Any Mum Dads ect with chronic pain and have children with ASD ect?

Jessica - posted on 07/26/2012

omg do i understand,i have an 13yr old that is PDD/NOS and i also have Fibromyalgia,osteoarthritis,chronic pain and nerve damage from a spinal fusion in 07.I also have a 10yr old boy and a 12yr old daughter and my husband. We are having such a hard time with no help from no one for are son plus my chronic issues.I am in so much pain and dont drive so its all on my hubby most of the time.And the fibro fog is the worst i am 33yrs old and feel as tho i am much,much older.I already carry a cane when needed.Also i have major sleep issues where i go to bed soooo tired and dont sleep not even with sleep pills.So i had sleep study and he said its an issue i cant fix!! No one understands besides kids and hubby.They judge me for my sleep patterin cause ill fall asleep around 6am and wake up on and off through out the time sleeping and wake up around noon....it sucks i do not intend this @ all!! Its nice to talk about it tho!!!Thanks for your post...

Jennifer - posted on 07/14/2012

Hi Hannah!
Yes, I have a 12 y/o Aspie daughter and I also have Multiple Sclerosis with Chronic pain. I completely understand how you are feeling. I have a wonderful husaband, who on the days that I "just can't do it" will do it for me so I can rest and get to feeling better. I also have this wonderful Aspie daughter who understands that her Momma has a condition that affects how I feel sometimes and when I am "sick" I need her to help and she is very responsive to helping me around the house and even to the point sometimes of playing "mommy" to me....getting me a drink...wet washcloth...lol. I just love the support I have, but I do also feel guilty ...especially in the summer when my symptoms worsen with heat and I am unable to get out of the house and that seems to be all she wants to do that day is get out!! It really does get better...symptoms don't go away but they really do learn to adapt even better than we think they will...Children are very resilliant.....!!!

Debra - posted on 07/10/2012

What country do you live in? I'm in the US (Houston, TX) and developed Fibromyalgia shortly after I (a young childless widow) remarried and became full-time mother to what we thought was a 16 year old AD/HD & OCD boy. Turned out to have multiple issues one of which is Autims/Asberger's and at 18 years old and 6'1" tall, could not be left alone - not even in another room of the house. I thought I had RA and had an aunt die from that. Scared, I went for testing at the hospital two blocks from our home - in the early afternoon so I'd be through in time to meet Kyle's bus. He didn't call as usual when he got off the bus. He didn't answer his phone when I called several times. I called his only friend who rides the same bus. His friend said he told him that his parents weren't home and he had to come over to his house to play. But they were leaving for dental appointments and told Kyle he couldn't come over. I had left him a note on the door to say I would be right back and for him to go inside and wait for me.I called his friend again to ask if he saw Kyle walk back to our house. He said that Kyle was standing in their front yard - just standing there. I called Kyle again - no answer. He was gone. His friend said they'd cancelled their appts and were driving around the neighborhood looking for Kyle. He stopped by the house and rang the bell several times just in case he went back there - but got no answer. I left the hospital before getting my x-rays and rushed around the corner to our house. I ran through the house calling his name. I rushed upstairs and as I turned down the hallway, Kyle walks calmly out of the bathroom with his robe on. "Where have you been??" He starts making up a scenario and said he took a shower. I told him to hurry and dress so he could come with me back to the hospital for x-rays. I walk into my office quickly to check email and see there is porn videos running and downloading onto my business laptop. And it's obvious he's been sitting in my chair. I was so overwhelmed that I had to just file it away for later so I could handle the stress of my own diagnosis. While I am in the back changing and getting xray'd, I am concerned that Kyle may wander away from the waiting room area. As soon as I was finished, I went to the dressing room and see Kyle standing up next to the wall peering at the ladies undressing for their xrays. OMG! My diagnosis: full blown worse case of Fibromyalgia and extremely bad case of Granuloma Annulare - a disfiguring skin disease that looks a little like ring worm but cannot be cured. Both of these brought on by extreme stress. It is advised to remove all the stress from your life with these diagnoses. My rheumatologist said get out of that marriage before it kills you! I went home and cried. My health has gotten steadily worse with time. Kyle is currently at a MR facility for a 30 day probationary stay. I thought it would be less stressful, but learning that the staff stresses to the 18 and older residents that they are adults and can do what they want...even give them condoms... ! I know it's the safe and proactive thing to do. But my son has all the desire and none of the ability to understand the consequences to sex. The nausea and chest pains are back again...

I don't know if you have these drugs in AU, but Lyrica and Tramadol have given me relief. But if I miss a dose or even if I don't I wake up and can hardly walk, bending my fingers is painful..Kyle has been very sweet and understanding when I cannot get out of bed to help him get ready for school. And when the meds or disease? make me short-tempered and grumpy. I will send prayers and healing energy your way. Meditation and yoga, light exercise is supposed to help. Watch your diet and check for nutritional deficiencies. All of this can be found on google searches. All the best to you, your partner, and little James. I don't know how your government supports special needs, but I've learned here in the US to get firm diagnoses, document everything, and be persistent to get the services that your special needs child requires. Take care...and remember what they tell you on the airplane: if traveling with a child or loved one who needs assistance, secure your oxygen mask on first, then assist them. In other words, if you don't take care of your health, there'll be no one to take care of your child. :)