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Posts Tagged ‘parenting’

Grasping for Hope

Posted in Uncategorized, tagged , , , , , , , on May 10, 2013 | 6 Comments »

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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Shut Up!!!

Posted in Uncategorized, tagged , , , on April 25, 2013 | 4 Comments »

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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Sunshine and Unicorns and Rainbows

Posted in Uncategorized, tagged , , , , , on September 27, 2012 | 8 Comments »

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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Flash of Anger

Posted in other, tagged , , , , , , on June 3, 2012 | 8 Comments »

On the way out of the grocery store today with Brooke this afternoon, I watch a father trying to coax his 20-something year old, 6’2″ son with what appeared to be autism into the store – the father was gentle and obviously skilled after however many years of having to do what he was doing, but he was still having extreme difficulty convincing is son it was time to go in.

I could not help, but for a moment, feel anger – not toward the father or the son, but to the situation and whatever deity put them in that situation.

I know children seldom grow into the expectations parents have of them – Lord knows that A) in some ways, my life is completely different from what my dad envisioned for me and B) my own children have already changed (not for better or worse) what I envision for them as adults – but I can’t imagine that this father, some twenty plus years ago thought that he would be doing what was required of him today.  I imagine he foresaw his son leaving for school or taking a job and living independently.

Autism and other debilitating disorders do that – they don’t just change the dreams we have for our kids, they can crush them.

Brooke was brushed more lightly than others with autism.  She does not have Asperger’s, but she is verbal and she is socially motivated.  I see a kid that wants to be part of society, wants to contribute…someway, somehow.

Maybe my long-term expectations are high; maybe they are unrealistic…

…maybe part of the reason that I got a little angry this afternoon was that I was afraid that I was getting a glimpse of the future…

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Own It

Posted in diet, health, tagged , , on September 2, 2010 | 6 Comments »

I’m sitting in the audience of a stage production Katie’s camp is doing. For the past two summers, Katie has attended a 3 week drama camp and simply loved it. The productions have been what you would expect from a 3 week summer camp, attended by kids ranging in age from 7 – 18. It is NOT Broadway, but the joy on Katie’s face when she is performing is simply priceless and makes it all worthwhile. As I sit in the audience before the show, I overhear a conversation between two mothers. Normally I am not the eavesdropping type, but these two ladies are sitting right next to and directly in front of me, so it is hard not to listen to their droning. From what I can tell, their girls are probably in the 11 – 13 age range, and have been attending the camp long enough to have “graduated” from the chorus roles. These two are complaining about how there are too many little kids at this camp, that there shouldn’t be so many, how in last year’s production it seemed that too many little one missed a step here or there.

I’m thinking to myself, what do they think this is, Summerstock? They go on and on complaining that it’s about time their daughters got roles that were bigger and more important (I wonder if they had ever heard the phrase “there are no small roles, only small actors”). But it isn’t this incessant droning that gets my hackles up. No, up to this point, I am simple amused by their silliness. But then one of them says this:

“You know what else I’m going to complain about? Too many snacks. They let these kids eat too much candy. It’s ridiculous. She comes home having eaten 5 packs of M&M’s. I’m going to have to make Jenny* run around the block a dozen times just to drop her weight back to normal!

Now, I agree that running is a great way to drop weight. I also agree that candy during snack time is not a great idea. But did I mention that these snacks that the camp “gave” to the kids had to be purchased BY the kids? Let that one digest for a second.

Right, candy was available for purchase. It was not given to them freely. So, although I think that maybe the camp could have provided better choices for purchase, I don’t think the blame for Jenny’s extra few pounds falls anywhere near the camp. In order for these kids to be able to purchase their snacks, guess where they had to get their money? Oh, I don’t know, maybe from you Mom? I wonder if the mom ever considered having a serious discussion about making healthy choices with her daughter before she handed over some spending cash.

Each snack cost $1.50. I would hand Katie $2 and tell her to pick something relatively healthy, but I also told her that every once in a while feel free to pick something junky. Most of the time, she chose pretzels. I would also pack both fresh and dried fruit in her lunch, which she ate 90% of the time.

My point is this. As the parent, you need to “own” the choices you give your children. There is a great commercial that aired a while back where a mom was with her daughter, making sure she did the right thing every time a choice came up. At the end of the commercial, you realize that the mom isn’t really there, it’s her presence that is there, helping the child make the proper decisions. The commercial ends saying, if you don’t talk to your children about drugs, how will they know what to do?

Well, the same goes with nutrition and food choices. If you’re gonna hand your daughter $10 everyday (a whole other topic in and of itself) and let her loose in a candy store, don’t expect the candy sellers to give sound advice to your child. That’s the parent’s job. Preventative care (talking to the child beforehand) is a lot easier than treating the results of poor choices. Some of you may say, well, how do you know your kid is making the right choices? Well, you don’t know for sure. In part you have to have faith that you if you believe you have done all you can, then your child will make the right choice. A few years back, when Katie was 7, she was at a friend’s house for a playdate, the mother called me about 30 minutes before I was supposed to pick her up. She reassured me that everything was fine, but that Katie had asked the parent to call to make sure it was okay for her to have ice cream. It’s not that we don’t eat ice cream in our house. We just generally don’t eat it shortly before dinner. Point is, she was thinking about her choices. She was 7.

We need to own the choices we make when it comes to taking care of ourselves. These two moms in the audience obviously expected their kids to simply know what was okay to do. Without talking to their children, how could they? In addition, I seriously have to wonder why they continued to line their girls’ pockets with cash when they refused to make healthier choices. Or why they simply didn’t send healthy snack with their children in the morning. I’m pretty sure the various snacks I sent Katie to camp with (including vacuum baked bananas, greek olives, a variety of fruit, even some all-natural beef jerky) cost less per day than the $10 these ladies were each spending daily.

There’s nothing wrong with indulgence. This past week, while on vacation, I’ve had more ice cream I think that I’ve had in all of 2010! Indulgence is a good thing. But what is the point of indulgence if we do it everyday? Can you even call it that if you’re doing it everyday?

I guess my point in the end is you can’t blame anybody else if you don’t give your child the tools to make the right decision when it comes to nutrition and fitness. With those tools, they will in all likelihood, make the right decision more times than not. Without those tools, you can bet, the wrong choice will be made every time.

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