How do you all deal with the decision process when it comes to activities? I never had to give mental or physical exertion any thought before since the consequence was not so severe. Now I find myself getting anxious when my husband asks "what's the plan for the weekend?", and when the kids ask to go somewhere. I hate that I seemingly have to plan my days so that if I do have alot of housework for instance, or errands, that we do not have an early morning appointment or other commitments the next day. I did not plan ahead yesterday as I was feeling better than average (ast least for me), so I took some short walks with my dogs and went for a half hour swim. Both were enjoyable, but I paid for my lack of foresight by not being able to sleep past 3 am when the pain woke me up and would not let me get comfortable enough to fall back asleep. How are we supposed to enjoy the "good" days or at least the "better" ones if we PAY for them dearly later? I like being an "in the moment" kind of gal, but this stinkin' PsA does not allow for it. ~sigh~ We have a chance to go to Portland, OR in July, but I now am afraid to commit. It is so stressful to pack everyone and remember all the meds (including my son's) who has type 1 diabetes and does not remember or manage to care for himself on his own. What if his sleep patterns get messed up and he starts to sleepwalk/sleep eat again? What if the trip renders me too exhausted to care for him properly? What if my brain fog causes me to forget to check that he dosed for his meal (like what happened yesterday). This PsA has sapped my spontaneity.
Women with clean houses are boring.
Foggy brains can make good use of an app called "keep track-pro" both android iphone.
Sometimes you pay and sometimes you don't, but if you don't do something because you are afraid of what it will "cost" you will have nothing
Every meal you cook, double it freeze one to be nuked when you are paying up or saving up for a memory with your kids.
Believe it or not the more you move the less you pay (didn't say you won't pay) Housework - vacuuming (especially vacuuming) and laundry are the WORST activities you can do pass these chores out
For the meds have the pharmacist blister pack them by day time (they do this all the time for seniors)
For packing, do what we do when we cruise. pack your old underwear socks T shirts and anything else that questionable and throw it away as you use it. ( at lot less to do when you get home) Run short? souvenir TeeShirts. You will never see any of these people again and besides there ar more locals wearing their old clothes than TOURI (plural of tourist) dressing to impress with their matching short outfits bought for the trip.
The Portland Zoo, the Grotto, and my favorite of all IKEA etc all have loaner chairs - use one. or rent one to take, If you don't need it, carry your back packs or take turns with the kids, someone is always at the edge and whiny - a break will do them good.
I'm not trying to be trite, but no one will ever appreciate the day to day MOM stuff, and there is no evaluation committee so plan your weekends and your "me time" If the fam wants more done around the house than you are willing/able to do - tell 'em how
Now is the time you learn to delegate. Your husband needs to step it up and take more responsibility for your son's medications, and everyone in your household needs to help more with housework, packing, etc.
Here are some things I do that help...
- I make and post lists of what needs to be done in each room of the house to keep it clean, what needs to be fixed/replaced/etc. around the house, etc. and a calendar of activities (I have a GIANT dry erase board!)
- I try to schedule appointments in the mornings and have my afternoons free so I can get some rest, especially if I have something going on in the evening.
- I make use of my wheelchair even when I'm still feeling good, because it allows me to rest my hips/legs and conserve energy for upcoming activities.
- My kids each have a zone of the house they're responsible for each week, and the zone changes weekly. For example: the kitchen captain loads, runs, and unloads the dishwasher, occasionally hand-washes dishes, and is responsible for at least one dinner a week (my four-year-old included!). The laundry captain brings all dirty clothes to the laundry area of the basement (I don't do stairs unless i have to) and does 1-2 loads a day. The littles get help from the bigger kids, and often my husband has pre-sorted loads of dirty laundry in bins waiting to be washed.
