty tricks to help me be more like you I guess. I don't want to be so negative. A lot of the time I'm not. Just lately I've been struggling.


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guzzle
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01 Feb 2015, 2:58 pm

Make time for yourself and spend that time on yourself. The sensory room might be your project but it's not time out. Spend an afternoon pampering yourself with massage/hairsalon/jacuzzi, whatever tickles your fancy. Recharge your batteries so to speak and the only way to really do that is to be selfish. And there's nothing wrong with an afternoon of selfishness if you organise everything beforehand.



LeLetch
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01 Feb 2015, 4:45 pm

Hmmm, yeah, your sanity is getting chipped away. Attempt not to focus on this. It's... ugh... natural? Essentially.

Tip list. I will now make one:

A) "I think I want to do something novel, something different, and something fun. But I can't."
Granted, it's true that getting autism diagnosed children (or teens) out of the house is good, just as it is for any children. But, let's try to be reasonable on this. If the activity does not involve something they like, resistance will begin to set in, and will be made into a torturous undertaking if the following is required: Staying still. Being attentive. Maintaining good manners in a public setting while staying still.
You may feel that your children are missing out on all life has to offer, and that you are failing as a parent because of this. You want to do something novel, and something different.
These are generally very scary words to someone with autism.
If you open up a wider range of interests to your children, that would be great. I can assure you that even if you do pull it off, they're just going to pick two or three things out of that brave new world, and focus exclusively on those things. This is good, but you will become bored of whatever the new obsessiveness entails, just as you're bored of the old ones.
"I feel like we're stuck doing the same old stuff we've done since they were born because that's all they like to do, and it drives me crazy sometimes."
Hmmm. You use the word "we're". They probably do not feel 'stuck' doing the same old things.
You may be attempting to engage in your children in their own personal interests too much. You may have a need for positive, fulfilling contact with them that is not being met. Consider participating in shorter intervals. Essentially, it's the thought that counts.

You can attempt to introduce related activities. It's very hit and miss. It's important to introduce multiple new ideas, as many will get shot down. Trying to introduce activities that are completely new is far more difficult.

Attempting to find a babysitter or family member can be very difficult, especially one that will mesh with your children, but it's highly recommend you find such a person and maintain contact with them.
The reason i suggest this especially, is because it may be necessary for you to come the possible realization that normal, wholesome family outings taxes on far too many the weaknesses of individuals with autism.
Your planned activity sounds relaxing. Don't bother feeling guilty if you exclude your children from activities that aren't likely to hold their attention. They likely won't feel as left-out as other children.

B) Furniture flipping. That sounds like alot of fun. If standard disciplinary measures have failed... Consider participating in the activity, and then have your child help you put the furniture back, by explaining to them that it HAS to be put back in order to flip it over again, and then flip it all over again, with your child. (This could be a bonding activity)
By doing this, you'd be introducing an element of correct behavior into the activity. Remember, this has a greater chance of actually working if you START by flipping over furniture. Do not skip right to placing the furniture back in it's original position.
Be wary of establishing your role as 'the person who puts the furniture back'. This is your current role in this specific patterned behavior.
However, be wary of not putting the furniture back, at all. If you cease putting it back in it's original position, your child may panic when they can suddenly no longer engage in a this repetitive behavior (any such behavior generally brings a certain degree of comfort to an autistic person), as everything is still flipped over.
Repetitive behaviors occur more often in people with autism when they are either stress, or uncomfortable, or simply bored. It is likely your child is having trouble sleeping. The 1am activity they have chosen expends a great deal of energy. This is probably NOT a coincidence. Your child probably gets to sleep better after exhausting themselves. They found the solution to the problem. Unfortunately, it's your problem now.
The above stated activity takes physical energy. If your child or teen has this much energy at 1am, consider finding them an activity in the afternoon hours of the day that will burn them out. Normally, sports are recommended. Sports take co-ordination which is often lacking in autistic individuals. Sports also takes teamwork, which again, you know, autism.

