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shhhhhh….

Ssssshhhhh....

Shhhhh….

Can you say that with your mouth closed, please?
-Brooke (whenever she is tired of hearing what you have to say)

***

It feels like a lifetime ago.  We were new to the world of autism.  Brooke had just recently been diagnosed and both Jess and I were reeling.

We didn’t know jack shit.

We began to work with a professional, a person with advanced degrees, years in the field and promising advice.  Some of what this person advised us to do helped make life easier, easier for Brooke, for Katie, for both Jess and me.  The advice was delivered with the authority of someone “who knew”.  There was never any doubt about whether the advice was right or wrong.

Looking back, I realize that I saw what stuck, ignoring what didn’t.

A couple of years later, this professional welcomed his/her own baby into the world.  Two or three years after that, the baby would be diagnosed with autism.  The professional with all the right answers was completely lost.  The advice so authoritatively given, suddenly didn’t seem to work or make sense.

To the credit of the professional, he/she admitted as much.

***

I tell this story not to put down the professional that had worked with Brooke so many years ago.

No, the professional always had the best intentions for Brooke at heart.

And by no means am I advising any of you who are parents of autistic children to ignore the advice of the experts and professionals you may have surrounded you and your family with.

The reason I tell this story is because too often I see advice given to parents, whether via the blogosphere, Facebook, Twitter or whatever, by folks who don’t…have…kids.

Your child won’t eat A, B or C?  Just do this.

Your kid does yadda yadda yadda in public?  Obviously you aren’t doing this simple thing.

Your teen is misbehaving?  Just say this.

Your child isn’t active?  All you have to do is be a good model.

You kid is overweight? Just help him make better choices.

I’m sorry, but if you don’t have kids, you can give advice until you are blue in the face, and I really don’t care if you have a bunch of advanced degrees from a bunch of Ivy League Schools or whether you’ve got an AA from an unaccredited Bible School or whether you worked as a nanny for a number of years, you just…don’t…know.

The only exception to this, and this is important, is if you have lived through or with the particular subject you are talking about.  Case in point, autistic adults have every right to talk about what worked and what didn’t work for them as children.  Extremely Tall or short people can talk about what it was like growing up in a house that may not have made every day activities easily accessible.

***

Here’s some advice if you aren’t a parent or do not share the fundamental trait of the child  and topic in question, and you have some great pearl of wisdom for those of us struggling with our parenthood:

Go ahead and say it…just do it the way Brooke will sometimes advise me on how to tell her something – Can you say that with your mouth closed, please?

***One last thing – Jess was nice enough to post this on her blog and I received a comment from a teacher essentially saying, “hey!  what about us?” 

I felt terrible.  We have been blessed with some fantastic educators on Brooke’s team throughout the years, whose advice has been vital to not only Brooke’s progress but our family’s as well.  What I failed to convey in this post is that it is directed more toward the “sanctimony that we often encounter out there. The, “all you have to do is this, and that will stop,” followed by righteous indignation when one suggests that perhaps it’s a little bit more complicated than that.” (Jess).  If you are a childless teacher who “gets it”, please know that this was not, and will never be, directed toward you.  As a former teacher and the son and son-in-law of educators, I know how hard you work, how much you care, and how much you mean to families like mine.

 

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Dear Jeremy,

Thank you.  Thank you for being who you are.  Thank you for doing what you did.  Partying, drinking and taking drugs with your son is one thing, but this took it to a whole new level.  Blocking off a residential street so your drunk son could drag race in a high performance car?  Brilliant!  So soon after we lost Paul Walker in a fiery car accident?  Genius!  Thank you, thank you, thank you!  And what’s the harm, right?  No one got hurt.  No one died…yet.

Because of you, the rest of us dads, those of us who struggle every day, wondering if we are doing a decent job by our kids, can look at each other and nod.  We can take heart, knowing that we are trying to be parents, not friends, to our kids.  We can find comfort in knowing, “at least we’re not that guy.”

So thank you, Jeremy.  Thank you.

Sincerely,

Luau

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Life Out of Focus 001

Parenting can be tough…any kind of parenting.  We worry about their safety, their development, their…well, everything.  When I look at Katie I worry, but I know that it’s the same worry that every loving mom or dad feels for their kiddo.