- When going on a trip, I start packing at least a month in advance. I go to the thrift store and get extra shorts/shirts for everyone (unless someone has an overabundance) and pack a few outfits for each person so that a couple days before we leave, I just have to pack a few outfits per person instead of a whole wardrobe. I buy new socks, underwear and toothbrushes for summer vacation / camp each year and pack them. We cook a lot of our own food on vacation due to me having celiac, so I pack non-perishable food items, a small flexible cutting board, etc. I pack all the extras we need for camping. A few days before the trip, each family member has to get the rest of their clothes ready and bring them to me to pack. I also write down med schedules/reminders. I make a master list of everything we need, so that I can simply check things off as they get packed and send family members to get things while I sit and pack them.
- When on a trip, I'm "on" in the mornings and "on vacation" in the afternoons and evenings. It's my husband's job to keep up with food allergies/what the kids are eating, meds, etc. and it's my job to rest so that we can ALL enjoy our vacation.
- Mostly I realize that my body has its own rhythm and I just need to go with the flow. Some days, that means I'll be in bed. Other days, it means I'll be playing outside with the kids or taking them to the science center. If there's something I *really* want to do or the kids really want to do, I make sure I have time to rest before and afterwards (as in, the day before and the day after!!!).
Okay Nym did it better than me, and I don't want to start a new underwear/old underwear debate and I forgot the thrift store thing. I will say the other thing we did for packing was labeled seal bags for outfits etc. kids can make a mess of thinks quickly, so we also had our suitcases packed in order and Mom was in charge.
Not better, just differently and with a lot of OCD thrown in for good measure. :)
Ah - the sealed/labeled bags - we've done that, but last vacation my hands hurt too much to seal the damn bags! LOL
The new underwear /socks is so I remember to pack underwear and socks ... I tend to forget and end up needing to go to the store the first morning to buy some. LOL
@Nym and tntlamb Thanks for your ideas and encouragment. I like the travel tips. For the day to day stuff, I don't think delegating works too well with our family dynamics. My adhd 10 year old does more sometimes than my husband and 13 year old combined. The hubby and older son both have aspergers and are very challenged with following instructions and follow-through - written or otherwise. We've done the charts, lists, incentive programs - to no avail. If it is an undesirable activity, no amount of incentive is worth it to them. My ds would rather take a consequence (punishment) than do something he does not want to do. Hubby is out of town 1/2 of the 52 weeks of the year anyhow, so for me I actually have Less work when he is away. Sad, but true. The few times I left hubs in charge, even if only for a few hours, were downright disasters. It would not be so bad if it were issues as simple as meals or cleaning, or remembering a coat, but they both seem incapable of caring for the type one diabetes, which is downright scary and dangerous. I treated myself to going to a homeschool conference and no sooner did I get there and hubs was calling me, yelling "where did you hide the peanut butter?" I went home 4 hours later to learn that the kids did not eat, and my older boy had not checked his blood sugars the whole time. His BG was 561! This happens almost every time I try to leave them in charge. Don't even get me started about things that happened at boy scout camp with those two! Hubs is not cabable of waking at night to check blood sugars at 3am. He and my son are very deep sleepers. It is not that Hubs is a bad guy, he is just wired so differently that typical approaches do not work. I leave notes, I make lists - no results. In addition, both hubs and ds are oppositional too. If you ask them to do something, they automatically do not want to do it. To alleviate much stress and disappointment, I have to be very careful in what I ask them to do. Sorry to ramble on about this. It sounds like I'm complaining, but I'm simply being pragmatic after dealing with this for more than 23 years. In the meanwhile I am learning not to over-volunteer, I'm learning to say no, and I'm trying to learn how to rest and not feel guilty about it. I am "on-call" literally 24-7, and until there is a cure for diabetes and aspergers, this is my life if I want to keep my kid alive. I also have to stay awake until midnight since my 13 year old also has a sleep disorder which resulted in extreme sleepwalking for several months. I've had to chase him through the woods at night, keep him from breaking through windows, dose him with insulin for the food he'd eat - all while he was sleepwalking. Staying up until midnight and giving him trazadone and clonodil at 11:45 PM is the only thing that stopped this cycle. It is really exhausting because I'd love to be in bed by 10PM. I am just SO grateful that we are in our 4th week of no sleepwalking!!!! Any change in the sleep routine, and he might regress, so we are keeping things steady and the same for now. I really think the PsA came on due to all this stress over the past several months. We moved, DS became depressed and suicidal, and tried to run away in November. Turns out that he was extremely homesick (we moved from Pgh to NC in June) and he had a delayed grief reaction to the change. I'm happy to report though that my son is much better now that he is on Zoloft and Lamictal for mood. Again, not complaining here, just explaining so you all know where I'm coming from. I love them all to bits, but some days....Calgon, take me away! I miss just picking up and going on a field trip on a whim if ds was having an exceptionally bad day - I'm just too tired these days. I'm new to this PsA stuff, so I have a big learning curve. I appreciate any and all advise from those in the know.