Some community centers have free-time in their gymnasiums. This is recommended. Other people the same age as your children will be there, however, socializing is not mandatory, which could be comforting. It is also free-play. Free-play activities are recommended. If one of these places is in walking distance, and an adult in a supervisory role is on staff and watching the area, depending on your autistic child's level of independence, you may be able to send them to this kind of place for an hour or two, eventually, without having to go yourself, giving you a breather.

While we're here, swimming is another activity that may work. It has the added bonus of being an activity that you can participate in as a family. Double added bonus if you can supervise your children from the comfort of the small Jacuzzi that is sometimes present in some facilities.

C) "I've been feeling so depressed."
Be aware that although individuals with autism typically do not pick up on subtle emotions, and are often poor at expressing themselves, especially in terms of emotions...
If you are giving off an aura of doom and gloom, it will be picked up, and oftentimes copied. They way you describe your children's currents states could be indicative of THEM having stress, anxiety, or depression.
It could be a downward cycle involving your whole family.
Consider temporarily prioritizing your emotional needs over your children's if this gets worse. Bringing your mental state back to normalcy should probably be prioritized.
"I sat there and threaded hundreds of different textured beads onto 30 different strings, and then hung them from the door so you have to walk through them to get in the sensory room. If that isn't a sign that I've lost my mind, then I don't know what is."
On the surface, that seems fine. In my past experience, this kind of thing is a sign of extreme stress among pretty much anyone. You may be overloading yourself with tasks and thoughts. Actually, come to think of it, you're building a sensory room. I can see why. Damn.

Slow down.

"I don't want to be so negative."

Autism is usually disabling. Complaining about your children when they do things that make your life difficult is normal. These children probably cause more havoc than other children.

You're probably just trying to be tactful by saying that you don't wish to dehumanize your children, but this kind of statement from you could be a sign that you need to complain about your children more. Other parents complain.

It seems like you might be holding it a little.

Do not be afraid of choosing the lesser evil. You're raising children who may have more needs that other children.
If you want to get through this, you may simply have to do what works, as long as you remember to love your children, and don't break any laws :P



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01 Feb 2015, 8:39 pm

You have to give yourself permission to seek outside-the-box solutions. Maybe you can spend an occasional night "away" at a local hotel, or at a parent's or friend's house. You can go to the movies by yourself (I used to do this all the time when my kids were younger - no one at the theater even bats an eye!) Go out shopping and only spend money on yourself. Do whatever you like, even if that's just getting some fast food and eating it in your car while listening to NPR.
Be selfish, because in the end it's true what they say - if momma ain't happy, ain't nobody happy.



WelcomeToHolland
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02 Feb 2015, 9:00 am

Thanks for your replies.

I definitely agree that they probably sense my stress, and I feel very guilty about that. I try to do something about it, rather than think about it, though, because when I think about it, I feel worse...which is stupid, I know, but that is what happens.

We are on a waiting list for respite care. It was supposed to be 8-10 years waiting, but I phoned a few months ago and they said unless I have an "emergency", it'll be more like 12 years. They've been on it since 2007, so we probably won't get anything until around 2019. I used to have a babysitter but my kids are too much for a babysitter now.

LeLetch, I'm still going through your list, but here are some thoughts of mine:

My son's sleeping is not unusual. He has never slept more than 4 hours at a time, ever, not even when he had mono (and he was really tired when he had mono). I've had a lot of opinions about his poor sleeping habits, and one thing I've been suggested is that he likes the individual attention he gets at night, and that I should ignore him as much as possible at night (and give him attention at appropriate times/ during the day). I did that for about a month consistently but didn't see any great improvement... he doesn't seek out my attention and doesn't seem to care. Lately, I've been spending more time with him at night, but I don't want to give him the wrong idea- I want him to SLEEP at night. He slept for 4 hours last night, but it was broken up- from about 11:30pm-1:30am and then 3:30-5:30. 5:30 is actually really late for him, normally he's up by 4, so that's good I guess. He does have a type of epilepsy that has poor sleeping listed as a symptom as well.