But for those of us with special needs kids, sometimes some moments can be especially hard.  The other day while walking Brooke to school, we fell in behind a couple of girls in her grade.  They were chatting away about this and that.  One turned to ask why I was wearing shorts while it was snowing and so cold.  I laughed.  Meanwhile Brooke was running through a few of her morning scripts.  The girls went back to their conversation and Brooke continued with he scripts.

That’s when it really hit me (for like the millionth time) just how big the gap between Brooke and her classmates is and, even harder to take, the fact that there was no exchange whatsoever between these two girls and my daughter…not a “hey”, not a “hi”, not even a nod of acknowledgement.  One of the girls had had a few play dates with Brooke over the years, and is one of the nicer, sweeter kids in her grade, but on that day there was nothing.  It wasn’t intentional or mean-spirited; it wasn’t an active blindness, but it was a blindness nonetheless.  It was as if she and her friend didn’t see Brooke at all.

Brooke herself didn’t seem to notice or care; she simply pushed on with her morning scripts.  I, on the other hand, was devastated.

With Middle School looming not so far away, and then High School and beyond, I am having a harder and harder time imagining what Brooke’s adult life will be like.  I used to be able to see it.  It was as clear as HD TV in my mind; but with each passing year, month, week, day…the picture loses a little focus and what I see in my mind becomes a little more foggy, a little more murky, a little more unclear.

I did find some hope this past weekend.  I was lucky enough to be invited to a dinner of young autistic adults.  Some were more talkative than others.  I chatted with several people on varying topics.  Most importantly though, Brooke seemed comfortable with the people there.  They all acknowledged her presence – they all saw her (and she saw them).

So as cloudy and as murky as my images of the future may be, it is comforting to know that out there in the real world are autistic people who support each other, cheer for each other, but most importantly, see each other.  As long as I know that Brooke will have that when she grows up, I can live with the picture in my head being a bit out of focus.

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Dear C.N.T. (Clueless Neuro Typical) Parents,

I hate to admit it, but I agree with you.  This Disney thing about the lines and the waiting?  Yup, we are on the same page.  I agree that the issue is bratty, ill-behaved kids and their lazy parents.  I’m with you that it’s about people who feel like they are entitled to go right to the front of the line.  I agree that it’s about parents who have no control over their children and take advantage of a system to cut in line in front of everyone who is patiently waiting for their turn to ride It’s A Small World or my personal favorite, the Haunted House. The parents don’t want to do the work necessary to teach their kids the lessons of patience and expected public behavior.  The kids are fidgety and noisy and have an absolute lack of self-control.  Your kids push and shove.  They cut people off, pushing others out of the way and you just smile or shrug your shoulders as if to say, “what are ya gonna do?”

Oh, wait, what?  You thought I was talking about parents of Special Needs kids?

Um, no.

This debate about special lines for Special Needs families is actually not all about those families.  This debate is about you, the C.N.T. Parent.  Why is there a special line for Special Needs families?  In part, it’s because of your clueless looks of disdain and horror when our kids flap or squeal in line.  It’s because you jump to the conclusion that if our child is flapping their arms or screaming in response to every time your child says, “Mama, Mama, Mama, Mama, Mama,” while you ignore your child, my child must be a brat or misbehaving.  It’s because your child will walk up to our child and say, “what the hell is wrong with you?” and you do nothing.  It’s the complete lack of empathy on your part and your inability to teach it to your own misbehaving, bratty children.

So when a place like Disney makes an effort to ease the discomfort for everyone (you included) by giving us our own line, you decide, “well, I deserve that too.”  So you actually go to guest services and game the system.  You actually go to guest services and say, “my child has a disability, give me my fucking guest pass.”  This, despite that fact that your child is completely typical.

This debate is not about letting Special Needs families “cut” in line.  It’s about giving them their own line because C.N.T. Parents like you didn’t want us in your line in the first place.

But it’s also about safety.  If my kid flaps to calm down, isn’t safer to let her flap in a line populated by people who understand to give her a little space as opposed to packing her with you and your unempathetic brood?

