HOW DO YOU HANDLE THE STRESS?

I love my daughter. But sometimes I just can't handle it. How do you and what do you do? Pam

Hi Pam. I have an 18 year old son with autism and MR. Boy is that a difficult question! For one thing, my husband and I spell each other when we are overwhelmed but often we are overwhelmed together. I don't know your situation but my son goes to special school and has caregivers after school until we get home from work. We have one weekend a month where he goes to respite and one saturday for about 3 hours that we can get out. I have 3 other sons but they are grown. My son talks but a lot is the same phrases over and over. He is bladder trained in the daytime but not bowel trained. He has destroyed his room by taking off his diaper and smearing poop. There are holes in our walls. We have number pad locks on the inside of our house that you have to enter a code to get out because he elopes. Mornings are hell. He hates waking up and showering - too much stimulation too fast. Lots of pinching and hitting. He develped seizures just before his 17th birthday. When he is good he is so precious, very child-like. He still tries to "snuggle" with me in bed and climb on my lap to rock (he is 5'2" and 130lbs. He will eat anything, including his own BM. We are on a list for a group home and they are talking this spring. Part of me says I am ready and part of me feels like I am abandoning him. It is hard to care for him at times and I love him. How can strangers take care of him like we do? Probably my biggest support is my friend who has a 30 year old autistic son. Whatever I am going through she understands and can support and listen to me without judging. I don't know how I would have made it this far without her. No one knows the isolation we go through except another parent of an autistic child. You wrote for support, instead you got a "rant". Tell me about your situation? What is your daughter's level of function? How old? Email me. I am having surgery Monday and we had to figure out how to get someone to take care of him so we could leave the house at 4:30 a.m. My sister is going to take me to the hospital. We got a caregiver to come at 0600 and he will take him to respite camp until Friday afternoon. My husband will come to the hospital as soon as the caregiver arrives. He may miss me before I go to surgery but that is the way it has to be. We had the same dilema when I had an angiogram a few weeks ago. Jan [email protected]

First of all let me say congratultions on your surgery. I will say a prayer that all is well. Faith my little girl is 11 in years and about 7 or 8 in age. Like your son she is as loving as a kitten when she can be. I keep telling myself that if I think it's bad on me just imagine what it is like being her. She is actually asperger (high functioning). She is very hyper and that's where the problem comes in most of the time. We went to a wedding tonight. She was wonderful during the ceremony, then when we got to the reception she was ready to eat the cake and she meant now!!Lol I tried to calm her and to explain to her the order of things but oh no. We finally had to excuse ourselves and go home. Immature on my part I admit but I was a little angry that we had to leave yet another function because of autism. I feel so guilty because I have it better than some parents and feel I have no right to complain. I try my best to not compair her to other children but there again it's hard not to when my niece who is 6 can dress herself completely potty trained and acts age appropriate and my 11 year old can't. I think I am just having myself a big ole pity party. I'm dealing still with the guilt (did I do something to cause this) the greif(what happen to the normal child I was suposed to have) and some days the just plain ole I don't want this anymore. God forgive me. My husband is so good with her. He has the patience of job with her and I don't. How can that be? She is flesh of my flesh. Will it get better with age or worse? We have her in special-ed for math only. She is very smart. All she has to do is hear something and she knows it. Like history, science, spelling but poor baby can't add 2+2. We have her in therapy- one on one and group. I am clueless to what else we can do for her. I have wanted to ask, if she will grow to be a self-sufficient adult one day, but am terrified of the answer. Some days I say ofcourse she will and others I don't know. Pam

I heard a speaker once who said that parents who lose a child, go through the grieving process and get on with their lives as best they can. Parents with a disabled child go through the grieving process over and over and never make it through it. I totally understand your frustration. One on the things I have the most problem with is not participating in normal "family" activities like attending weddings. celebrating an event together at a restaurant, etc. I have tried and tried over the years to make our family seem as normal as possible but then we end up with a disappointing result as you did with the wedding. My husband has finally convinced me that we might as well avoid some events if we don't have arrangements made for Jacob. It made me very sad to have to plan my oldest son's wedding on a weekend that Jacob could have respite care. It didn't seem right that he should be excluded but none of us would have enjoyed ourselves. It doesn't seem at all fair and it isn't! We are getting to the point of looking for group home placement. Part of me feels like I am abandoning him but the saner part knows that he loves the structure and activities provided for him at a group home. He loves his weekend respites and cannot wait to go again. Our weekends with him bore him. Our situation is the opposite. I have more patience with Jacob than my husband but then he has evolved into the primary caregiver which I assume is probably your role with your daughter. I think it is normal to be more frustrated when you are the one directing their activities and taking care of their hygiene needs etc. I don't think anyone could answer your question now about your daughter's future. All we can do is take it one day at a time. Some things get better but then new challenges develop. There is a lot of focus out there now on autism. The resources available now are so much more extensive than ten years ago so who knows what they will come up with in the next 10 years. My sanity has been preserved only through my friendship with other mothers of autistic children. Family members, no matter how sympathetic, just don't have a clue what we go through on a daily basis. The older my child has become the more my family would just soon avoid being with him or hearing about our challenges. Deep down I know they are thankful it is us and not them and then there is some guilt that they don't know how or want to help. Don't know if that helps. Email me anytime. [email protected] Jan

I don't have any autistic children. It is my career to help them and their families. I am 37 years old and have been working with both children and adults with autism. I am no expert. If I can be of any help please let me know. Lisa

Sounds like you need some respite care. Are there any services in your area to provide some help? Do you have family or friends or church group that can pitch in? My son was VERY difficult to handle. There were times I didn't think one of us (not sure which - LOL) would survive it. He is in a residential facility now - thankfully we BOTH survived the years he lived at home but frankly, I'm 'scarred' from the stress. Dont get me wrong, I love my son to pieces - he's the biggest 'mommys boy' you've ever met, I made sacrifices (and still do) for him I didnt think humans were capable of --- but 24/7 x 14 yrs of him tearing the house up, smearing feces, having temper tantrums, not sleeping for DAYS at a time, etc - can cause some MAJOR damage to a 'psyche'. About the time he was 4 yrs old I started taking an antidepressant and I STILL do (he's 23 now). WHat is it war vets have --- post traumatic stress disorder? Im sure thats me too. I dont want it to be you - get some help! By the way, I was a single parent - if you are too - all the more reason you need some assistance! Good luck! ~Robin