how do you get a break? | Autism PDD

Just curious how you all - or IF you - manage to take a break from PDD for awhile? Is it even possible when you are taking care of a child on the spectrum all day? It just seems that I'm either dealing with the behavioral/speech/eating/sleeping/potty training, etc. etc. issues, meticulously planning, plotting out and explaining outings as to best avoid meltdowns, driving and participating in school, therapies and doctor's appointments, engaging in "mommy therapy", reading and researching as much as I can on the topic to get MORE tips or strategies to try or WORRYING about symptoms, the future, and on and on.

Every day, I think "you are going to burn out and you've just begun this journey" (dd just dxed pdd-nos a month ago today actually). I don't have family nearby and they aren't exactly the helpful/doting type anyway, have very few friends and even fewer mommy friends in the area. Now, I just feel isolated from them anyway because they all have NT kids and don't understand what it's like with pdd and they also all have more than one (whereas I have been going through recurrent miscarriages (and tons of testing) trying to conceive a 2nd, which is a whole other area of loss and pain that is going on simultaneously as the dxing of dd). Anyway, today I'm sick and I think it's just my body saying I need to rest. Of course all I can think of is how dd is not getting the attention and speech work, etc. etc. she needs today because mommy is too sick!!

Just wondering if you have found a way to turn it off for a few minutes a day and how not to feel guilty about doing so??? Thanks!

Hey sally,

I'm sorry you haven't been feeling well lately. getting a break is tough, i'm a stay at home mom too and it seems as if everyday, there is more to do. my son doesn't watch much tv but perhaps if you pop in a favorite video as a reward for good behavior, you might get a half hour to read the paper or something.  Does she enjoy building blocks, i find i can usually make myself a cup of tea while he's building and demolishing he's creations ( not the most quiet and relaxing atmosphere but hey, i take what i can get LOL) It's very easy to burn out, and you NEED to make time for yourself, i used to find myself walking up every aisle in the supermarket on the rare occasion that i got to go by myself just because it was quiet and how sad is it that my only time to myself was at the market at 9 o'clock at night. eventually, you'll fall into a routine. I also wouldn't shrink away from playdates, although it is hard in the beginning, just explain to the other parents her issues, it's a win win situation, she'll be able to interact with other kids and you'll get some adult conversation. eventually, when the nt kids misbehave, you'll beable to say yourself " and they think my kid has issues" LOLAutism pretty much rules my world. I do work part-time so that gives me a break. I also take a little time to myself during naptime . I usually read a book( non-autism related- can't wait fo the new Harry Potter).  We try to go out to dinner with our friends once a month. A pedicure once in a while is nice too! But other than that my world revolves around therapies, preschool, swimming classes, Kindermusik, naptime.  Well, you get the idea!

Family is supportive but live far away- other than my sister. She is great- but much younger than me. She loves DS though and does babysit for us once in a while. Most of our friends don't have kids- so I don't really think they can even start to relate what my life is like. When we go out to eat, they avoid the topic of DS. At first it hurt my feelings- but then I realized they were probably just waiting for me to bring it up-However, since we go out so rarely, I didn't really want to spend the evening re-capping our experiences with autism.

Anyway- we all need to take the time to take care of ourselves and find a good babysitter!  Making time for myself is hard, mostly because of my own mommy-issues. I;m a single mom, so I have to work full time to tafe care of us. I do tend to take off during the summer months (I teach). This week will be the first time that I take a trip without Ben. 3 days and 2 nights of not running in circles. This will be hard. Benjamin will be in good hands. I totally trust my parents with him. I also belong to a wonderful church where we have been more than accepted. Other families inculde us in their lives and activities. They have  really 'walked' with us and see the progress that Ben has made. Please take your kids to as many public places as you can. It's hard at first and often embarressing. However, I now see that Benjamin has benefitted from increasing amounts of stimuli. He now knows that everything is not going to kill him. Ben is verbal so he is able to tell me when he just can't be with 'so much people'. I respect and honor that, but i don't keep him from all public events. It is important to know where to draw the line, to prevent regression. It does get easier as you develope routines and progress in therapies and such. Benjamin is almost 7, and no one could have told me a year ago we'd be this far along. Hang in there! You're  going to make it. JanetHi, I had these sort of issues too (I have two with Autism 13 and 6) and I always felt guilty about taking out time for myself. I was very lucky and received funding for three hours care a week and I used this time for the carer to continue doing the therapy while I took out my other child for an outing. Maybe you could find Psych students at the local university who would babysit for a reasonable fee and who would be willing to implement therapy activities. If you don't take out time for yourself to exercise, destress etc. then you aren't giving your child your best anyway. Good luck, it does get easier over time That is a good question...
I work parttime too and it is a break somewhat, at least I can get online here and there LOL...if i'm home Nicholas thinks its his time to get on...he love the puter! But I'm up at the crack of dawn, I get ready get him up get him ready for his summer program, he gets on his bus I go to work, I leave work and meet his bus and then we do our thing, I take him out etc...I love it but I don't have anytime for me...and I've kinda given into that...

I can't remember the last time we went out w/ out my little guy...we've gone to a few weddings over the last 4 years but nothing really other than that. I think after reading these posts, we need to do so! LOL...

I'm feeling the strain, don't get me wrong, I love being with mr. nicholas all the time, but and maybe even joining a support group where you need to get outta the house to have real conversations and it would be good...we'll see...honestly I think I have the seperation anxiety issue too Kristi! LOL...anyway like your ways to make some me time...especially liked the pedicure idea lol...sounds really good right now!
hugs
Ali

Having time for yourself, even w/ NT children, is difficult. But I do feel what you are going through sally. Even though ds isn't dx'd, and whether or not he has any disorder, he takes up so much of my time.

