How do parents unwind

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Just wondering how do parents unwind, I feel I know my son's primary diagnosis AS and he has other Comorbidity.

Its been a very tiring and difficult road, I am feeling pretty exhausted even thought now I feel I have the answers, maybe not quiet the support our family needs . But I feel I have the confidence to advocate for my son's need around education and so forth.

During and after getting a diagnosis how did it affect you and others, how do you manage and how do you move forward. I am feeling a bit stuck now or just exhausted? I am well passed the accepting stage!

We got the AS diagnosis after 4 years visiting different specialists, basically getting robbed because the different diagnosis were wrong and the therapies and meds did not work. When we finally got the AS diagnosis I felt relieved. Relieved because all finally made sense and our kid was gonna get the right treatment. The person who told us she might have AS started treating her immediately, and we noticed progress in just a few weeks. I did not cry anymore. I stopped receiving calls and notes from her teachers. I stopped worrying about how our child was doing at school all the time. Our daughter has been in therapy 3 years now. I am finally able to worry about the quality of education she is getting. She is even starting to get control of her own education (studying, homework, etc). Getting a diagnosis is a blessing. Now all you need is to get a good therapist for your child. Good luck and God bless you both.

Annamaria
I think it is important for us to find things for ourselves that "fill up our cups". For me that has been learning about mindfulness and Budhism. That may sound strange but there is much that is peaceful and stress relieving for me in the books by Jon Kabat-Zinn and Tich Nat Hahn. I try to find time to meditate and exercise which are good for both mind and body. I say, go to the library, check out some books on a topic you have always wanted to know more about but haven't had time to learn before or just the latest fiction novel you would like to read. Get involved in a group at your son's school or church or other volunteer organization. Do something that is just for you. Care giver burnout can happen to any of us if we don't act a little selfish once in a while!

My husband and I try to do the same little things together that we've always done to unwind, 2 cups of coffee together and tea and cookies before bed. He plays video games and listens to music and I read the news and surf the net and lately I've been making/painting toys for my son (somewhat obsessively but that's the AS in me - my son has classic autism). It's the simple things we appreciate the most.

During and after the diagnosis all extended family members were in denial and while some helped out with material things no one offered their time to give us a rest. We move forward one day at a time and we're always exhausted.

(Also, I was Buddhist long before I had my son and agree with Bombaloo on that.)

I think sometimes you have to remember to take care of yourself, sometimes let other people do things for you. Find a good babysitter or respite worker and go out if you can. I wish I would have taken more advantage of our respite and gone out more with my husband because now I have a chronic painful disease which prevents me from going out much. I have to wait for a good day and then I still cant do much. Our vacation this year is going to be camping on a farm where my kids can play with animals, ride ponies, and play in a stream. I get to lay around on an air mattress or my lawn chair and watch.....for three whole days, wow . I am still happy to be able to do something!

I like Bamboloos suggestion about finding things that really fulfill, and maybe that is why I did way too much PTA stuff for so long ... I was good at it, and it earned me lots of recognition - it was tangible, clear results for effort. But, unfortunately, I let myself become too dependent on the recognition, so of course it either ended or just no longer was good enough, and I got bitter ... So something deeper is better, or just being carefully aware of your own reasons.

Mostly I just do what lilolme talked about, remember that my needs are important, too. Sometimes what I want goes ahead of what the kids or even my husband want. If I need to watch a tv show or read a book to feel sane, instead of doing the dishes, so be it. If I'm not sane, it won't matter how many piles of dishes I get through.

A doctor prescribed an anxiety medication to a friend of mine who has a child recently diagnosed with AS. She says the pills are great because they help her feel more relaxed and handle the tantrums and meltdowns more easily. I do not know why the doctor never prescribed ME pills. I think this is a wonderful idea. We all know how stressful and depressed we can get...

Because it's not that simple, every "cure" has a cost, and you do better if you can manage it on your own without having to pay the cost (side effects, etc). These things are an amazing lifesaver when nothing else works, but good doctors try to make sure you really are at the end of the line, or unable to pull together better options, before they give them out. Once started, meds can be VERY difficult to go off of ... I know your post was mostly wishful thinking, but since I've taken that sort of road, I thought it was important to make sure everyone knew it's not magic.

Thank you for giving me your insight. For a moment I thought it was a GREAT idea, but you are right. Honestly I am not fan of meds. I try to avoid giving meds to my child, and thank God her pediatrician and therapist are in the same page. I just thought that could be a great idea to deal with all the stress related with having a kid with AS. The nights without sleeping (night terrors), the constantly watching (my daughter used to harm herself, so I had to be constantly watching what she was doing), the tantrums, the meltdowns, the fights (oppositional defiant disorder)... I used to feel exhausted, stressed and on the verge of a nervous breakdown all the time. Thank God things are better now.

It did get me through when I couldn't see any other road, and that was important to my being able to meet the needs of my kids. I don't really regret the decision I made, because I wasn't in the right place otherwise to be the best mom for my kids, but I do wish I had been better able to see the costs at the time, and know how many years it would take to change the road once taken, so that I might have had more incentive for investing in a different answer. Does that make any sense?

I read. A LOT. It's how I "get away". Immersion in a fantasy world. It doesn't take much energy and it's not self destructive.

Believe it or not I read a lot of sci fi and horror. I guess reading about catastrophic, post apocalyptic scenarios makes my life seem pretty good in comparison.

I watch TV or surf the internet. Love the gossip websites. Enjoy reading. And really enjoy colouring in my kids' books.

Also like to play World of Warcraft and just do mindless stuff.

Thanks to all for your input and very good suggestions, I have lots of books half read, if I cant finished them undistrubed I prob never do. regarding meds I would perfer not to I have had to resort to them for my children and it has been a very tough decision. As they now are at an age where they can decide we informed/educate them and give them the choice. Still is very difficult to administer

It is always good somewhat to feel you are not on your own, and you can identify with others, at times you can feel its just happening to you!

Thanks again

I read a lot of sci fi too. Lately I've been reading a lot of Stephen Baxter.

I've also been getting back into playing guitar lately.

I got hooked on romance novels after my son's diagnosis. I think it's because life is so uncertain, I really need escape with happy endings.