The lists an charts are for you... It makes things a lot less daunting.
First of all is your sons Asp diagnosed as medical, educational or psychiatric (or all three)?? It doesn't matter but you need to call either family services or regional mental health ASAP and get a case manger. (your doc may be able to help) In the Carolinas they have handicapped services through one or both The diagnoses may determine which agencey is primary(I assume you have applied for and gotten SSI for your son, but if haven't do so so he gets disability medicaid.)
You want family support services. (your case manger will make it happen) They will in addition to helping you work out a plan for your family, send in a family support specialist. (They are also called behavior aids in some areas) their job will be to help YOU cope but its done in a practical way. They will take your son through a daily routine. For my grandaughter it involves picking up her room, sorting her laundry, setting the table and a few other chores. (not to mention hygiene) This is federally funded so don't give up.... If nothing else they will help you get through the witching hours (that time after school) Their is a bunch of other things they can do as well camps shadow aids etc etc.
If your son (and I know how hard this is to deal with) has ever been Violent or Suicidal (there are other reasons but theses are the easiest) there is another program called the wrap around. (also federally funded) In this program an even higher level of assisted care is provided (you a different case manger called a wrap specialist) They will put together a complete support team pretty much anything less than the cost of residential treatment is okay.
Oh one other thing "oppositional Disorder" with spectrum has proven to be in most cases NOT to be that but rather a compulsive resistance to change of routine. You son would rather have a consequence because that is the routine. One of the things family support specialists do is develop new (more positive) routines. it can be funny My grandaughter sets the table even if we are going out because thats her routine
Also with either program and lesser ther is respite care available USE IT! we avoided for years (pride mostly) Its made the BIGGEST difference of all. (who knows maybe you can time it when husband is a way and spend a day or so in the tub reading and eating Bob Bons.)
You need help and its there.
Now call an alarm company and gave them wire your house especially your sons room and doors. Its free but you will pay a monthly charge about 30 bucks (whats a nights sleep worth) if he decides to go on a walk about you'll know about it. In the mean time you can go to sleep. the alarm charges are often picked up by the programs.
Your 10 year old is eligable for services too.......
I won't get into the meds, but there are others available. as you know some of the ones you are using (essentially blood pressure meds) are only good for about 4 hours. make sure you have a child psychiatrist doing your Rxing.
Wow, just dealing with all of that must be exhausting!
With my aspie 13 year old, getting him to do things was a huge challenge. We go him into the routine of doing the same chore every day and eventually worked into rotating chores each week. Since there are several things that need to be done in each "zone" each day, he gets to choose one of those things to do - this puts the power in HIS hands, so he responds to it better. We also don't take things away when kids don't do as they should - they EARN things by doing what they're supposed to. They don't get screen time (netflix/dvd/computer/dsi/wii) until they meet their household obligations. They earn being up for an extra half hour (which in reality is when they need to go to bed - but don't tell them that! LOL) by cleaning up after themselves throughout the day and cleaning up after dinner.
The lists are mainly for me - and a reminder to the kids of what needs to be done. One thing I have found is that having them posted somewhere everyone passes multiple times a day, occasionally my husband will actually look at the list and do something that needs to be done without being asked. What I do with my aspie son also works with my (possibly aspie) husband (who doesn't see that there's anything that needs to be done and doesn't remember anything I ask him to do) - I give him a choice of two things and he's usually ok with doing one.
