Well, that’s a new one

8 Feb

Parenting opens you up to a lot of opinions. A lot of stupid, unasked for, opinions from strangers. It’s par for the course, we all deal with it if we’ve chosen to reproduce (and if we’ve chosen not to, well, that’s a whole other kettle of fish some people need to fry.)

Now, add “special needs” to your parenting mix and you get to see the depths of people’s…just utter callousness and ignorance. I’m not even sure those are the right words to describe the junk thrown your way verbally.

I can remember the first big encounter I had in regards to a complete stranger telling me what to do with Maura. We had gone to a bookstore, which required crossing a big parking lot. Maura was three, could walk, but still hadn’t gotten any ankle-foot orthotics, so was slow in pace, easy to tire, and totally owned the idea of “baby steps”. So I had an umbrella stroller for her. We’d use it to quickly and safely get across parking lots, so I wouldn’t have to try to carry my long-legged girl all the time. And if she got tired, she had a place to sit.

I didn’t think it was a big deal.

An older woman, however, thought it was the most horrible thing she had seen in forever, and let me know it. “You should MAKE her WALK!” she announced to me.

I blinked at her, then just smiled and tried to walk away. Because I’m a nice person who doesn’t yell at old overly-opinionated ladies.

She didn’t get the hint. “You need to get rid of that stroller and MAKE her walk! She’s too old to be using that. All my kids were walking on their own by her age because I got rid of my stroller and MADE them walk.”

Amazingly, I didn’t tell the woman where she could stick the stroller. Instead, I cheerfully explained my daughter had a medical condition (low muscle tone) and we’d use the stroller as long as she needed it, thankyouverymuch.

But yeah. Dumb comments from people who don’t know what we go through. It’s par for the course.

And yet, just when you think you hear it all, some stranger has to go and prove you wrong.

Exhibit A – Internet Person Leaving Comments

Ah, the Internet Person, they’re a lovely breed. They know everything, and are amazingly witty…in their heads. Sadly, they use their fingers to type out the words in their heads, and direct their nonsense towards unsuspecting people all over the Interwebz. Last week, I was the intended victim who needed things explained to me, as left in comment form on my blog regarding Maura’s cognitive abilities –

“There is no such thing as mental retardation. It’s all in your head. There’s nothing wrong with your daughter she is the same as everyone else. I know you know this, but it’s absolutely 100% true. THEY CAN TAKE CARE OF THEMSELVES, just have to get them to believe it.”

I know I shouldn’t share the ignorance, in case it might be catching, but this one was Internet Gold, that once in a blue moon comment that is so bizarre that you can’t help but laugh at it. I mean, the idea that Maura’s been faking it this whole time? Wow.

Of course, I shared this with friends on Facebook. And my friends, they do not disappoint, because the comments that followed went like this –

Me –  I just can’t believe my kid’s been playing me like this since, you know, infancy

Pretty Friend – we’ve all been in on it, laughing our collective asses off. even PM’ing her with ideas about how to keep up the charade. it’s been fun and now i’m heart broken that the gig is up.

College Pal – Wait so we don’t tell Phoebe, yet?

One of my many Jennifer Friends – Never! We stick with the ruse until the last gun is fired!

I heart my friends.

But seriously, this is the type of crap that’s dealt to us. That we overplay our child’s issues. That they’re fine, we’re just making too big of a deal about it. Or we get the other extremists who are telling us that if we’re not doing all the therapies from inside a hyperbolic chamber that we’re failing our child, our Warrior Mom card is ripped up, we can’t be part of the club. If we say nothing but positive things, we’re being unrealistic. If we complain, we’re not appreciating the gift that is our child’s special needs.

This is why we joke about drinking a lot. I joke about drinking more than I actually drink. Because by 9 pm, I’m too damned tired to lift that wine glass to my face.

The jokes about coffee? Aren’t jokes. Those are reality. It’s what we live for. It’s how we sit here at our computers and read how we need to tell our kids to cut the ruse and be normal and are able to just laugh about it. Because coffee makes things better. And friends who have the same sense of humor as you.

So if you’re the random Internet Person full of wisdom who wants to educated me on my daughter’s abilities having never met either of us? I salute you with this cup of coffee, and a finger. Because not today Satan. Not today, or any other day.

I saw this on Pinterest, but don't know where it came from (bad link) - anyone can tell me the source so I can buy this mug for my sister, please let me know!

I saw this on Pinterest, but don’t know where it came from (bad link) – anyone can tell me the source so I can buy this mug for my sister, please let me know!

Big little moments

6 Feb

Maura has always been able to express herself well. But back and forth communication, that’s where we have struggled. And lately, Maura’s gone more quiet on me, so I’ve gone more “Use words” on her. Because we’re still teaching her how best to communicate to others, and not everyone gets interpretive dance.

Today – well, it’s been a rough morning because of older siblings who don’t understand that their possessions are the coolest things that must be pillaged by Maura in pure Viking style. Older siblings are also bossy, like saying how you can’t take a bite out of a slice of leftover pizza then put it back in the box.

