Tag Archives: community

Kreed

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I follow several blogs and facebook pages related to autism, as I’m sure most of you do, as well. Maddox from Maddox’s Autism Chronicles cracks me up on an almost daily basis. Melon and Boy from Cat on a Trampoline are a constant source of amazement, and their mom can be relied on for some seriously hilarious writing. Casey from Conversations with Casey is such a joyful spirit, and his mom is quite funny, too. But I’m here to tell you about Kreed.

Kreed from Kreed’s World, a Complex Journey through Autism is a handsome young man who is nonverbal but has recently been able to communicate with the world through his device. His mom, Erin, also shows the world what living life in an autism household is really like, when your child with autism rages and self-harms at times. Kreed has a whole host of medical issues, and is currently in the hospital, and has been for quite awhile. He’s been in intense pain, and the doctors aren’t exactly sure how to treat it. He’s also suffering due to too much carbon dioxide in his system. In fact, he’s doing so poorly, they have had to put him in a medically induced coma. Erin’s post the other day about having to walk out of the room when her child’s eyes were pleading with her to save him from the doctors trying to put him out was gut-wrenching.

And I’ll be honest that I’ve been tempted sometimes to scroll on by and save myself the pain of watching what this boy and his family are going through. But I don’t. Because I’ve been in that helpless situation with a baby in the hospital, whose life hangs in the balance. As you sit in the waiting room knowing you are powerless to help your child, and not having a clue if he will survive the night or not.

And when you read this, think about this, experience this, you realize the divide in our community is quite petty. We need to be there to support each other every damn day. We need to read and hear each other’s stories, and not scroll away from the pain. We need to reach out to each other when we are in our darkest moments to lift each other up. Because watching your child suffer is horrible. Watching him suffer and feeling alone on this Earth is even worse.

I’m going to make and send Erin a card for Mother’s Day, because let’s face it – we all have more than one mom on this planet who have taught us deep lessons about living. If you would like to support Erin and Kreed, visit their page, like it, follow it, send them something, help with their medical bills – whatever you would like to do. But at the very least, send good, supportive positive thoughts their way. They need them.

Kreed’s address: 2208 Valley View Drive Woodland Park, CO 80863

 

Update: Kreed is back up and on his feet this week, spending time in the hospital playground and at the piano! So happy to see this!

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Things Are Looking Up

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This morning, I start my new job. I am thrilled, relieved, and excited.

When we moved almost three years ago now, this is the type of job I was sure I would find. It just took me three years to get there. Great pay, great hours, benefits, only two other people in the office, and job duties I know I can handle. The other great part is that it is a salaried position, so my hours are flexible as long as I meet the expected number of hours. This is ideal for the parent of an autistic child who may have IEP meetings or random meltdown rescues to handle in the course of a year.

It is in a tax office, and so the next few months will be hectic. But I’ve done hectic, and I can handle it. I know I can, which lends credence to the idea that even if you aren’t in the best situation (my previous, high-stress job), you’re still learning.

This great news, along with the receipt of our building permits (finally!), and a report card for The Boy that has all 90s on it means I want to shout from the rooftops, and dance in my pajamas this morning. It’s one of those feelings you want to bottle for darker days.

As always, thank you all for your continued support. Good things come from being kind, looking out for each other, multitudes of patience, and support from a great community.

Take the Time

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numbers-time-watch-whiteThe other day, I answered a phone line that I don’t typically answer because my co-worker got called away from her desk a few moments before.

The woman on the other end began to ask about the size of the boats we use and ended by explaining, “My son loves the water, you see, but he’s terrified of boats.  He’s on the autism spectrum.”

For a split second, I had a choice.  I could identify myself as someone who could sympathize on a very real level, or I could answer her question simply, and get off the phone quickly to answer another call.

“I totally understand,” I said.  “My son is on the spectrum, too.”

Come to find out, she had recently moved to the area with her family, and was looking to connect with other families, specifically with the aim of working to expand services for our kiddos in our area, because they really are dismal.  We chatted for a good ten or twelve minutes, and exchanged phone numbers.

Since then, we’ve friended each other on Facebook and connected again via text. I hope to meet her and her family soon, and introduce them to some of my friends and their families so she can start making some connections in the area.

I know that sometimes we get tired of carrying this mantel of “autism mom,” and sometimes we just don’t want to see another news article about a possible cause.  But I’m glad I made the choice to identify my true self.  Two years ago, I was where she is now, freshly moved to a new state and trying to find a new community of support and advocacy.  If we don’t take the time for each other, who else will?

