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.


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.


Dear Maura, please stop growing

4 Feb

Okay, I don’t mean forever – though now that we’re the same height, I’m thinking she’s tall enough, and can stop growing upwards.

But she probably will be taller than me. It’s a fact I’ve embraced as the short person I’ve always been.

However, I need her to stop growing for a period of time. One long enough for me to delve into the pit of despair that is the (clean) laundry pile and sort out what doesn’t fit her anymore. Which is a lot. Because she keeps growing and keeps wanting to wear things that don’t quite fit her anymore.

“That’s too small honey.” I say.

“No!” she insists.


Even when she can admit that yes, she’s outgrown something, she forgets that and by the next week she’s trying to get herself into that outgrown item. Which is how she got stuck in a sweater the other week.

I know, I should be able to just Konmari things, pile all her clothes on the bed, and sort them quickly. But I must do that while she’s at school, or at least out of sight. Then, I must be able sneak those things out in the cover of darkness, where she won’t see. While making sure any other teen sibling who is told to fold the current pile of clean laundry on the table doesn’t fill Maura’s drawers with clothes that don’t fit because I didn’t beat them to the pile.

Oh, and let’s be honest – with all the other “fun” stuff I get to do on a daily basis in this indentured servitude vocation we call motherhood, it’s not the highest thing on my priority list. It’s getting there though. Because the clothing wars are beginning to rule our mornings, and I’m trying to make mornings less of a battle.

So if you don’t hear from me, I’m either trapped under a pile of hopefully clean laundry, or in a death match with Maura over a plaid skirt that no longer fits but she refuses to give up.

And maybe we’ll find the gym shoes we lost last week. That would be nice. Though she can fit into my shoes now, and not stretch them out like other teen girls in the house <cought>mim<cough>

Growing out the bob and rocking her outfit - that's my girl there! (Autumn 2011)

#TBT Maura’s favourite outfit from Autumn 2011 – she insisted on buying this outfit, then rocked it. 


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