Thanks Nym and tntlamb
We do have 2 dry erase charts; a chart for chores and one for school. subject They are posted in the kitchen. They earn their computer time by getting their school and 1-hour of reading time done. They do not get to play at the neighbors until the chores are done (those are what I meant by consequences). They get power in being able to choose the order, and they get a once a week skip day for math (which freaks them both out). We even tried a marble incentive jar for awhile to encourage positive and uplifting behavior in the house. 7 marbles by week's end would result in a fun activity of the child's choice. This was too much for my aspie sadly who melted down and began to call himself stupid. Perhaps my timing with all his other stressors was not good. We've nixed the idea. I had to laugh about giving the hubs 2 choices and hope he picks one. I also do that. Problem is, he'll say he is doing it, 4 hours later, or even tomorrow, it is not yet done. Ha Ha ha. Yesterday we did manage to get their room cleaned, but I had to keep waking up my aspie, and reminding my adhd kid to put the Legos away instead of playing with them. LOL tntlamb, I did wonder about services hear in NC. DS had BSC, a TSS wrap-around, mobile therapy, and attended the Wonder-Kids social skills program. We had a case worker and medicaid through the loophole in PA. He received these services for 5 years. He was doing so well and fitting in with typical friends after school and in scouts. The BSC and Wonder Kids both said he was modeling great behavior for the other kids so we slowly graduated him. He is currently under the care of a Neurologist for his sleep disorder, a psychiatrist and a psychologist. We don't have SSI on him here and not sure if we'd get it. Hubs makes good money now and DS may be deemed "too high functioning." In PA, the medical assistance was not based on income so I had both the kids covered by MA for co-pays and deductables and hubby's insurance was primary. Even in PA the wrap services were mediocre at best. We switched agencies once, and had one TSS removed from ds's case due to unreliability. Most were "green" and fresh out of school. One did nothing but play Uno with him for 3 hours. I did not need a baby-sitter! We also had terrible turnover (not including the TSS we had removed) we had 2 BSCs and 5 TSS's in 2 years! So much for continuity and routine in my son's life. tntlanb, I will look into SSI here in NC, but the services I here are terrible here. It is a poor state. I enjoy the lower taxes here, but the price we pay is nil in services. BTW we have alarms and bells on the doors. Loud sounds freaked him out terrible and exacerbated his agitation during his sleepwalking spells. Plus, I cannot sleep if he wakes up and starts to pound down yogurt tubes by the dozen. He needs insulin for everything he eats. I would love some respite care if I thought I could get it. I'm not sure how DS would take it now that he is 13. He is so mature in some ways, and still like a 3 year old in others. He does feel keenly though if he feels he is under scrutiny by someone. He HATES going to the psychologist but does it because I stress the need for it. In addition, bless his heart, he does not want to hurt her feelings by discontinuing his sessions. I was hoping for ny 2nd respite in 6 years by sending DS to diabetes camp again this year. Turns out they won't take a sleepwalker due to safety concerns. If he is tired enough, he actually has sleepwalked during the day when he laid down for a nap! Those were really scary since we weren't expecting it, and due to the daylight he was more animated than other times, climbing woodpiles, picking up an axe, etc. You have inspired me to contact the local social security office etc. though. I really need some help and did not want to have to get it from strangers. Hubs won't be too happy about it, but I'll spoonfeed him on the idea once I know I can get something. Wish me luck! Thanks both of you. I needed a kick in the ass. For goodness sakes, I used to co-moderate a special needs homeschool support group and would advise similarly. Both of you are on point and helped me realize that I am doing some things correctly.
We have the alarms hooked to a light in my bedroom and motion sensors on the hallway lights, trust me I have been where you are with the sleep walkers.....
I can't help but laugh at the marbles. been there tried that, same results not sure how to teach consequences.... The one thing that did work (for a while, why is it always just a while) is I had a timer in my pocket that vibrated every 15 minutes (I could set the time) reminded me to make a quiet comment positive about what she is was doing. Sometimes taking praise is hard for these kids too.....
