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Autism Camp for Eric

I never do this kind of thing here, but a friend asked to pass along the information for his brother in law. And at the end of the day, I only wish I was the kind of person who would do this. Make this kind of difference in a life. It’s heart warming and humbling and I feel like a cut and paste post is the least I can do to help him be that kind of person. We need more people like him in the world.

If you have time, please read the following. Thanks!

I have, since August of 2010, been working with a 16 year old named Eric.  Eric has a higher functioning autism, Tourette syndrome, depression, very low self-esteem, and an array of other mental problems as well.

I have been working with Eric very diligently and have tried very hard over the past few weeks to send him to camp.  The camp that I am trying to send him to is Camp Easter Seals.  The date of the camp is June 26th to July 1st.  For those of you who don’t know, Camp Easter Seals is a camp for children with special needs.

The camp helps them with their social skills and focuses on their needs through different strategies.  There is hiking, canoeing, fishing, swimming, basketball, arts and crafts, and a few other activities that the children will be participating in.  The reason that I am sending out this email is because the camp fee for one person is $750.  There is also a $50 application fee to see if the child qualifies for the camp.  I am going to be accompanying Eric to camp and will be acting as a volunteer while I am there.  The trip down there are back is going to take about 8 hours of driving.  All in all, there is a total of at least $850 that is needed for this camp.

I have been working very hard to raise the money that I need for Eric to go to camp and to cover the other expenses as well.  While I am merely hoping to reach the $750 mark, the other expenses would be amazing to reach as well.  I have received many gracious payments via PayPal and one generous donation of $200. This donation has been taken back unfortunately due to some family complications on the donator’s side.

With this setback, I am very short of goal of the $750 and very short of the $850 mark.  If you or another friend or family member would like to donate, I would greatly appreciate it.  If you are unable to donate, I would really appreciate if you could pass this email along or just spread via word of mouth.  I am very hopeful in reaching the goal and would love to send Eric to camp.

For those of you who are familiar with PayPal, my address is alex.spangler@gmail.com and I know that Eric and his family would be extremely grateful for any donation.  I can also take a check written in my name. Once all of the money is reached, I am going to cash all of the checks and then send the money to Camp Easter Seals directly.  If for some lucky miracle I am above the donation mark of $850, I am going to send any extra money to the camp as a donation to them.  If there are any questions regarding the camp or donations, please feel free to email me or call me at 540-840-8878.  I would be more than happy to answer any questions that I am able to.  The website for the camp, in case you are interested, is www.campeastersealsucp.com.

Thank you very much for taking the time to read this email and I hope that we are able to reach the donation goal.  Again, if you cannot donate, please forward this email to anyone that you feel may be willing to donate.

The absolute latest date the money is allowed to be sent to the camp is Friday, June 17th.  If the money is not there by that day, Eric will be ineligible for camp.  Thank you very much.

I hope to hear from some of you soon!  Thank you again.

– Alex Spangler

An Inside Job

Sometimes I think of my current life as being “on the inside.”

I am so completely immersed in my own family culture that I often have a hard time relating to the world at large. Sure – I can navigate a shopping mall or the grocery store as a seemingly “normal” person, but it’s a very Through the Looking Glass experience.

My true reality resides within the walls of my home, with its own set of rules…politics…priorities… All of which are dictated by the four and six year old inmates. I bark orders and shuttle people around town like I’m running the operation – but at the end of the day, I feel a bit like Patty Hearst with a loaded gun.

As I type this, I wonder if they’re asleep yet. Because I can make them stay in their room and keep quiet, but I can’t make them fall asleep. For some reason, this maddens me. I dragged those people up and down the streets of Key West and monitored their splashing in the pool for hours, and STILL at 10:30 p.m. they have the last word. Which is apparently three words: “we’re not tired.”

This is vaguely reminiscent of the first few months after my oldest was born. When people said, “get your sleep now – because you won’t get any after the baby comes,” I wasn’t too worried. Always an early riser, I never seemed to require the eight hours that everyone goes on about. I burned the midnight oil for years at work and earlier in school. What difference would a few nighttime feedings make?