Posting Embarrassing Stuff About Our Kids on the Spectrum

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So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be.  I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs.  Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see.  This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do.  No clear pictures of faces, no names, no locations.  There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more.  Mostly about why I started this blog in the first place.  It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face.  This is apparently still a problem.  People are given this life-altering information and no help.  I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing.  Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web.  But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy.  After all, I am his mom, and capable of making lots of decisions about his life.  As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal.  Thoughts?

Extra-Curricular Activities and the Autistic Child

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I read and shared a great article the other day, written by Laura McKenna, entitled, “Our Public Schools Must Be More Autism-Friendly — Here’s Where to Start,” and published on the Pacific Standard Magazine website.  In it, Ms. McKenna highlights ways in which schools could be more inclusive with their extra-curricular offerings.  She makes an excellent point, as may of the kids I know on the spectrum do not participate in clubs and sports, due to the level of social sophistication that is required for inclusion.  But that only allows our children partial access to everything the school experience has to offer.

The Boy and I have made the decision to continue with school band next year.  I have spoken to the band director, and we are going to take a proactive approach, and really monitor what needs to be modified and accommodated for him, even in terms of performances.  I am comfortable with that, and if I ever get uncomfortable with the situation, I can pull The Boy out and continue with private lessons, which was my intention when the whole band debacle went down this winter.  But here’s the thing: I realize now what a social thing school band is, and I understand that this may not work out for The Boy, and that’s OK.  But I still want him to belong to his school community, and if it won’t be through band, then how?

We have mostly stuck with independent stuff like surfing

We have mostly stuck with independent stuff like surfing

When he dropped him off after spring break, his dad told us all about how they played basketball, and The Boy has a great shot.  They also worked on catch, but were not as successful, and they would work on that (uh, right).  Sure, if The Boy has interest in playing sports, we could encourage it, but to what end?  School sports are also social in nature, with the necessity to read cues from teammates and opponents and to quickly interpret them and decide on a course of collective action – a tall order for someone with underdeveloped social instincts and executive processing difficulties.  So he shoots free throws by himself?  Again, how does this help him fit into his school community?

Our local Autism Society Chapter has taken on the challenge to fill this void in our community, and I applaud them for it.  They have been recognized statewide for creating a “Friends, Fun, and Birthday Club” which happens once a month to celebrate all of the kids birthdays that happen that month.  Friends, siblings, and those on the spectrum are all invited – anyone can attend, and since Birthday Parties are kind of a sore spot for the autism community, this meets a very strong need, and is quite successful.

They also have a once-per-month fundraiser at a local pizza restaurant, which has turned out to be a social gathering for the kids on the spectrum and their siblings.  They all sit at the same table, away from their parents, and they bring their DS’s and gameboys and have a good ol’ time.  It is a sight to behold, and I almost get teary-eyed watching them together.

The chapter offers monthly music and art programs for the kids to participate in, too,and again, friends, siblings, and kids on the spectrum are all welcome.

But again, this is all outside of the school community.  Inclusion needs to happen outside of the classroom, as well, and it is high time our schools begin to recognize the void in our kids lives.  Yes, we want to allow them the comfort of being alone, but as adults on the spectrum will tell you, they also want to have friends and be a part of the larger group.  We have to help them do that, and developing programs to address those needs is long past overdue.

I’m off to share this article with my son’s principal…

Not Fate But Opportunity

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512px-The_knock_knockI like to think that there’s a reason for the important stuff that happens.  Not the “God doesn’t give you what you can’t handle” garbage, because there are lots of people who can’t handle what they’re given.  But I like to think that when you are open to opportunity, there’s a hell of a lot of coincidence out there to take advantage of.

My background as a teacher has always helped me be a better parent to The Boy.  My background as a band director is helping me fight for my son’s rights as I write this.  Even my first crappy marriage has made me a better wife the second time around.

Tonight, I became the lynch pin, the go-between for my autism society friends and my boss’s wife who owns a local restaurant and offered for them to have fundraisers at her place.  And it was so coincidental, and so much good came of this chance meeting of people who happened to know me… There are times when nothing seems random, yet we seem so incredibly lucky.

It’s times like these when I feel like I am contributing something good and important to the world, even though I am not as nobly employed as I used to be.  I’m building a network of good people who can help each other out, and have a direct positive impact on everyone in our community.  It’s a rare thing, but it’s starting to happen… I love opportunity!