So, you’re right – these parents have to get off their asses and actually discipline their children and teach them how to behave in society, but those parents are you, the C.N.T. Parent, and those kids are yours.

Come walk in our shoes for a week during the school year and you’ll see what hard parenting work really is.

Thanks for nothing,

Luau

clueless-excuse

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There are a lot of parents of autistic children out there who just want to “fix” their child.  Although I believe my view on Brooke’s autism has changed over the years, I do distinctly remember a time when I felt exactly that.  Have I fully embraced the neuro-diversity camp?  No, but I do feel like I see more clearly why that group is so vocal, so adamant about their views, thanks in part to Jess’ outreach to the autistic adult community.

Still, as a father, it pains me when I see my baby struggling, and I can’t help but quietly wish that certain aspects of who Brooke is were different.  That sense of helplessness is what can get us, parents, into trouble.  We will grasp onto the slightest bit of hope, the tiniest shred of promise, the smallest particle of “proof” in the hope that we can “cure” our child of what “ails” them.  Whether we do it in our heads or actually move forward with it, we jump to attention when the snake oil salesperson presents us with an “opportunity”; we go to “that place” when the doctor says, “well, maybe…”

***

Yesterday Brooke has her annual check up with her pediatrician.  I like our pediatrician.  She’s the type that approaches things with a “don’t worry about it until you have to worry about it” attitude.  She sometimes seems cavalier about things, but because of that, when she says something needs to be done (like when she overrode the ER and said that Brooke needed an EEG stat a few months ago) you know she means business.  So yesterday we had Brooke’s annual.  After taking her measurements (at 10 she’s only 49.5 inches tall and weighs only 50 lbs.), the doctor looked at her growth chart and said she wanted to test for Celiac disease.

My immediate thought was really!  now this?  another goddamned thing to deal with??? Jesus Effing Christ!!!

We would have to draw some blood and have it tested, which we will do in the coming weeks.

What does this have to do with grasping for hope?  In talking about the effects of Celiac disease, the doctor mentioned some of the better know side effects (lack of growth, etc), but then she mentioned that in some kids Celiac disease can cause ADHD type symptoms and affect the child’s ability to learn.  Taking into account Brooke’s lack of growth and her precipitous drop in verbal IQ over the last two years, the doctor felt that we should cross our t’s and dot our i’s.  The likelihood is that it is not Celiac disease and that she simply burns through her calories because she never stops moving.

But what if?

But what if there is something going on there? What if there is something going on in her gut (shown to be our second brain) and it’s affecting her brain?  What if she went off of gluten and suddenly the anxiety and reading comprehension issues and processing issues went away?

What if, what if, what if…

Yeah, I went there.  I’m a parent.  I can’t help it.  I went to the exact same place when we were dealing with the possibility that Brooke was having epileptic seizures.  A small part of me hoped for the worst so that the path forward would become clearer – that there might be an answer.  How awful is that?  There is a small part of me that is now hoping, maybe it’s been Celiac disease all along?  Maybe the autism is much milder than we think.

Grasping for answers.

Grasping at any possiblity.

Grasping for hope.

grasping for hope...

grasping for hope…

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And now for something completely non-running and non-autism related…

***

I am a child of the 80s. I was 10 when the 1980s started and 20 when it ended. Unfortunately, as the case may be, my musical influences come from that decade. It kills me that my music is now on the oldies stations. Isn’t that what music from the 50s and 60s is?

Anyway, as a young kid, fresh into my teen years, I heard Run-DMC for the very first time.

When I first heard Rock Box, I thought what the heck was that? That was awesome! Here was a band/group that was combining forms of music that had no business being on the same mix tape, much less the same song. This was a new wave of hip hop music unlike anything that had been heard before. Run-DMC followed up their gold record with the platinum selling record King of Rock.

Finally they reached their crossover peak with Walk this Way from the multi-platinum album Raising Hell.

Why am I even writing about this? What’s my point?

As a parent, I felt it was my responsibility to introduce my children to the music their father grew up on, and so not so long ago, while driving about town, I plugged in the iPod and played them a little Run-DMC. I played Rock Box and King of Rock, My Adidas and It’s Tricky, You Be Illin’ and Walk This Way, but which one stuck for the little one? Which one did she latch on to and decide to incorporate into her life?