Then I was introduced to Oliver, the baby who woke up every two hours for MONTHS. I have never felt so frazzled – so out of control. It’s such basic thing to control in life – your sleep. Even if you don’t need that much sleep, you still need it. And to have someone else demand that you wake up every two hours will eventually destroy any sense of time that you once had. It wears you down. Makes you feel like you’re losing your mind.

And then you just get used to it.

So it’s all very full circle. First, you decide when you wake up. And then you have kids and they decide when you wake up. Not because they want to ruin your sleep patterns, give you wrinkles and make you think you are going crazy – but because they are controlling their own sleep. It’s nothing personal against the parents – children can’t help it if we are required to feed them as newborns and monitor them as toddlers. Our sleep patterns are just innocent bystanders who were stupid enough to wander into the line of fire.

It’s the first step in a non-hostile takeover. Sleep becomes a privilege as opposed to a right. And you don’t even notice the shift take place. You simply assimilate.

Having a special needs child escalates this process since you already have to adapt to their personal quirks and deviations from the norm. How often have I felt the judging eyes on me as I carry my huge six year old out of a public place, attempting to sooth his agitation with murmured shushing, typically reserved for much smaller children… Like most other mothers I mentally give them all the finger and blink away traitorous tears. In convincing myself that the rest of the world can go to hell, I further descend into our own brand of normal.

And I’m not saying that’s a bad thing. But it’s somewhat isolating.

Sometimes you find other people with similar families though. You may look across a restaurant and lock sympathetic eyes with another mother who can’t seem to keep her children in their seats. Or you could meet them through school functions. Either way, these friends are absolute gold.

They don’t judge, but provide a line to the outside world. They entertain their own element of crazy – but the small differences remind you that you didn’t always threaten to throw out the Wii to get people’s attention.

Suddenly, you are reminded that the pretend world you walk through each day is in fact, real enough to the other pedestrians you pass. And that you may be able to rejoin that existence on some level. But it’s hard. You’ve been programmed – indoctrinated. You have way too many coping mechanisms in play.

But I do believe it’s possible. And it it’s probably inevitable over time. Children get older. They change – require you less – leave you to your own devices. Security becomes a bit lax and there are many more opportunities for escape. No one else will ever be able to break you out. But with planning, timing a even a little luck, you can orchestrate your own early release.

Exactly how do you do this? I’m sorry – do I sound like I have any idea? At the moment, I am living at ground zero of Crazy Town. It’s going to take a while for me to find a path out.

Besides – every family is different. So even if I did have a plan, it wouldn’t be of any use to others. We all have to find our own way.

When I first sat down to write this, I was feeling rather defeated. Taking children on vacation throws a bright spotlight on bad behavior, ineffectual parenting and general dissembling. Taking children on vacation by yourself is pure madness. And the hubris of it all just begs for a spiraling descent into self doubt. Who did I think I was, anyway? It’s one thing to take care of three children by yourself in the comfort of your own home – but when you’re on vacation, everyone is supposed to have FUN.

As far as my own little band of freaks is concerned, the current ratio of parent to child is achieving only a basic level of survival. Fun has been sporadic – and taken in turns. BUT there has been some fun. And that’s something.

Writing about life on the inside has helped. It’s made it all seem so commonplace – so obvious. And temporary.

Apparently, the children haven’t done ALL of the whining this vacation… I needed to peek out the window and see the rest of the world for what it really is. A mass of crazy families. Uncounted people who feel like they’re just surviving the day. Feeling defeated. But also having some fun.

I don’t put pressure on myself to make everyone have fun when we’re just moseying through our daily life. Why bother doing that on vacation?

As my children get older, I will slowly break out of our survival compound. There will be more breaks – more contact with the outside world – more fun. But in the meantime, I have to break out of my funk and just appreciate the smiles, the laughter and the ten minutes here and there that I can read a book while the kids play in the pool. I have to lighten up. And remember that there is more to life than arguing with picky eaters.

