Tuesday, November 22, 2016

Autism Parents: Things Are Gonna Get Easier











I wrote a post yesterday called "I Still Yearn For a Typical Life Sometimes".  In it I talked about even though I’ve been living on Autism Avenue for over 11 years now with my 13 year old son, I still can get in a funk and get depressed "big league" :-) but in that post I wrote …

But I swear I've been better these past few years... I rarely get in funks like this much any more. 
In fact at the beginning of this month I was going to write a post about how people always told me that things would get easier as my son got older, and I never believed them, but things do get easier... and living this special needs life does get easier the more years into it you are... 
So this is that post.

When I do my Autism Daddy speaking engagements around the country, inevitably during the Q&A session an autism mom will ask “my son is bouncing off the walls from the minute he gets up in the morning to the minute he goes to bed at night.  I don’t even have time for a shower most days…  How do you and wifey do it?  Does it get easier?”

And I usually ask “how old is your kid?”  Nine times out of 10 the answer will be between the ages of 5 – 10 years old.

And I’ll say “Yep those were the rough days in our house too.  Thing were a lot crazier when he was that age.  And people would tell me that it gets easier as our asd kids get older, and I didn’t believe them, but I’m here today to tell you that it is true.”

So I’m here today to explain that in further detail.  And when I talk about things being easier, I am selfishly looking at this from the parenting perspective, not the kid perspective.  So as you read this, please remember this is about being honest that being a parent of a kid with autism or any special needs can be difficult… but things do get easier…

 I started this blog when the king was 7 years old, and boy he was a handful!  And the blog post that best expresses what it was like living in our house back then is "50 Things Overheard at My Autism Household on a Typical Weekend"  

If you want to get a sense of what it’s like with a kid who is bouncing off the walls from the minute he wakes up to the minute he goes to sleep, I beg you to read that post.  Back then it was truly “all hands on deck” parenting.  If I got stuck in traffic on my way home from work I’d get a text from wifey saying “how far away are you?  I’m going batty over here pulling him off of the furniture!”

And if that wasn’t bad enough right after he turned 8, we entered what I call on the blog, “the summer of rage”.  The summer of 2011, the king was filled with rage.  Self-injurious behavior, hitting others… He was miserable for big stretches of every day and just seemed uncomfortable in his own skin.  If you go back and read the blog and FB page from around that time, it was all pretty dark.  I remember somebody commented “don’t you post any positive stuff?”

But that was just what our lives were like back then.  And people with older ASD kids would comment, “I know it’s hard, but it does get easier as they get older…”

That summer of rage, the summer of 2011, when my son was 8 was probably the worst stretch we ever had as special needs parents.












Well fast forward 5+ years to now, and I can honestly say that things did get easier.   We’ve got a pretty mellow 13 year old on our hands.

And these days, even when he’s not mellow and has some rage episodes, or zany behaviors, it’s not nearly as bad as it was years back.

What happened?  How exactly did things get easier for him and for us as parents?  I’m not entirely sure.

 It wasn’t like we flipped a switch after that summer of rage and things were significantly better.  Things got easier gradually.  In fact, if I didn’t have this blog to look back and remember how insane my household used to be I’m not sure I’d notice how much easier things have gotten around here.

And let me say straight away, things didn’t get easier around here because my son made significant progress in his cognitive development.  I know a few kids who were in my kid’s class when he was 6-7 years old, who have gone on to be somewhat mainstreamed or in integrated classrooms.  So I’m sure their parents would say that their lives got easier because their kid made significant progress.  So if you have a kid in that age range now, that hope is absolutely still out there for you… but that’s not what happened with our kid.

My son still has severe autism, is still nonverbal, and is still in the “low functioning” / some would say “most restrictive” school environment in an 8:1:1 classroom.  He also now has epilepsy in addition to his autism.  (he had his first seizure at age 9).

So again, what happened?  Why did things get easier?  Well there's 5 things that I think made the difference with our guy, and for our parenting sanity.  Not saying this will work for everyone, or will apply to every kid, but this is why I think our lives are easier now…













1) in the beginning of those crazy days the king wasn’t sleeping well and would be up and down all hours of the night.  Wifey and I would watch him in shifts and I would go to work some mornings on 3-4 hours of sleep.  Sleep is important for your kid, it’s important for your sanity, it’s important for your marriage.  So somewhere in there we discovered the magic of melatonin, and it has helped his sleep immensely…. And you could say that it restored our sanity…

2) During the summer of rage we bit the bullet and put the king on medications.  As I said he truly seemed uncomfortable in his own skin.  It was pathetic to watch.  So with the help of a pediatric psychopharmacologist we got him on low doses of two scary old school meds and they helped him immensely.  They got him out of the summer of rage, and back on the right track

3) Time, maturity, slowing down, and being more comfortable in his own skin.  I said earlier that the king maybe didn’t make much cognitive progress in the past few years… but the progress he did make has made parenting him a lot easier.  He has just slowed down quite a bit.  He has become quite a lazy teenager.  Back during those rough times when he was younger I would have given my left arm to have him sit on the couch and watch a 30 minute tv show… but he was too hyper and would bounce off the walls and would walk from room to room while the tv was on.  Now, we can’t get his lazy ass off the couch!  He can watch a full 2 hour movie, often times while also playing other videos on his iPad :-)  That’s the kind of progress we have in our house, but it does make parenting him a lot easier…