This one:

Yup. You Talk Too Much. Her favorite part? Where they say “Shut Up!” followed by “You talk too much and you never shut up.”

Now when Katie coughs? Brooke has broken into Shut Up! You Cough too much…and you never shut up!

When the dogs bark? Shut up! You bark too much…and you never shut up!

When someone let a, um, “bottom burp” go the other day? Shut Up! You fart too much…and you never shut up! which was promptly followed by a fit of uncontrollable giggles.

Yup! Quality parenting on my part…pure quality!

***

We now return you to your regular programming…

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I was going to entitle this post “She believes her farts smell like roses”, but I didn’t really think that would be appropriate.  That being said, there are people out there, in the real world and in the blogosphere, that truly believe that, in a metaphorical sense of course…or at least they are trying to convince you that it’s true – that anything she writes or says is the one and only way to parent an autistic child.  I read a post recently that shouted, “You’re kid has just been diagnosed with Asperger’s  – Congratulations!!!”  It was part of a running theme about how wonderful it is when your child has autism, that an autism diagnosis is all Sunshine and Unicorns and Rainbows, and how we just need to focus on the positives of autism and how if there is stress in your life because of the effects of autism, it’s never due to the autism, instead it’s the parents’ fault for feeling stressed and not loving their child enough.  In a nutshell that there is nothing difficult about autism in and of itself; that any difficulty is because as parents, we don’t love our kids; that if we get angry at autism, that is wrong and we are not accepting our child, that we are rejecting our child; that if we blame autism for some difficult moments, we are failing our child…

…that autism can only be seen as Sunshine and Unicorns and Rainbows.

***

I’m a sunshiny guy.  I love rainbows.  I believe that somewhere in the multiverse, a la Max Tegmark,  unicorns actually exist and dispense “magic” from their horns.  I believe that our attitudes can shape our reality.  I believe in the power of positive thinking.  I believe in the incredible magic of a welcoming smile and an outstretched hand.  I’ve been accused of being Mickey Mouse-ish, Peter Pan-ish, PollyAnna-ish – and I plead guilty, guilty and guilty, with pride.

But here’s the thing: it’s not always Sunshine and Unicorns and Rainbows.  Yes, there are positive aspects to being autistic, no doubt, but there are negative ones as well – just like any other human condition (and I mean that in the are you human? then you have a human condition! way)

My Brooke has autism and along with the autism comes anxiety, sensory issues, scripting, rigidity, social difficulty, teasing by peers, dismissal from adults.  Her days can be and often are hard.  She picks at her skin, she makes unsuccessful play bids, gets overwhelmed by words on a page.  She panics when a baby or toddler cries, she avoids our kitchen whenever someone is cooking…the list goes on and on and on….

…but also with the autism comes a steel trap memory and perfect pitch – she can sing a song back to you after hearing it just once; rule based thinking is allowing her to learn and extrapolate the grammar rules of Spanish just from watching Dora the Explorer; a different perspective allows her to solve certain problems more easily that her NT-peers; what she sees often cuts through the bullshit image we put out there for the world to see, allowing her to see who we really are at our core…again, the list goes on and on and on…

***

I had a friend years back who always insisted that everything was fantastic; everything was great!!!  Even when the shit was hitting the fan big time, she would insist that there were no problems, no issues…in the words of Han Solo:

…everything’s under control…situation normal…everything’s perfectly all right now. We’re fine. We’re all fine here now, thank you. How are you?

This despite meltdowns happening all around her.  I finally stopped asking.

***

Raising kids is not easy.  There are highs and lows, strung together with everything in between.  Being the parent of an autistic child, of any special needs child for that matter, I believe stretches that range.  I tell people that Brooke has made me a better father, husband and friend; that the lows are just that much lower, but the highs can also be that much higher.  Along the way, I think I’ve learned to appreciate the little things that so many of our fellow parents of NT children forget to pay attention to.  Brooke has shown me the way.  She stops, she notices.  While others are whizzing through the world, she is taking in its incredible beauty.