So I’ll start with sleep. Now that everyone is FINALLY (I checked) out. I think I’ll join them. And the only thing on my agenda for tomorrow is to step outside, feel the warm sun on my back and maybe even have a little fun.

For Japan With Love

You may have already seen this on The Big Piece of Cake…if so – no need to read any further, I’ve copied and pasted the whole thing. Seems a little silly to make it look like two completely different posts right? Or maybe I’m just lazy…you be the judge.

I really did mean to post more this week…but I’ve been a bit scattered. I’m blaming it on the drugs. Or the kids. Or both. Either way – people who have abdominal surgery have a full week to milk it for all it’s worth, right?

At any rate, I won’t be posting anything new this week…

Tomorrow I’m participating in a bloggers day of silence in support of the fundraising efforts of For Japan With Love which will be donating what’s raised to Shelterbox. Shelterboxes are given to disaster victims and contain many of the tools that they need to survive. Have you donated to the relief effort? Even if it’s just a small gesture, very dollar helps.

So, I’ll see you next week with no excuses (or really awesome drugs – sob) to fall back on.

Editor’s note: I changed one word. Just in case you noticed and thought, “wait a minute, I thought she copied/pasted. Now I’m all confused…” I don’t want you to lose any sleep over this. That’s just not my style.

For Japan With Love (and some of my usual excuses…)

I really did mean to post something this week…but I’ve been a bit scattered. I’m blaming it on the drugs. Or the kids. Or both. Either way – people who have abdominal surgery have a full week to milk it for all it’s worth, right?

At any rate, I won’t be posting anything new this week…

Tomorrow I’m participating in a bloggers day of silence in support of the fundraising efforts of For Japan With Love which will be donating what’s raised to Shelterbox. Shelterboxes are given to disaster victims and contain many of the tools that they need to survive. Have you donated to the relief effort? Even if it’s just a small gesture, very dollar helps.

So, I’ll see you next week with no excuses (or really awesome drugs – sob) to fall back on.

Surgery Today

I set this to post automatically today since I will have been at the hospital since 6:00 a.m. this morning. Nothing serious. But still, yuck – surgery.

Wish me luck! I’ll be picturing this beautiful image I spotted on my photographer friend, Robin’s blog:

I really am a big baby – but I promise that I’ll stick with the pretty stuff here and do all of my post-op whining on The Big Piece of Cake.

Have a great weekend!

Check out more of Robin’s work on Around the Island (and of course, her Etsy shop!)

Summer Ennui

I don’t know about you, but the last thing I feel like doing right now is blogging. Last week was easy because I was basically chronicling my every move for the three days I spent at BlogHer. But now that I’m back and spending my days at the pool, herding children and trying to catch up on everything I need to do before Labor Day, I’m feeling decidedly boring. Or bored. No – not really bored with my every day life…but I wouldn’t want to watch a movie about it either.

I’m taking the kids up to NJ for the weekend to stay with my aunt and then we’ll have two full weeks of daily auditory processing therapy for Oliver. While the therapy itself is only 1.5 hours, adding the hour+ commute there and back makes for a rather grueling day. And of course the twins get dragged along for the ride.

As much as I am looking forward to an end to the seemingly endless days, I do feel sad about September. No more afternoons at the pool, no more lazy mornings and no more pretending that my oldest isn’t starting KINDERGARTEN this year. With the bigger bus, and homework, and working with his IEP. Oh how I dread thinking about that IEP… AND that the twins are starting co-op preschool (meaning I’ll probably be there fifty percent of the time). Life will be busier and full of immediate responsibility.

I’ve never been good at standing on the edge. I do best just jumping in. So I think I’ll just spend the last two weeks of summer vacation with my ears plugged and my eyes closed to the impending season of “have to.” I’ll sit in the sun and watch my kids continue to teach themselves how to swim (seriously – they’re doing that) and keep meaning to get to that mountain of laundry folding tomorrow.

It won’t hurt to stay wrapped in my summer cocoon a little longer. To get to the “have to’s” later. Because tomorrow is right around the corner. It’s soon enough. And just because I can, I’ll channel a strong Southern spirit of tomorrow being “another day.”