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I have been looking for a chat room with other parents with disabled children to chat with but have been unsucessfull. I have two beautifull daughters who are both disabled. I could go on forever talking about what we have been through in the past nine years but I will try and shorten it up. My oldest daughter is nine and my youngest daughter is six. Through the years I have given both of them cpr a couple of times and we almost lost our youngest daughter twice due to illness. It has been tough, tougher than I have ever imagined. For the last several years I have suffered from depression but I try and hide it from everybody and refuse to bring my friends down by my sobb stories. My wife suffers from depression and takes meds which seems to help most of the time and I try and be supportive of her and fear if I show her my weekness that it will make her depression worse. My concern is my health. Lately, last couple of years, I have really felt the stress from my childrens behaviors, outbursts, and health problems pay a toll on my body. I have felt sick and my body hurt all over. I sometimes feel that I wont be around for my children and my wife when the get a bit older because heart attacks and other illness that have taken some of my other family members who havent been through what I have. I guess I was wondering if this is normal, if any other parents with children who have disabilities have ever experienced this and if anybody has any tips on how to deal with this better than I have. I have also been drinking alot more. I do have much more I would like to get off my mind but dont have time so if anybody knows of any good parent with disabled children chatrooms or online therapy groups I would love to hear about them. Thanks for reading.
I am sorry that I do not know of any on-line groups, perhaps some other parents can help you.
Have you tried to find any local support groups that you can attend? Perhaps a group that specializes in their particular disability. Ask your children's special education teachers, pediatricians and other doctors for referrals or suggestions. Go on-line and search using a variety of phrases to find what you are seeking.
As a retired special education teacher I can tell you that it is not unusual for parents of special needs children to have physical problems, stress and depression. Thankfully those problems can usually be treated and improved. The best thing that I can recommend is for you to take care of your health so that you are better equipped to care for your children.
I am a strong believer in respite care and getting extra assistance if needed for your children, whatever their age. You didn't go into detail about your daughters needs or disabilities but think of it this way. Most parents can remember how physically demanding and stressful it was to have a new born baby. Sleepless nights, endless demands on your time and often you weren't sure if what you were doing was the right thing at the right time. Mothers who breastfed their infants often were physical and emotionally drained as well as being sleep deprived.
And of course, you still had all of your normal work and life responsibilities to deal with but you knew that in a few months it would get better, your infant may sleep through the night and become a little less dependent on you. And if a few years it would get even easier.
Well, you have had nine years of extra physical demands, sleepless nights and endless demands of you time. Of course, you may feel worn out and exhausted. Sometimes just acknowledging that fact may be helpful. Sometimes, extra help is needed.
When is the last time that you and your wife had a real vacation away from your daughters, to "recharge your batteries"? Or even a night or weekend to yourselves? Maybe that is what you need or maybe something else. Be honest with your doctor and with your family. Ask for help when you need help.
I also have two kids with disabilities and worry about my health sometimes. A big lifeline for me has been a Facebook group of parents of kids with the same diagnosis. Sometimes people use it for much-needed vents but a lot of the time we just chat or joke about things we go through. It is such a wonderful resource! I hope you can find some kindred spirits.
I know his you feel, Steve. I have two children with disabilities and it can be tough in so many ways. I have found some support for one of the disabilities through a Facebook page. The other disability is more isolating but my child goes to a camp where she meets others in her situation and whenever I see the parents at drop off there is a nice exchange between parents. There are also annual events that we have attended and we will get out to more events in the coming years. It is stressful and I have found yoga to be very helpful in so many ways. I always have to remember to take things day by day but that is easier said than done. There are support groups for so many of us... we need to reach out. I am glad you are reaching out.
Yes, I think what you are experiencing is quite normal. Here is one website that has some information that may be helpful. It provides information on resources in particular states for particular disabilities:
You may also be able to get information from your local school or your local hospital. Our local hospital has a support group for parents of children with particular medical problems. You also can google whatever disabilities you are dealing with. I spent many hours on one forum I found when I was concerned about some unusual neurological symptoms my daughter was having. This was really helpful.
Hang in there. I think it is great you are such a caring Dad for your little girls. I think it may be good to tell your wife too about your concerns. You can lean on each other when you are honest about your shared stress.
Hi Steve, it's been a few months and I just came across this board. Man, I could spend the entire day on here just reading about parenting stuff! I hope you, your wife and girls are doing better and that you've found some support, whether local to you or online.
Parenting is so tough! And I know it's even more so with special needs kids. Have you talked to the teachers, pediatrician, etc? You need help, Steve. It's okay to ask for help.
Do you go to church, synagogue, etc.? Reach out and get help. I know you don't want to drag people down with your endless chatter about the girls, etc., but I bet there are many people willing to help and even listen. You need to vent.
I don't have any real advice, but I just wanted to chime in and give you a pat on the back. Please talk about this with your wife. Don't carry the load yourself. And take care of yourself so you can take care of the girls. It seems like this site has a lot of caring people, so if you can't find another support group, keep posting on here.
Take care of yourself and I'll be praying for your family.
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