We had Uno player too. Not all bad, as my wife said at least she knew there was one time of the day she could use the bathroom with a reasonable expectation of peace. Funny thing about that girl they progressed from UNO to doing some pretty cool things in the community Tana actually went to McDonalds with her and ordered without melting down.... they rehearsed for a week.
Of course you are doing some (most) things correctly. There are no rules on the spectrum.
Sorry this crazy train got so off track. Thanks for the heartfelt responses. I do plan for trips just like Nym (I'm a little OCD too). I still don't know if I can physically or mentally handle a trip to Portland, but I am more concerned with having to say no to my kids too often. They usually do understand, but the other day I caught part of their conversation as I was laying on the couch. "Don't ask her, you know she's gonna say no, she's on the couch." They wanted to go to the pool, and yes, I would have said no. I was doped up on tramadol and did not feel as though I could drive. This is not the mom I want to be.
Don't beat yourself up...... If you have taught them to "understand" you have done a lot more for them than a lot of parents will ever do for their kids.
I used to teach college kids. It continued to get sadder and sadder what was coming through. The more independent they are the younger they are, the better. About the only thing some of these kids could do on their own was what came "naturally" Kids actually were calling their parents for suggestions of what to do with their free time. They were so used to "activities" that they couldn't create their own. HONEST.
Others had done so much, they had no way of seperating it in to "Special memories" childhood was a blur. I frankly saw very few kids for whom parents did too little TONS for whom they did too much.
If you give them love, structure, a moral base, and some nutrition and occasionally clean clothes, you are way ahead most. Its easier to over do than under do. If you mange to put together the trip to Portland, that will stick with them better than an annual trip to Hawaii for Christmas break as will a special back yard camping trip with bluberry pancakes. for breakfast.
Now I will stick my nose into your business "again" Kids underwear, packing, husbands, aside the thoughts of a 4000 mile trip from the carolinas to oregon terrifies me. ( And I have traveled all over the world and loved it) My nephew is the marketing executive for a majo rcruise line. We can cruise first class any time we want for 25.00/day (it cheaper than staying home) and we don't do it because flying from Montana to Fla is so daunting for me. So I guess I'm asking are there other considerations that are making things even cloudier? Its okay.
BTW you get to Portland pretty directly by train from DC area and or connect from the carolinas. Its about 4 days through amazing country the kids will never forget if driving or flying is to hard. and trust me there is no more comfortable way to travel when you can (with our disease)
Thanks for the kind support tntlamb.
I like the train idea. I wonder if I can take my dogs. I hate the idea of leaving them. They miss us so much when we are gone, even for just a few hours. I will look into it. Thank you.
tntlamb said:
Don't beat yourself up...... If you have taught them to "understand" you have done a lot more for them than a lot of parents will ever do for their kids.
I used to teach college kids. It continued to get sadder and sadder what was coming through. The more independent they are the younger they are, the better. About the only thing some of these kids could do on their own was what came "naturally" Kids actually were calling their parents for suggestions of what to do with their free time. They were so used to "activities" that they couldn't create their own. HONEST.
Others had done so much, they had no way of seperating it in to "Special memories" childhood was a blur. I frankly saw very few kids for whom parents did too little TONS for whom they did too much.
If you give them love, structure, a moral base, and some nutrition and occasionally clean clothes, you are way ahead most. Its easier to over do than under do. If you mange to put together the trip to Portland, that will stick with them better than an annual trip to Hawaii for Christmas break as will a special back yard camping trip with bluberry pancakes. for breakfast.
Now I will stick my nose into your business "again" Kids underwear, packing, husbands, aside the thoughts of a 4000 mile trip from the carolinas to oregon terrifies me. ( And I have traveled all over the world and loved it) My nephew is the marketing executive for a majo rcruise line. We can cruise first class any time we want for 25.00/day (it cheaper than staying home) and we don't do it because flying from Montana to Fla is so daunting for me. So I guess I'm asking are there other considerations that are making things even cloudier? Its okay.
BTW you get to Portland pretty directly by train from DC area and or connect from the carolinas. Its about 4 days through amazing country the kids will never forget if driving or flying is to hard. and trust me there is no more comfortable way to travel when you can (with our disease)