How to cope with raising children and keeping up with the housework?

Michelle - posted on 04/15/2010

I don't have any children with mental health issues but the are very active. They need my attention all the time! But we do keep a tight schedule as far as meal times and nap times. I sleep when they sleep and it helps with the pain. At 4 my son started to get "chores" like bringing his and his little brothers laundry downstairs.

Kellie - posted on 10/30/2009

Hi Sue, thank you for your reply. I can identify with everything you said. At the moment i am back on prednisone as I was finding the slightest movement was causing me a lot of pain. Hopefully I will only be on it for 10 days and when I come off them things will be much better. I don't know about you, but I find that the weather changes have a substantial impact on my joints. I have taken my 4 year old to a pediatrician and seems to think because she is bright she is getting bored and is ready for school, which she will start in January. I am trying new behavior management strategies which seem to be having some success.

If I sit down during the day for any more that 5 minutes without actually doing something i fall asleep. Night times are the worst for me, I have had problems with my sleep pattern since i was around 13. But these days my lack of sleep is because i am sore and cant get comfortable.

I agree that school holidays - especially the longer ones can be a challenge with my 3 kids. I tend to push myself to try and get them out of the house for a few hours every second day or so, even if it only means that we go to the park on the corner, to keep them from feeling housebound.

Thanks again for your support. It goes both ways, if you ever need to whine, talk, ask a question.. or just talk or cry on someones shoulder please feel free to contact me. Once again Thank you, it is good to know that there is someone out there who is experiencing what I am. Have a fantastic day and try to keep smiling. Kellie

Sue - posted on 10/29/2009

Hi Kellie,,, I can so relate to you. I am a 53yr old raising my grandson (8yr) for the past 6yrs who like your daughter has Aspergers, and ODD, OCD and is a handfull. Stress, pain pills and feeling overwhelmed is doing you more harm than good and thats why you feel like your at the end of your rope some days.

I wasnt diag with Lupus SLE until 2005 although I know I have had it since I was 13. After loosing a job of 13yrs due to the company closing, finding out my daugher had a drug problem, my mothers death all in the span of a couple of months,,stress brought me into a really big flair and I worke one morning and couldnt move. Husband had to get me out of bed dress me and take me to ER. I was lucky and got into a really good Rhuematoligst fast, was tested and retested and then put on prednisone for 6mths, big weight gain, a round face and depression were the side effects for me. Once the joint swelling was down, I was taken off the prednisone, and was put on Methotrextate 9pills once a week but I am now down to 7 pills once week. It has been wonderful for me, no flair up since and besides some minor pain (that I can handle without pain pills) i feel pretty good. I have anticardiolipin syndrome as well and am on blood thinners to avoid another blood clot in my lung(which almost killed me), Raynauds Syndroms and Sjogerns.. well I could go on but I wont. I wont take pain meds even at the worst of this due to dependancy and addiction worries,, tylonol was the strongest I would take. Next time your into your Rhuemy talk to him about trying Methotrextate, I promise you wont need your pain pills..

I cut out all white foods, bread,rice,potatoes,sugar and red meats,,it has helped a great deal with the joints and the weight. I have to take care of me so I can take care of everyone else that needs me and your in the same boat. Sometimes we may wish the boat would sink with us in it, but tomorrow is always another day... I had to get my grandson into counseling which helped alot!! His meltdowns use to wear me right out, my husband would come home to find me crying on the floor right along with him...lol

I wonder if your 4yr old has been analized for having aspergers as well? It can run in families and there are different degress of this disease and although some people would like to blame it on disappline..and lack of parental control.... children with aspergers may act like a child who needs a good azz whoppin but really their meltdowns are due to not knowing how to react to their feelings.. some of which are frustration, fears etc.. I have found that sometimes distracting a child in the midst of a meltdown can work better than (trying) to sending them to a time out or talking to them. Just a suggestion but maybe you should have her checked out..

I dont have a problem sleeping, I fall asleep with the remote in my hand in the middle changing channels on the tv..lol Fatigue is my biggest complaint with Lupus. I usually have to go to bed right after when my grandson does or get an hours nap while he is in school. Routine, routine,routine is the only way I have found to work with a child with aspergers so I keep my sanity. Every hour is assigned something, he hates change, new things,,, summer school breaks are difficult for me.. how about you?

If you need to whine, talk, ask a question.. or just talk or cry on someones shoulder, let me know and I will message you with my email. I care and know what your feeling...~Sue

Kellie - posted on 10/27/2009

Hi Nicole, your bluntness didn't offend me at all, in fact, i appreciate it. Your children sound like wonderful little people, it bought a tear to my eye. Its funny though because the way you described your children is the way my mum raised us (mum has SLE). You are right about my 4 year old and i have been trying lately to keep her busy helping me and having firmer boundaries for her. You are right about stress making things worse and at the moment things are certainly stressful. I try to think of the little things that minimise stress, and some days i get thee some days i dont. My doctor put me back on steroids yesterday, which initially i felt a little down about then i thought about it and the positives. Which means for the next 10 days my symptoms are going to be eased and i can use this time to catch up and get everything back on track. Thank you so much for replying to me. I appreciate you honesty.

Nicole - posted on 10/27/2009

Ok, I pray my bluntness doesn't offend you, but will just say what jumped out at me when I read your post...STRESS! Stress makes our disease worse. period. The 4 yr old needs discipline! I know it's hard when you can barely keep up some days, but on the days you're down, it's especially important to getting better. You know your child...give her responsibilites to help care for you(?) Sometimes active children just need to have more constructive options...keep her busy working with you...fold laundry together, clean the playroom together...I can't say its the answer but it worked with me. Both my children are awesome caregivers! (they are 8&5) On my days when I can not even walk w/o assistance, my children are right beside me to help out. They know our routine, they know what needs to be done, and they do their part to make it right. NO my children are NOT slaves. But they ARE responsible, caring, and beautiful people who I am so blessed God put into my life. Disease affects the whole family, so it works when the whole family is a team that works together. I can't tell you how amazing it feels when my children know I'm down n out for the day and just automatically kick into gear!! My heart just grows with the love they show me, and tell me it's because of all the times I take care of them, that makes them want to help me when they can...oh, that comment that day made me cry!! :-) Talk with them, ask for what you need and what you can do for them...communication can't hurt!

I don't know the answers for everything, but know this worked in my home/life!! I hope this was helpful and not hurtful! You're not alone...so many feel the way you do...even with all the help, I too wish I could just sleep for a week too!! Wishing you the best! Blessings! Nicole mom of 2 enduring MCTD-Lupus, UC, Fibromyalgia