He does a lot of energetic activities- swimming, dance, gymnastics, soccer...as well as running/jumping/leaping around almost non-stop all day. One thing I've noticed is that he seems to be more energetic when everyone else is still. Maybe that's part of the problem at night too- everyone is lying down. He's normally the most hyperactive kid, but whenever we go to this trampolining place (where everyone is leaping around), he sits still in the corner. Too loud is the obvious reason for that, but I do wonder if it has something to do with the movement level as well, based on watching him in other situations. I have no idea why that would be though.


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kraftiekortie
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02 Feb 2015, 9:26 am

It must be difficult on you not getting any sleep. Does he need to be supervised constantly, so he doesn't hurt himself?

Maybe you could insert a monitor in his room, or maybe something that warns you when he LEAVES the room? Maybe you could get sleep that way. As long as the beep doesn't go off, you know he's content in his room.

I don't know. I wish I could offer better advice. But it's important that you get sleep.



Fitzi
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02 Feb 2015, 10:00 am

You need some sleep for sure, and you need to gather help.

Can you afford a cleaning person once a week? I feel like, if you can, this would be a really easy thing to take off your plate. You need (in my opinion) to take as much off your plate as possible.

I know you said that they are too much for a babysitter, but can you hire a babysitter to just be there *with* you when you are home sometimes? Like a mother's helper? This way, you might be able to get some rest or relax, but the babysitter can alert you if there is a situation you need to be present for.

Can you arrange to sleep out of the house for a night on a weekly/ bi weekly basis? At a friend's? I stayed at a friend's recently when my son was going through a transitional period that caused him to have meltdowns for most of the day for days on end. I knew I needed a break because I was really starting to lose my patience. It did a world of good for both me and my son. Even if it was only every so often, whatever you can come up with will help.

You probably don't even realize how stressed you are. You are not being weak or selfish by reaching out for help or taking a break. It will be beneficial for your whole family as well.



modernorchid
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02 Feb 2015, 11:52 am

I feel for you, my Dd goes through stages where she doesn't sleep. For her sleep issues, I tried over the counter, (in order of desperation)…1)chamomile tea (this will work to calm your adhd child too), 2)liquid 1 mg melatonin in her drink an hour before bed but she wouldn't stay asleep and would get up in the middle of the night…..finally 3) 5HTP worked!! However, check with your child's doctor first because it doesn't mix with meds and make sure you use tiny amounts and only for a short period. It helped regulate her sleep cycle and she is sleeping much better now. FYI sleep deprivation has been linked to seizures and causes many other issues like depression. So, you need to get everyone sleeping as soon as possible.

I have random dance parties with my kids. We take turns choosing the songs and shake it, lol. It puts all of us in a better mood and gets rid of their excess energy. Of course I also need to rest after.

Is there a hobby you could do at home? My husband is into cars, graphics and photography. I'm into gardening, reading, wine and tea. Try joining a forum for your hobby, example goodreads or garden forum.

As for taking the family out…look for an autism support group near you. They usually have events for family and it's a load off not having to worry about how our quirky kids will or won't behave. TACA and meet up are some sources. You could also create your own group! I did, through meet up and have met some awesome aspies and parents/families :)

Best of luck!



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02 Feb 2015, 4:12 pm

Just saw your second post regarding the epilepsy. We just started on the same journey, with my Dd having seizures. I have done some reading on the epilepsy forums and we are incorporating Coconut Oil into her/our diets. It is tasty, easy to cook with as long as you use medium heat, spread like butter on toast or mix with peanut butter. Something about the Medium Chain Fatty Acids increasing ketones just as well as the difficult to follow Ketonic/Atkins diet. Also, vitamins B6, B12, magnesium and omegas from flax seed. We are also going to a neurologist soon.

