Monthly Archives: April 2013

Father Meeting Son

I just read this and it is now one of my favorite birth stories ever. The birth of my best friend’s third child, Berend, beautifully told by his father  from his own perspective. So touching, you can see his beaming pride, his tender smile as he watches over his wife and new child. I wept at the end.

Soren, I’m so glad you married into the family. Berend, I’m glad you made your way into it, too.

Dappled Things | Mary, Queen of Angels 2007 | Essays.

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Carissa K: What It’s Like to Be an Allergy-Mom

This. Much more reasoned than my angry rant yesterday. The other thing about managing chronic illness in children: sometimes you just get mad.

Most of us never grew up with a friend or sibling with food allergies. Unfamiliarity leads to a misunderstanding and a missed tone about food allergies. So while our kids seem to get it just fine, there’s a great deal of mental reconditioning and a real shift in mindset that needs to happen for us adults.

via Carissa K: What It’s Like to Be an Allergy-Mom.

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So Angry

I am so angry right now there are not words in me to express it.

I had a long conversation last night with a mother whose son has autism. What they are going through is heartbreaking. Heartbreaking in ways that it is difficult to imagine. She said she doesn’t know what to do anymore. And I didn’t know what to say. All I could do is listen. Listen and pray. And theirs is one story among thousands and thousands.

My own son was gasping for breath just two nights ago, doing that pacing thing that I recognize from my own asthma attacks, when your body moves to try to find the oxygen because you don’t instinctively know what else to do. Yeah, imagine that. And now picture that he only recently learned to walk and is still covered head to toe in baby fat. We avoided the hospital this time and were able to get his breathing back to normal, but my God it was scary.

My older son is getting new allergies every day, it seems. He is miserable and frustrated. We all are.

They will most definitely need special accommodation in their schools for their allergies and asthma. And I’ve already heard it from other parents of “normal” kids: why should we have to change what we do just because your kid has a problem? Why should I not be able to send nut-covered cupcakes to the classroom just because your son has allergies – it’s not fair! Yeah – talk to me about fair after living for one month in my house! You can take your nut cupcakes and shove ’em where the sun don’t shine.

And then I read this:

We just went and visited our local township community preschool. Out of 400 kids, 100 had a delay of some sort. The classroom they were going to put my son in had 20 kids, 12 autistic – with 1 teacher and 1 aide.

The kicker is they get to call these classrooms “mainstream” and “general education,” even though we all know they are anything but. If the ratio is 300 NT to 100 ASD, why are rooms over 50% autistic? Funny.

The point is – even if we are to shove off all these kids into their own special segregated rooms (“developmental preschool”) to spare the neurotypical 4 year olds not having as much attention bestowed upon them – it’s the same freaking thing. There’s TOO many of them. EVERYWHERE.

So my son is going to church-based K with an ABA-trained aide, paid for by ME. My school district told me these were my choices. Put my son in a room with 12 other ASD kids with no structure and no expectations, or pay for something else myself, all while my tax dollars go towards educating everyone else’s kids – just not mine.

And if we are going to get honest – *really* honest – I think that’s a load of shit. Why do I have to pay to educate your NT kids, and then pay out of pocket for my own just to get him an approprate education? Total crap.

It’s a giant, giant mess – and getting worse every single second.

And it makes me want to SCREAM. “There’s too many of them.” Them.

Why do you have to pay to educate our kids (at public school)? WHY? Because this is what it means to live in a community!! And do you think these kids or parents caused their problems? Do you want to hear my theory on what is causing epidemic levels of ASD and allergies in our children? I think we did this. I don’t know how, but my money is on toxins in our environment (GMOs, pesticides, etc.) or the use of technology we haven’t fully tested for long-term side effects (sonograms, medicines).  We have bought wholesale and willy-nilly into whatever any damned swindler is selling us.

The least we can do is show a little fucking compassion. Let’s stop with all the “us” and “them” shit and get to work on finding a cause and a solution and do the best we can by all of our kids. Your “normal” kid and mine. All of our kids.

And guess what? In this generation of children, if your child is neurotypical and immunotypical, you are not more virtuous – you won the fucking lottery.

And yes, I said fuck and shit and damn.

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Begging a Favor

I’m asking for a favor. Really. You. If you are reading these words, then I’m talking to you.

This has been a raw week. A raw week for my family. A raw week for this country. A raw week for this world. I need a break. I am begging you, if you are reading this – be part of what is good, do not participate in what is hateful. If you hear yourself start to use blame or shame or rage or stereotyping against someone – even yourself – please, stop. If you hear someone around you doing it, stop it. No, “Those Muslims” or “that Obama administration  or “those Republicans” or gun-toters or granolas. No “lazy” or “stupid” or putting someone down in front of other people. No gossiping or bad-mouthing. No bending tender necks in shame under the heat of your wrath. Stop. I need a break. We all need a break.

