Living with autism is hard work.
Living with the complex and often contentious world that surrounds autism is harder.
Addressing the subject of autism in a public forum is even harder.
All that is nothing compared with the red tape, the misconceptions, the high drama and the angst that confronts parents and adults with autism every single day.
Once, a few years ago, I suggested that we all take a "day off" from autism, and simply enjoy our children or loved ones on the spectrum in a setting that makes the most of their abilities and joys, and minimizes their challenges. A day at the beach, I suggested, or even a few hours at a park, in the woods, or anywhere that's delightful for the whole family.
Back then, I was immediately quashed: "no one can take a day off from autism," I was told.
Perhaps it's time to make the same suggestion again - at the risk of hearing, yet again, that autism can't be set aside, even for a few hours.
If you're a family with an autistic member, an adult living with autism, or the partner of a person on the spectrum, consider the possibility that a few hours away from the computer might not be a bad thing. And a few hours in a setting that maximizes joy and minimizes anxiety, embarrassment and angst might be an even better thing.
Just a thought.
Lisa
But what of the parent on the edge, ready to go over? What of them? How do we help and reach them? This is terribly worrisome to me….
“a few hours in a setting that maximizes joy and minimizes anxiety, embarrassment and angst”
Hear, hear! Three cheers! I second that emotion! Autism or no autism — living life, in this crazy interesting stressful beautiful silly world.
I believe that taking a day off is important. Not just for us, but also for our child. A day at the beach or a weekend camping does it for us. Camping is great, because my son can do whatever he wants. It’s calm and quiet. No one around to judge. No tv, computer, only a radio. It’s great.
The “day off” comes from within the parents’ mind. We are always planning, worrying, thinking, avoiding, facing hard truths… These are exhausting on top of the outward physical / worldly energy expenditures.
I think the only real ‘day off’ could be stopping the tape playing in our heads for a few hours at least. Just stop and BE there with your child in all his/her wondrous/horrible/confusing ways. This will help you to remember why you are putting yourself through this life that sometimes does feel like hell and hopeless. If you’ve had improvements, truly acknowledge them and be grateful.
Love to all in this soup!
I completely agree with you, Lisa!
Although, as parents it’s almost always impossible to allow our minds some “down time” from Autism…
It is ESSENTIAL. And it is possible. You need it as much as your child does. We cannot expect our children to not dwell on their “problems”…if we aren’t capable of it, ourselves.
Also, as a parent…forcing yourself to not think on all the “autism issues” for just 1 afternoon…fills YOUR cup back up. With out this, our family suffers. Especially the child we do all this “thinking” for.
Over the past 10 years I have been on both sides of that pendulum. It is never easy. But with practice and determination it does get better (the ability to” take a break from autism”).
And remember, it isn’t a BREAK from Autism, where the world revolves around you….if that is what some are struggling with.
It IS a break from autism, as a FAMILY. Very important.
All 5 of us, my husband, 3 children and I all go to the park for the afternoon…at least once a week.
We try to go to the beach for the day, at least once a month.
David (my 9 year old who is high-functioning autistic) finds this to be the best way for him to take a break from all the day-to-day stress that come with this disorder.
There are 2 sides to what you say: First, we all need a break now and then and no question, without time off here-and-there I truly think there is a point of burnout when it comes to the rigors of therapies, schedules, routines, whatever. Second, even when you take a day off to go to the beach (or for us tonight the bowling alley) there is still quite a bit to think about in preparation and then quite a bit to do when you get there (at least this is true for us). So even though you’ve essentially taken a break, autism never goes away.
I am glad that you posted this. We spent 2 years working…panicking in a sense…feeling like we were going to lose him if we didn’t do it all and do it now. We had therapies, books to read, lots and lots of work and some chaos at home, no sleep at times, a child who used to “escape” and then we put him in school for a year and battled the “process” of IEP’s, implementation, trying to communicate with school staff, and it seemed to go on and on. I did burn out. At the end of the school year, the school did not “recommend” my son for therapies over the summer because they said “no regression” and I was done. If he didn’t need ANY services in the summer…then what on earth was he doing in school? At the risk of giving some readers a heart-attack, we stopped all services for 6 months and worked with him at home. The pace stopped…no more driving, wondering, worrying, etc. We taught him to dress himself, his ABC’s, shapes, colors, 95% of toileting skills, and so much more. After we rested, we did go back to private therapies and it did help us.
As far as a “few hours away from the computer” I have to assume Lisa, that you are talking about me, LOL! I hate to say it but this computer is my refuge…my sanity…and some days I am here more than others. But you all help me in ways you will never know.
I think this raises the question does autism actually run 24/7, and if the whole family goes on an outing like to the beach, wouldn’t autism still follow? It all depends on the age of the child with autism. When my son was 3 we went to the beach, never did that again until he was much older. The park at a young age was no fun, either.
My question is, why not on a daily bases find ways not make autism so much a part of it, and let the child be a child? After all, the child is a child first. Why does it have to be a special day to take a day off? I spent a lot of enjoyable hours sitting with my son and watching his favorite DVD’s. I spent a lot of time in my own yard chasing down my son, but letting him play in the ditch after it rained, autism was no where in sight and my son could had been any boy playing in that water. Jumping with him on his trampoline, autism was left at the mesh screened door.
If one has to make a special day to take off from autism, then people really could be missing out on a daily bases the joy of a child who has autism.
I think it is a good idea for parents to get a break and for society to provide the support they need to do so.
Parents can get a break but for those with autism there is no break just good days and bad days and days that are a bit of both.
Great idea- we all could use a break
conversations and actions are 24/7. would love to see that day but it just doesn’t touch reality.
I take my boys (one of whom is on the spectrum) to the beach every second day!
So far the only ‘medication’ I’ve heard of for Autism is anti-depressants… well, what better anti-depressant is there than doing something that the whole family enjoys?
Not only does your child have a great time doing it but ends up doing better for hours later as well… a general feeling of joy and happiness carries itself forward for quite a while after.
I think people mistake “day off” with dismissing.. it’s not dismissing it, it’s engaging it.. in a very positive way.
Thanks, Stuart! Yes: my point was that it is almost always possible to take time off from worrying about autism, fretting about differences, and cleaning up messes.
By bringing our child with autism into a situation where he/she and you are happy and comfortable, autism ceases to be an “issue,” and you’re freed up to just enjoy one another’s company!
IMO, while autism itself can be very difficult, the red tape, judgements and anxiety can be even tougher.
Lisa
We’ve gone to Disney World with our family (including our son with ASD) once a year for the last few years- it makes him incredibly happy (he loves fast rides!), and we can be like every other family for a few days (especially with some advance planning and lots of research!) Our extended family thinks we’re nuts, and everyone thought it would be over-stimulating the first time we went, but we’ve actually found that he’s always really good there. And yes, it’s a chance for all of us to take a break from the therapies and interventions!
I agree completely. My son and husband are both autistic, and we have a lot to deal with on that end. However, there are times when we are able to put it aside and just be a family, not a family with problems. Those are the best times!!
I have learned to take my son to the zoo and the beach. What fun I had and I am learning his learning style better with these outting. I am lucky to be his mom.
Some of the most successful families I know are those where both parents either work or pursue outside interests. Several years ago I didn’t think it was possible because the majority of parents I was exposed to online seemed hopelessly drowning in autism. There was one mom, however, who retained her job, interests, and humor, while raising three children including one with autism, and she became my idol. In addition, I began to study families in my community and was impressed at the full lives that seemed to take autism along for the ride without letting it steer the course. I’m really glad I jumped on board that train!