Today he just wanted to throw tantrums all day for no reason I could figure out. If I offered him anything to calm him that usually works he just screamed even more. I offered him a juice box that he really likes and he just smacked it onto the floor and screamed. I really hate it when I just don't UNDERSTAND what is wrong! So I understand feeling busy and overwhelmed and running your life around your child.

Even arranging outings is so hard, with any young children, but especially if they have any special needs. No matter where I take my son I end up exhausted and sometimes even frustrated. Like today. Sigh.

But you just have to find YOU time somewhere. With me, I take a bath and do facial and pedicure for myself every thrus night around 9:30. Dh finishes the kids nighttime rituals so I can have that time. Unfortunately, most of ME time comes late at night. So I find myself getting comfortable and watching a movie until 2am. I work 5-11pm 5 days a week so I'm w/ kids all day, then work, then home late. Sometimes dh will stay up late w/ me to spend time together even though he has to get up early to work. And we really pack in good times together on days off. It's hard, but you have to work it in sally. I'm sure your dh will agree and help you. If he's anything like mine, he'll shove you into the bthrm to take your bath even though you keep trying to do things lol.

Amber

i have in-home support but that'll be ending very soon because our in-home girl has not been reliable lately and i think something bad happened when she had my daughter on monday, but she wont tell me what.

i've been trying to get respite care for quite some time but am always denied with no explanation given. it would be nice to have respite care, even for one day a month, so i can have somewhat of a social life. my friends have given up on me.

my daughter starts summer school on monday, so thats always a good break. it gives me time to get my house cleaning done, since i cant do it with my child around.

my daughter has also been having a bad week. acting strange, tantrums, screaming for no reason. and her chewing has gotten worse. its like she's so angry and frustrated but cannot tell me why. something must be going on this week.
How did you get in-home help? Do you pay for that? (sorry, don't mean to be nosey, but oh my, that sounds nice!)

Nikki try this..... http://www.respitelocator.org/searchStates.asp  ** NOTE this lists all states

Also call your local MR/DD school and ask to speak to family services I believe its called. The might have funding available . Your boys would have to qualify through the CO EDI, but then you would be eligable for whatever amount the fund per fiscal year to use whatever way you need for their care, respite, siter, adaptive equipment, etc.

If you want help PM me I will see what else I can find.

Also try the (state specific) Yellow Pages for Kids with Disabilities    http://www.yellowpagesforkids.com/help/states.htm

I to suffer from not getting any time for myself. I work part time but my wonderful boss allows me to bring megan to work, has since she was born. It eliminates the daycare bill and I dont have to worry abotu appropriate care. Untill she started the schools preprimary program i had not a minute without her. So I sure get this. As for friends I dont have time period. I have one friend i have had since college who is single no kids and she sticks by me and she visits maybe once a month or so. She is a sweet christian lady with a heart of gold. I thank god she hasnt dumped me as I cant find time to stay in touch on my end..

If it wasnt for my future mother in law i/we would never get a break!! But even at that its only every now and then! my fiance works midnights and sleeps until 2pm sometimes its even later! i take veroniqua with me almost every where i go! She is going through a stage where if i walk outside to smoke a cig. she will scream the whole time! Lately she has been screaming and tantrum crazy! No matter where we are she will start crying and screaming! With her not talking we never know what is wrong! I hold her when she cries and actually wants held and brad tells me i am babying her! He has a hard time understanding alot of the differences from when the other girls were her age and her! I do try to set a little time to myself to read at night! I found picking up a good book and a hot bath does the trick on so many nights!

It must be the moon? My ds has been the same way veroniquasmom. He has been constantly tantruming and screaming for no reason the last week or so and I'm losing my mind!

Amber

Actually it is not a full moon yet.  Could be weather related, don't know.  I know I have pca services and overnight respite care for the breaks.  And of course since I am having major behaviour issues with Jeffrey, I can get more overnight respite days.

Tammy

A break? Whats that??? when my daughter was diagnosed, my case manager came to my house with a list of services and said "pick whatever you want!!" in-home was the only one that appealed to me, so thats what we got. its been GREAT up until recently. i do not pay for it. i get detailed statements from the state telling me what they are paying the agency, and i'm SO MAD because the quality of in-home i'm getting is not worth what the state is paying! i feel horrible about it.  It's definitely tough getting a break from all this.  I'm a SAHM as well and the friends with kids I have all are busy taking their little ones to zoos and museums this summer --places Luke would get nothing out of except some good space to run!  We have no family in the area either.  I spent a lot of time researching and worrying the 1st few months.  Now I just worry.   Am still trying to get Luke's therapies arranged to where I feel he's gettiing enough.  Today am meeting my dh for lunch (with kids in tow) and he's a really good respite for me.  He keeps me laughing and he tries to keep me optimistic.  We joined a parent support group (for parents of autistic kids) and that has helped a LOT. I have trouble taking breaks from my Jo. I'm always scared that she'll need me. It's not that I don't trust anyone. It's just that they can't understand her the way I can. What if she's scared of something and can't convey it right?
I rely on my dh to take care of her when I need a break. But I don't like to leave her very often. She doesn't have any seperation anxiety, but I sure do.
Once a year, my best friend and I spend a day at Six Flags. We talk about making it a weekend trip, but I don't think I could leave Jodie that long.

Kristi


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