But to claim that there is nothing negative about being autistic or being the parent of an autistic child is, in my opinion, naive at best and extremely harmful and dangerous at worst. The authoritative claim that family stress only comes from the parent and not from what autism can do in terms of anxiety to a child? Misguided at best, hurtful and quite possibly negligent at worst.  What happens to the child whose parents start to blame themselves for everything and decide they simply can’t take it anymore and either walk out, check out or in a truly desperate act, take their own life? – all because when they found out about their child’s diagnosis, they were told that all they had to do was remain calm and that any stress their child was feeling was a direct result of the parents’ behavior – that any problems their child was having was because of them and their inability to accept their child.  I’m not a lawyer, but that sounds like dangerously negligent advice to me, especially when dispensed as if it were the one and only truth, not just the truth for one advice-giver.

There is no one truth when it comes to parenting…any kind of parenting.

We are all on our own path – what works for my family may or may not work for your family.  In fact, what often works for me doesn’t work for Jess and vice versa.  Each person with autism is a unique individual that in some areas has more in common with other autistics than those who are not, but in some cases have such differences that as a layman you would swear there is no way they would have the same diagnosis.  If every autistic person fit into the same description and needed the same kind of response from parents and care-givers, there would be no need for an IEP would there?

Listen, if you are living by the “Everything is Sunshine and Unicorns and Rainbows” philosophy and it’s working, well then more power to you and I wish you well.  Amen! That is fantastic, but understand that you’ve essentially proven only one thing: that Sunshine and Unicorns and Rainbows work for you and your family. Different strokes for different folks…but I would urge you to really take a look in the mirror and see if there is something, anything, that you are refusing to see.  A life that only sees the positive is a life with blinders on, in my opinion, and in the end it cheapens the wonder of the highs.

But if you ARE struggling with your child’s autism diagnosis; if you ARE asking WHY and HOW; if you DO get angry and sad, sometimes at the same time; if you do FEEL stressed please, please, PLEASE don’t read these posts by the Sunshine and Unicorns and Rainbows crowd and then think of yourself as a failure, as a non-loving mom or dad – don’t believe for a second that the pain you or your child feels is your fault, is anybody’s fault.

It. Is. NOT!!!

I am not saying that you shouldn’t read the stuff by the Sunshine and Unicorns and Rainbow crowd, I’m just saying you should accept their philosophy as something that seems to work for them.  If you think it might work for you, well, go right ahead!  But if you try it and it doesn’t work, DON’T BLAME YOURSELF!!!  It reminds me of the churches that say if you can’t pray away whatever troubles you have in life, then you don’t have enough faith.  Sometimes faith alone isn’t enough, because that which troubles you doesn’t go to church.  Sunshine and Unicorns and Rainbows are not the end all be all authority on parenting autism and if it doesn’t work for you, despite what they may lecture at you with unyielding assuredness, that’s okay.

Struggling, asking why and how, getting angry and sad, feeling stressed are all normal reactions to life in general.  Every parent goes through those feelings, even parents of NT children.  If you’re having a hard time, remember that you are NOT alone; that there are places you can go to vent, talk and find support; remember that all parents struggle; we, as special needs parents, may struggle a little more; we may worry just a little bit more.  I would think that not worrying about the future, whether it’s tomorrow or when our kids turn 22, is a sign of denial.

Struggling, questioning, feeling overwhelmed and stressed are natural – it all comes with parenting, whether your child is autistic or not; and in my conversations with NT parents, their struggles are just as big to THEM as ours are to US.  Those thoughts and feelings are what instigate change and progress and hopefully move the conversation forward.

Did your child just receive an autism diagnosis?  This is what I will tell you – it’s going to be okay.  The diagnosis doesn’t change your child.  He or she is still the wonderful, beautiful being you have loved since birth.  His or her diagnosis will open doors, it will give you a starting point, it will give you tools, it will let you know where certain behaviors are coming from and will hopefully allow you to communicate better with your child.  The road will be bumpy; there will be lows, there will be stress, there will be anger and sadness…

…but just remember there will also still be sunshine, there will still unicorns and there will definitely still be rainbows – and those moments will shine brighter than any sun, be more magical than any unicorn and be more colorful than any rainbow.

We are all on different paths, but we are all, ALL, in this together.

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