BBB AUTISM

(Real Stories from Real Parents)

Goddess_80:

"How do I cope? Well, I have a wide variety of things that I do. With dealing with autism, and the GFCF diet , our budget is MORE than limited (more like there isn't one. lol). SO whatever I do, its done with a frugal mind .
First off... I like to take LONG drives. Since I have just moved to New Hampshire about 3 1/2 months ago, there is a lot of territory that I have yet to cover. I grab my CD case, and get in the truck, and just drive and drive.. singing to myself, and clearing my thoughts. That's my FAVORITE thing to do.

Secondly, I keep a handful of friends that don't have anything to do with autism. When I just need to "escape" the autism world, I get together with them. We might just hang out at their place and watch movies, play cards or games, or go out for dinner and a drink.
They KNOW the rule is though, that no autism talk. If they want to know how T. is doing, they can call me at home.. not on our girls' nights out.

Lastly, one thing that I sometimes enjoy doing, is mild hikes or nature walks.

I haven't been able to do that in a while, with getting everything in place after moving, but there have been times, especially when T. was first diagnosed, that I would get so incredibly frustrated with autism. I would question God, why he had to chose ME to have to live with this, why my world was turned upside down, and pretty much, just struggling inside with the WHY ME, why MY son, when all of these other people in the world have "NORMAL" children, and I got "stuck" with the autistic one. I would find that going hiking (not mountain climbing) really help me work out the frustrations, and anger that I had.

By the time I get to the bottom of where I started, I am physically, and emotionally exhausted. But when I go home, nothing in the world to compare to the feelings that come over my body to be with T. and my daughter B. again.

Even with autism, I wouldn't change either one of them for the world."

schnicki:
"When I get stressed, I laugh. I take a moment and look at the situation and laugh. That usually brings me back to realizing that my son can't help what he does and how or who he is."

dialves:

"How do I cope? I have 2 boys on the spectrum and although there are days when it all seems very unreal. The thing that keeps me going is great friends. I have internet friends that are in the same boat and they "really" understand what it is all about...email is very therapeutic for me. I can type my thoughts that I can't always say and that helps, 'just to get it out of my head!'.

My friends that I have, that I see on a daily basis also keep me sane (or insane, your choice! lol) Just to get away from it all, for a little while also makes a big difference.

The information that I get on a daily basis from the "net" also helps me cope because, knowledge is power.

Finally, the thing that helps me cope the most are my boys' smiles and laughter. Nothing beats the blues more than a hug and to see the joy in their faces!

michellemevans:

"Hi I'm Michelle and I have 2 children on the spectrum. When this topic was brought up last week - I wasn't doing too well with my coping skills - I was having a rough time. Over the last few days I have been thinking back to how I coped with Brian (6) when he was first diagnosed. I didn't do too well back then.

I researched a lot (though not on Internet) and I cried all the time. But I didn't give up on him. As I was crying daily I was getting him into services as fast as possible. Didn't really believe the diagnosis for a long time.

Then all things went haywire -- Mom died-and Danny was infant and Brian was picking up horrible habits like biting, kicking, screaming and hurting me every 2 seconds as well as his infant brother and older brother. We moved too - that was stressful but it actually was a blessing in disguise. We got Brian into an amazing school and they worked wonders with him!

During this horrible period I went to shrink and got antidepressant pills and anti-anxiety pills - which have helped tremendously.

I was starting to feel better, becoming more active with autism, and Brian was behaving (for the most part). Then I got slammed with the diagnosis with Danny last year and I swung into action for a second time. I didn't have time to cry or moan -- and I believed that he would be just fine -- had lots of ear infections. Just needed to get him fine tuned LOL.

It wasn't until This year that I finally have come to terms with my kids having autism -- even though I have been dealing with it for almost 7 yrs. I think being on BBB (online support club) helped a lot as well as reaching out to others in NJ where I live to find some friends with similar issues. That has helped me cope tremendously -- knowing there are so many people I can just page or post to just vent!!!! And to get together with for coffee and talking in person.

I also got some help in to take some of the burden off me. I try to get massages once in a while but the tension comes back as soon as I return home LOL. My latest coping strategy is exercising -- walking with my country cds and working out. I am not thrilled with weights but it does seem to get my mind off kids when I am there -- plus it helps when I need to lift my 40 LB Danny off the ground and onto the step for a time out! You would think my arms would be a lot stronger but they are weak LOL.

Last night I finally found my best coping skill - RAQUET BALL. It is so much fun, gives you a great work out and you can Slam out your aggression on the little blue ball. I did this last night and it was such a tension release. (poor ball LOL)

I am trying to do more for ME since I always come in last on the
priority list of life. I want this weight off, I want to get in shape and I want peace. Since I can't have peace at moment LOL I'll take looking thinner. LOL.

Lastly, you need to be able to laugh. Having 2 kids on spectrum is hard
and there are many times I want to just RUN AWAY. But having a good sense of humor about your kids and yourself is so important. What is making you so angry and depressed at the time usually is kind of funny afterwards. And we have a great sense of humor in this family - its something only parents of special needs 'understand'!
Love,
Michellemevans"

elkowen_99:

"I have tried aromatherapy, lavender baths and candles can provide a very relaxing environment. I use a portion of my respite time to indulge in this. I have also taken myself off of caffeine. It was very difficult, but I do sleep better at night. There is a herbal tea made by Traditional Medicinals called "Good Mood" and it tastes wonderful!

I have to be careful because I like all the "bad" coping mechanisms also. Potato chips are a favorite stress buster with me, lol.

One of the most successful strategies I had was vigorous exercise. I would go to the gym and sign up for classes designed to push my body to it's limit. The two best stress busters I found were Tae Bo and Spin Classes. In Tae Bo, I pictured myself as some kind of ninja wiping out whatever was causing my son discomfort. Sort of a live-action Nintendo game, lol! In Spin (cycle) classes, I pictured J. on my handlebars as we raced away from troubles and pain. I could see and hear him laughing and enjoying the rush of the wind! Visualization worked great in these instances.

Respite has been a life saver for me. I am entitled to 2 - 4hr blocks of time per week. Parent relief has helped us out though some seriously difficult times.

I am a big believer in therapy too. Sometimes you don't realize you are spiraling until you find yourself in tears at the supermarket because the last T.V. Guide is gone!"

Rich K:

"My major coping strategy has been to find work I can do from home, so that I can be on hand to help when needed with our son. (It is not easy finding a solution like that, but some companies are beginning to allow it.)"

Sue J.

"I don't know how to cope, really! How could I suggest things?

I meditate when I can. It's kind of like 12-stepping all day long. Or perpetual prayer, on the good days. Occasional reverse-time-outs on occasion, and regular time outs the rest of the time. Quiet rooms help in meltdown. (For everyone, really! Try it when you're stressed out sometime. For that matter, try flapping your hands for 5 minutes. It actually feels pretty good. LOL!)"

note: Sue later asked me to add laughter, to her coping strategies. This is one way many of us seem to cope!

The Ten Commandments for Parents of Handicapped Children

1. Take one day at a time, and take that day positively. You don't have control over the future, over today, or over any other day, and neither does anyone else. Other people just think they do.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author Unknown