4) This 4th one is maybe the most important one.  I think wifey and I have learned to roll with the punches better.  To try and live each day as it comes.   And in a strange way, when the epilepsy and seizures entered the picture I think it made us not worry about the autism as much anymore.  Once we also had epilepsy to fight, I think we gave up on expecting miraculous progress and maybe we slightly lowered our expectations on what our kid is capable of.  All of that made the day to day stuff easier to deal with.  I think wifey and I have also gotten better about being more selfish and taking care of ourselves, and making ourselves happy.  I might write a separate blog post about this soon, but wifey is currently living out her dream of being a singer of a rock and roll cover band.  And I’m enjoying my weird Autism Daddy celebrity status and am loving doing public speaking.  All this to say that we are trying harder to make ourselves happier.  And I think us both being happy and fulfilled makes us better parents… and I think that our son can feel that.

5) I don’t know if wifey would agree with this one, but I think parenting our kid has gotten easier because for me because I am not comparing our situation to others as much.  We are not around typical kids the king’s age as much, so we are not coming face to face with what “normal” parenting is like that often.  We are just living in our little special needs bubble, and taking each day as it comes.  Every once in a while I will come butt up against how different our lives are, and how much we are missing out on.  And that still hurts a lot.  See yesterday’s blog post for proof… but years ago when I would get in a funk it could last weeks, now it only lasts days… That’s progress for me!  :-)

Anyway, that’s all I got.  I’ve been meaning to write this post for weeks, because things are pretty easy and mellow in our house these days, and it can be quite boring in our house lately.  In fact, sometimes 3 days will go by and I’lll realize that I haven’t posted anything on my Autism Daddy FB page and I’ll think to myself “that’s because I’ve got nothing to update them on, no bad news, no good news, nothing new at all.  It’s Thursday… He’s gone to school, come home, ate peanut butter for dinner, watched tv, went to sleep, got up and did the same for 3 days straight…”

And I guess you can say that being bored is progress for all of us… Years back during that all hands on deck summer of rage, it sure wasn’t boring! I would have loved to be bored back then!

Anyway, let me end this by reminding all the autism parents that

Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Ooh-oo child
Things are gonna get easier
Ooh-oo child
Things'll get brighter
Some day, yeah
We'll get it together and we'll get it all done

(AUTISM DADDY DROPS THE MIKE)











-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



8 comments:

  1. This comment has been removed by the author.

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  2. One of my favorite posts! Been following since our son was diagnosed and now he's 7 and we are hopeful to have this experience! Right now he is up many times at night and currently screaming it up around the house!

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  3. Like all things autism, I don't think anyone should generalize. I often see autism parents write "It will get better! I promise!" But they can't promise anything they don't have control over!!! Many people find it gets easier as their kid gets older and that's great for them. It doesn't mean everyone will have the same experience. Over this last year we've seen a significant regression in my daughter's mental health and cognitive function. She's become more violent than ever. We started her on pharmaceuticals and the side effects are horrible. Right now were playing medication wack-a-mole trying one med after the other and guessing at what is causing what. She's 11. But she's also 5'4 and 135 lbs. which is why the violence is significantly harder to deal with these days. Maybe things will get better. I'm still hopeful. But they don't necessarily get easier for everyone.

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  4. Sebastian is 8 1/2 and its Thanksgiving week. Need I say more? Looking forward to calmer times!

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  5. Totally agree with your perspective as it's what we've seen too with our twin 13 yr old boys - both with severe/classic ASD. We still deal with behaviors but it seems like the little gains they have made in receptive and expressive language have helped tremendously. I also agree that it's partly a shift in my thinking. So easy to compare when they are younger - but I still have those moments of grieving. How can you not?? Parenting these two boys is not what I thought it would be.

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  6. I agree with Shanti. Can't promise anything since autism presents, progresses, relaxes differently in each person. There are parents whose kids have gotten into self and others injurious behavior that makes their earlier problems seem so trivial. Some have to institutionalize their children because the behaviors are just to dangerous Sometimes someone, more than one, gets hurt.

    I'm happy for you that it has gotten easier, and it is certainly a beacon of hope that it can get better even if the child does not develop significantly. That things can mellow out, that parents, caregivers can get into a groove and life can become easier for all. But certainly no guarantee. Yes, sadly, it can get worse.

    But it can also get better. There are children who cannot communicate, cannot care for selves, who have other issues that make life difficult that work their way out of some or all of these issues so that life is much different. Better? Surprisingly, those such changes can also bring even more problems and heartaches into the picture. But this is the sort of change many of us parents hope occurs. A chance that our child can have more independence and control of care, direction, and life in general.

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  7. Love this post..blog..whatever you call it! Lol Milk of mag is my son's lifesaver..the mag stopped his headaches and he also isn't constipated! He use to hit his head but no more as long as he gets his cherry milk of mag in cherry juices juice..no head pain and pooping...winning! Lol

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