One More Step Forward


Last week I got so upset at a friend of mine that I was forced to get up in a packed restaurant and walk out as to prevent from having a full blow public meltdown:  The kind of meltdown that is NOT a tantrum, but a GIANT emotional response to my feelings of being hurt, judged, misunderstood and totally overwhelmed at the injustice of it all. 

I’ve lost it before.  Primarily in doctors’ offices when advocating for my kid(s) was being completely missed and my impulse to protect and defend my boys was pushed to the limit.  Then, I am happy to speak my mind.  Which is usually met with less than the best of results.  :-/

This time the boys weren’t with me.  This time it was just one adult, who for all practical purposes meant well (don’t they always?) and was attempting to make a point – just as I was doing.

The difference is that my boys and I do not live in the philosophical world that non-special needs parents often do.  We do not have the luxury of philosophical debate.  We do not live in the land of ‘ideal’ and the place of judgment so many parents who simply have not been down this road do.  I live my life. Not someone else’s.  Not even the one I thought I would have.  But the one I actually do have.

Now you’re wondering what the issue was, right?

What started out as a friendly discussion about whether or not to medicate children turned into war when I was challenged with the blind statement that children don’t need medication, including my son – who has Pediatric Bipolar Disorder I.  The justification for the blanket statement relied on my friend’s personal experience with a family member’s children (nieces/nephews).  The argument was that we as a society over-diagnose and over-medicate our kids, and yet that isn’t an issue other countries, but rather something associated with the US. 

I wasn’t going to argue that.  Whether or not we over-diagnose, over-medicate, or have lazy parents who want a ‘pill’ to solve their children’s problems here in the US (or abroad) is not something I’m interested in debating.  Mostly because quite simply it has no impact on whether or not *my* child needs medication.


And then I was told that in order to prove I was right about choosing to medicate my son (like as if I have a choice), I needed to provide documentation in the form of articles, medical journals, and books.  I was told point blank that no matter what research, information, doctor’s opinions, experiences from other parents, or books *I* had researched on the matter, simply relaying that information was not good enough – I needed to provide it to my friend so that it could be vetted all over again.  That is if I wanted agreement – and by agreement I mean approval. 

I don’t normally have a problem with proving myself.  God knows that I’ve done a billion hours of research to make EVERY decision I have been forced to for all three of my boys’ medical care, so I clearly need to ‘prove’ my decisions at least to myself already.  So, what really set me off was being doubted, questioned, and judged, by someone who knows my character and who has never been in the position to have to make these kinds of heart-wrenching, no-right-answer, decisions.  I couldn’t help but internalize what was being said – I want everyone to think for themselves  – but why doubt me those that have gone through it?  Isn’t personal experience more valuable than any book?  Why on earth would I medicate my child if I did not think it was IMPERATIVE to his survival? 

This conversation had me flabbergasted, annoyed, pushed, and usually I feel ready to strike when such things happen – but this time – this time I was so hurt that my friend didn’t believe me, and couldn’t see past his own personal experience to simply trust my judgment – that I left – in a hurry and in tears.

I was totally flooded with emotion, frustration, anger and the desire to throw tables over in a restaurant while screaming at the top of my lungs, “WHO THE F*CK DO YOU THINK YOU ARE?!!”

Instead the next day I showed my friend the videos I have on my phone for my son’s psychiatrist.  They show Gabriel having a psychotic break.  There are many of them.  No more than a minute or so long each.  But the most recent ones at that time were of my son jumping on his bed, screaming and crying, yelling that he hated me that he was going to kill everyone, attempting to kick his dresser over on me, biting himself, screaming at me, ripping at existing holes in the sheet rock and eating what he pulled out, running through the house hitting the walls with his fists, and finally collapsing on the ground exhausted.  Totally normal behavior for my son this time of year.

My friend immediately recanted everything that was said and every judgment that was passed previously, and apologized. 

And I felt it was one small step forward to eliminate the stigma associated with mental illness – both for those who have it – and for those parents who struggle every day to keep their kids safe.

I may not have thrown the tables, or yelled at the top of my lungs, or even broke down in tears (although you know I did when I showed the videos), but I moved one more person’s thinking forward.  That has to be a win.

Here’s to all of you who have a challenging child, you’re not alone. :-)    

H

15 comments:

Berry Girl said...

It's amazing how many people can throw their opinion in and tell you that your child is 'normal' and you just want your child to have a 'label' or be on medication. Mind you this can all happen while your child is having some sort of episode right before their eyes. I am so thankful she was able to see that there are cases like in the case of your son where medication is needed.

bethany said...

I really should video one of my son's meltdowns. Maybe then people would start to understand. I completely know where you are coming from on this.

Angela said...

I'd would love for this person or these people to watch my son have his episodes in which he looks like he's either having a heart attack or a stroke and THEN tell me I don't need a diagnosis. I guarantee they will walk away with a different opininion about the diagnosis issue.

Unknown said...

Thank you for sharing. I love reading your articles. I am blessed to be the mother of a sensory seeking son with Asperger's. He is my greatest challenge and my greatest joy. It can be very hurtful and frustrating when friends and family think they have all the answers. Hang in there girl!