I took her out of school to focus on her medical issues and I am staying home with her. So, I understand your stress and feel overwhelmed at times also. I found a free weekly morning yoga class, I run out while she sleeps and leave my husband in charge. You could try doing something like yoga, tai chi or meditation through a dvd, or other media at home or try to find a class. It helps relieve the stress.

Do you have any family or friends nearby? Who can you count on? If you don't have family around maybe you can exchange babysitting privelages with another special needs family who also has a hard time finding a sitter.

Hugs



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02 Feb 2015, 7:03 pm

He needs someone watching him at all times. Most of the time, I can do other things, but I do need to be paying some attention- I can't have a shower while he's awake or anything like that. He will not stay in his room... and I can't lock him in his room for safety reasons (I know nobody suggested that here but I have had it suggested).

Back in the day when I was happily married, my husband and I used to take turns doing "night duty". Currently, my kids and I live in the upstairs of this house and my husband lives in the downstairs, which is made to be a duplex/separate rental suite thing. So he "lives with us" but not really. There is a good reason for this. We could switch apartments a few times a week or something, so I would get to sleep. The reason that hasn't already been done is that my husband hasn't been very mentally stable in the past few years, so it's a sloooooow integration. But hopefully soon.

I guess my hobby is home decorating. I love my house. I think it's gorgeous...LOL.

Epilepsy. My son has a type called Dravet Syndrome, which is notoriously difficult to control... We tried the Ketogenic diet a while ago and it did not work, but that was ages ago and we (as in, his neuro and I) were thinking about starting it again some time soon, since it didn't do any harm, so we might as well try it again. The best thing so far has been vagus nerve stimulation- he had that put in last January and it has reduced his seizures far more than anything else ever has. He's also on 2 drugs as well.

I've been thinking about doing yoga lately... There's actually a yoga place that just opened right underneath the centre that my kids do OT at, so maybe I could find a yoga session during their OT! That would be super. I'm not supposed to leave the building while they're doing OT, but technically I wouldn't be leaving it, so maybe I could swing a deal with the therapists..haha. Maybe I'll get a DVD.

Honestly, a cleaning person wouldn't really help. I'm OK with cleaning (wellllll, it's not my favouritest thing in the whole entire universe, but you know, I can manage). The issue with my house being a mess is that he is just ALWAYS MAKING A MESS. I know, I know, that's what kids do. It's on a toddler level except he's more physically capable (being that he's 12) so he makes a much bigger mess than a toddler does. I'm not even really bothered by mess, but it's the endlessness of it that I find depressing sometimes. That said, it's not my biggest problem.


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YippySkippy
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03 Feb 2015, 10:23 am

Can your husband take care of the kids on his own sometimes? If not, then he should be paying child support. You may have to divorce him to get it, or perhaps you can negotiate something. You need the money to pay for respite care. He needs to pull his weight in some way. Right now it sounds like you are a single parent without any of the societal supports afforded to single parents.



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03 Feb 2015, 7:07 pm

The situation with my husband is on the up right now. He has some mental health problems, but he is doing really well at the moment (right now he seems perfectly fine to me). The reason I haven't thrown the kids at him since he started doing better is that he has done well before, and then suddenly done very poorly again, and that's hard on the kids. I think it's better to go slowly and make sure he's really here to stay for some period of time, because our kids, especially our younger son, depend so much on sameness. The reason I haven't totally given up, is that I've known him for over 20 years and this is a recent thing. We made a plan on paper of when we'll start doing what to integrate him back slowly- sleeping over is on the plan. I think that's for the best, but I don't really know... I'm never really sure what the right thing to do is, but it seems like the best idea I have anyway.


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kraftiekortie
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03 Feb 2015, 7:38 pm

It's a bummer that it's such a juggling act with your husband.

I would be pretty frustrated myself. You have the patience of Job.

I would try to, slowly, assist yourself in assisting your husband to help you out with the kids.