If you find yourself irritated by some older person walking too slowly in front of you, imagine what it must feel like when each step is painful.  When your toddler yanks off his shoes for the umpteenth time when you are running late, imagine what it must feel like to have zero control over your world.  When you get impatient with a student who hasn’t done his homework, reach down and say, “Let’s do it together, now. I’ll help you.” When you see the face of someone who has committed an atrocity, remember that he (or she) was a baby once, and probably has at least one person in his life who is also devastated. When you feel justified in your lecturing or preaching down to people you feel superior to, remember what it felt like the last time someone made you feel small.  When you feel numb from all of the violence, be the one to reach out in peace rather than hatred and blame. When you start to forget because the news cycle has moved on, remember that there are still families for whom the grieving is new, who haven’t moved on. When you think you have it the worst, remember that the people in the house next to yours probably have a very hard story you haven’t heard yet because we’re all trying to look perfect. When you know someone is going through something tragic and frightening and isolating, be the one to take over a plate of dinner and a hug. Reach out. Give the benefit of the doubt. Help.

I’m begging this of you, because this week I cannot stop crying. I’m begging you this not because I expect to change the world – the readership of this blog is hardly influential in size. I’m begging you this because we have to start somewhere. We have to stop it all somewhere. It’s you. It’s me. That’s all there is.

One more favor, and this one is from you, God. Without you, it all flies apart. We need you, and we know that. But from the rest of it, we need a breath.

Heaven and Earth 

“And there was silence in Heaven for the space of half an hour”

-Revelation

GOD, who with thunders and great voices kept
Beneath Thy throne, and stars most silver-paced
Along the inferior gyres, and open-faced
Melodious angels round,—canst intercept
Music with music,—yet, at will, has swept
All back, all back, (said he in Patmos placed)
To fill the heavens with silence of the waste
Which lasted half-an-hour! Lo I, who have wept
All day and night, beseech Thee by my tears,
And by that dread response of curse and groan
Men alternate across these hemispheres,
Vouchsafe us such a half-hour’s hush alone,
In compensation for our stormy years!
As heaven has paused from song, let earth from moan.

-Elizabeth Barrett Browning

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A playlist as we “look for the helpers”

I haven’t known what to say about Boston. I have a very difficult time thinking about it or looking at images of it or reading the news about it. I keep thinking about September 11th and what we went through then. I keep thinking about my kids and my husband and how I would feel if it were them. I keep feeling my stomach falling. It seems that anything I would say would be too trivial, and I find myself distancing my thoughts and emotions from it so that I can keep going through my day. And I don’t want to appropriate this tragedy – as though it’s really truly mine the way it is for the Richard family or for the other families directly affected. I don’t want to insert myself that way. But it’s still overwhelming. I think Fred Rogers’ mom’s admonishment to “look for the helpers” is wonderful. I’m looking forward to checking out TED’s playlist of helpers. I hope this helps you, too.

TED Blog

In the day since the Boston Marathon was interrupted by two bomb blasts – which killed three and injured more than 170 – a meme has emerged online: “Look for the helpers.” The quote comes from Fred Rogers, who shared in his tome The Mister Rogers Parenting Book, “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers.’ You will always find people who are helping.”

In the images of the terrible scene in Boston yesterday, the helpers are obvious – bystanders attending to the injured, paramedics rushing to the scene, police and marathon volunteers helping the crowd. Even Google swung into action, creating a person finder app for those with loved ones at the marathon finish line.

We love the idea of looking for the helpers. To keep you inspired on a hard day…

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More from my Baby – So Proud

These were all reported to me by RHR. We were at the playground together, but I was on baby duty at the swings with Big E’s best friend’s baby brother and their mom while the big kids and dads ran around.

Proud Moment #1:

A kid (around 4 years old or so) got into it with Big E’s playmate. Apparently, this boy was very much in the wrong. As no other adult was near, Big E’s friend’s dad stepped in, broke it up, and reprimanded the child. The boy was crushed. Big E saw him sitting alone, looking forlorn.  He walked up to him, put his hand on his shoulder and said, “You look sad.” The boy didn’t look up but nodded. Big E said, “That’s ok. Sometimes grown-ups get angry, but everything will be alright.” The little boy looked up mutely at my son and took in the comfort offered.

Proud Moment #2:

Big E faced a huge playground apparatus that was scaring kids his age and younger. Undaunted, he stared at it for a moment, and then climbed it.  Up and over. Big and scary and difficult to negotiate, it was conquered by my courageous boy.

Proud Moment #3: 

The little boy Big E had comforted earlier found him and said, “Hey, can we play together?” Even though Big E was already playing with his best friend, he said, “Ok. We can play together for a little while.”

Empathetic, brave, and inclusive.  So proud to be his Mommy.

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Joy or “Just Wait”?

Yes, yes, yes.  More of this in our world, please.

Joy or “Just Wait”? | Advice for Moms – Power of Moms.

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