Lizbeth said...

I had a similar experience where a mom kept downplaying things with my son and going so far as to say how normal he looked. I know....

Anyway, she finally saw him completely and utterly meltdown in front of her--and me trying to bear hug him to stop hitting and lashing out. She just stood there in shock mumbling how sorry she was. All my words fell on deaf ears but once she saw it, she got it. I wish she would have understood from my words but she now is one of my biggest advocates at school. Funny how things work.

I totally get you on this. I wish I didn't but I do.

Martianne said...

I am speechless. Both about the hurt, pain and frustration you went through and the power you mustered to make one more person see. You are an incredibly strong lady, an awesome mum and an inspiring advocate.

Hartley said...

Thank you for the comments - I appreciate all of your support. Good to feel connected. :)

5boystokiss said...

Love you Hartley! you express my feelings so well
I am sorry you had to go through that. I am glad that you got through to him and he understood.

KDL said...

Video is so powerful. We learned so much from a parenting class (designed for parents of special needs children) by watching videos of us interacting with our daughter. I'm glad you had the video to show your friend. I'm extra glad he finally got it. It is sad that we have to go through such hoops. You are so strong!

Gavin Bollard said...

I'm sorry... did I misread?

Did you have a disagreement of opinion about your children's needs and behaviour while talking to someone who doesn't even have children of their own?

One thing that parenting special needs children has taught me is that before I can hold opinions, I need to walk in someone else's shoes - and even then, I have to keep an open mind because no two people or situations are the same.

I'm sorry that you had a tough day. Sometimes it's easier to simply discuss something different that you don't have any emotional investment in.

Unknown said...

I have dealt with this from a number of sources, but more often from my Mother-in-Law than anyone else. "I DID raise three boys, you know." Yes, I know. But you did not raise MY boy. Just because, "They survived," does not mean that MINE would, under the same conditions. Now, medications don't even factor into things with us, with Ash, yet. Dx's yes, several of them....but no meds yet. All the same, I get the same style of attitude in regards to what I claim about my child, what I do with my child, what I claim others can and cannot do with my child, etc. It doesn't matter that I studied child psych and the psych of social and emotional development and abnormal psych, and I can't even get her to read a webpage or pay attention when we try to explain something to her. It doesn't matter that I have worked in child care, worked as a teacher, worked as a consultant with a school psychologist, worked with special needs children in particular, before I was primary caretaker for my own special-needs child, and her experience extends only to what she knows of her own kids. It doesn't matter that I am a parent advocate for my own child and for other parents, that some use me as a reference and resource, that the "professionals" whose lives revolve around this kind of knowledge and these kinds of decisions, more formally than mine does, regularly take the information I give them, and use it to make their screening processes more accurate and complete....and what she's got is, "Well I'd think that..." It doesn't matter that I have been with my child (or, since school started, at least educating myself, etc., directly in relation to him) nearly 24/7, nearly 365 days a year, for the nearly-7 years of his life -- and that's no exaggeration....he's been babysat less than once a year he's been alive -- and she's in his company and only vaguely paying attention to him, for a few hours, a few times a year.

She won't watch videos, if we send them over the computer. And she's never here unless hubby's here too and we're all together, and we aren't going to show the kinds of video clips we get, that even might get through to her, while Ash is right there. Convenient for her perspective maintenance, isn't it? :-P

You're not alone, Hartley. It doesn't make up for the experiences like the one you just had, but there ARE plenty of us out there who would want this kind of evocative evidence from you so that we can better understand and so that we can take even less for granted, not NEED it because we are attached to our failure to grasp your reality.

By the way, this is Rhiannon Fieri of Unhandicapping.com I tend to have some issues leaving blog comments, at some blogs.

brainparentingcat said...

What a great mom you are. And so nice of you to not harm your friend! You have FAR more self-control that I do! It's a very hard situation. I'm on the "haven't medicated, still looking at things" side of the coin and am dismayed at if I mention this, how people jump on me. Huh? My kid has no behavioral problems and is spd & dyslexic. Plus he's my kid. No relation to anybody else's kid or situation. We're working on it. Our own way. Our own situation. Many of my friends use meds on their kids - no kid should be deprived of the feeling of success. (That should be on a flag, imho)

Sometimes I think that someone should publish a series of "good scripts" that people can read to understand acceptable ways to talk about things. And seriously, if anybody told me that I had to give them backup data on why I make the medical decisions I make for my child, I'd lose it.

Patty O. said...

You're a friggin' Champion, Hartley! I'm impressed that you even gave that friend another chance at understanding!

I'm so sorry you had to deal with that kind of judgement, but thank you for taking a stand, as you always do!

Kathleen said...

Congratulations dear sweet lady. You are an inspiration to me. I'm choked up at the thought of a successful resolution to this disagreement. Thank you for this post and blog. Thank you. Thank you. Thank you.

Sila said...

If only it were that simple to explain to someone when the meltdowns and such are internalized rather than externalized. :(

But good on you to prove to someone who has those kinds of opinions. x3 Nice job and nicely done.