So to communicate her frustrations, Maura let them know, loudly, what she thought of her siblings interferences.  Then threw the slice of pizza at Sean. Then picked up the slice of pizza upon being ordered to as I told her that throwing pizza was rude. (“Rude” is a word she gets – I don’t know why, but she does, so we use it.)

Maura picked up the pizza, and went to take an angry bite out of it. Sean, being the horrible older brother that he is, stopped her from eating the now dog-hair coated slice.

Maura screamed at this interference. I watched our morning going downhill quickly. She sat on the ground. I sat on the ground with her. I told her Sean was trying to be nice, that the pizza got dirty, he was being a good brother. I didn’t know how much was getting through to her. But she pointed to her hand – the hand she bites when angry or frustrated. I rubbed it gently and said “Don’t bite yourself honey, it’s…” I paused to come up with a word.

“Rude?” she finished.

“Yes! It’s rude to Maura. Be nice to you.”

“Sorry Mom. Hug?”

You get all the hugs sweetie. Because today, we were able to discuss the situation, however simply it might have been. The ability to discuss the situation and all the feelings is a huge step forward for us, one we’ve been working on for…well…ever. It sounds so easy, the conversation above. But it was preceded by stuff being thrown, Maura screaming, me yelling “ENOUGH!” at her, her screaming some more, the dog nosing in to try to figure out who was hurt and how she could help only to step on Maura’s toe which caused more screaming, until both of us were sitting on the floor and using our words.

This is sort of our M.O. – I get pushed to the edge of “I don’t think I can do this anymore” and then bam! A little sparkling moment of breakthrough. And however little that moment, its sparkle keeps me going until the next one. It’s not because I’m a saint or a superhero. It’s because I can’t give up on the girl who doesn’t give up on anything. And these little moments, these big little moments, are the reward for everything.

She loves me. You should too :D

 

 

How do we fix this?

5 Feb

A news story popped up in an online group of mine, headline blaring –

“Woman with Asperger’s who touched millions with viral video shot dead by police in Arizona

The story was about a young woman, who once posted a video of her dog comforting her during one of her meltdowns, being shot and killed by police after concerned people called the police because she was threatening suicide. She had a knife, which police say she came after them with. And then she was shot for being a threat.

Sadly, being suicidal and being shot by police is not uncommon.

I don’t know what happened in her apartment, I wasn’t there. What I do know is that many of us with children with cognitive disabilities worry about what happens to them when they’re adults and interacting with authorities. Case in point – a young man with Down Syndrome (an easily recognizable disability) became upset after being asked to leave a theater, ends up dead. Now, that county did do more training on how to deal with the disabled – but that’s just one county in one state. Which was Maryland. Meanwhile, in Arizona, a young woman with Asperger’s is shot and killed during a suicide call.

Something must change. Something must be fixed. Or else, who do we call, as parents, when we need help handling our grown children with mental disabilities? Because for many of us, calling the police isn’t an option, as we’re afraid of what they’ll do. We understand that our child is lashing out because of something in the moment, but aren’t truly violent. Which probably sounds odd to all those outside our secret society. Basically, sometimes our kids go all “fight or flight” on us. They either go down swinging or try to run. It’s basic survival instincts people. We all learn how to control it by a normal age, but those with cognitive disabilities may not.

That said, there has to be a better solution to confronting a suicidal person than a gun. There has to be. I mean, there are tasers, they work really well. Why not have that be first choice? Well, not all departments have them. New Jersey finally cleared them for police use.

But they work, as seen in this news story –

“The woman – who suffers from bipolar disorder and schizophrenia – hissed at police and struck one of the officer’s tactical shields with the foot-long blade.

Sgt. John Martinez – a 21-year-veteran – deployed the TASER after ordering the woman to drop the knife.

Martinez credits the department’s newly-acquired TASERs for preventing the use of deadly force that would have been justified.

Camden police began carrying the devices in early May.

“It makes me feel better knowing that I don’t have to go from zero to 60 and take somebody’s life if I have an alternative means,” Sgt. Martinez told the Courier-Post.

See, there’s two people involved in a shooting – the person being shot, and the person doing the shooting. That cop in the news story? He seemed pretty darned thrilled to be able to use a taser and not a gun in this incident. I’m pretty sure most cops would feel the same way.

So why aren’t more embracing this, when knowingly going into a situation where there is a mentally ill or cognitively disabled person involved? Because let me tell you, these stories are getting too common, and will keep getting common. The way our society handles the mentally ill and disabled has always been questionable. But now we expect them all to achieve independence – because we’ve taken most other options away.

There needs to be more options. For our loved ones. For the mentally ill. For the police.

I don’t know how to change it except to be vocal.

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Me and my grandfather, circa 1977. My grandfather was a Chicago police officer, who’s reason for being a police officer was to help people. Because of him, I truly believe that most police officers are out there trying to do a good job. He also taught me how to get out of a ticket when pulled over, because he loved a challenge.

 

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