Posts Tagged ‘Autism’

The Details

Do you love someone with autism? I do. I love several people with autism actually.

I recently had the opportunity to spend some time with one of my friends who has autism. He is a delight. He’s smart as a whip and says every bit of his always-thinking thoughts out loud. I learned a lot while I was hanging out with him while I listened to the rapid-fire things he was saying to me…and the things he was saying to no one in particular.

In very rapid succession, I learned the following 10 facts from my friend:

#10- It is important to have 100% of the car in the garage before shutting the door. No other % will do. Check the percent.

#9- I have a 9-second garage door. (Meaning that it takes 9 seconds for my garage door to close.)

#8- It is 533ft above sea level in my dining room.

#7- The bathtub in the kids’ bathroom is a hexagon — how could I not have noticed that before? It’s a hexagon. It has 6 sides. It’s not a honeycomb shape hexagon, but it’s a hexagon alright.

#6- It’s best to eat your cheeseburger top bun first, bottom bun next, and patty last.

#5- It’s a good idea to wait and watch the fan blades come to a complete stop when you turn the fan off.

#4- The climbing platform in my backyard is approximately 9 feet tall.

#3- The train that we waited on was traveling at probably 45 miles per hour.  And it had 5 cars.

#2- One billion grains of sand stored in plastic water bottles weighs about 20lbs.

And the #1 thing I learned from my friend: Stop! Notice the details! When I rush through life doing my thing, I miss a lot of details. Slow down enough to take the time to wait for a door to close completely before moving on, or watch for a fan to come to a complete stop. Notice the street signs — and read the good ones out loud just because. When you enter a room for the first time, stop and take it in — notice the shapes and colors. It’s impossible to notice the details if I’m going 100 mph doing my thing.

Remember the saying “Stop and smell the roses?” It’s valid. Stop and notice.

It’s all in the details….

Photo credit: wikipedia.com

 

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Seeking

We are back in counseling, seeking help with how to be better parents to our crew. I’ve mentioned lately how one of our clan is a bit crazy and disrespectful, seemingly enjoying making the rest of us miserable.

We should never have stopped going to counseling. Hopefully we will learn from this the importance of just staying the course and keeping counseling a priority.

Not surprisingly, the counselor agreed that we are experiencing some major attention-seeking behaviors. And when a child seeks attention, apparently it doesn’t matter if it’s negative or positive attention. (That’s so difficult for me to grasp — why would someone rather me be angry and yell at them than ignore them?)

The answer for now is to ignore (if possible) the negative behaviors and make lots of efforts to give positive attention.

So we’ve been trying to give lots of great attention: play the little hiding games he likes to play, laugh hard at all of his jokes, give lots of tickles and touches, really listen when he’s talking, etc.

I don’t know how long it will take to make a big switch from constant disrespect and annoyance to being a little nicer to his family, but we’ve already made some progress, I think.

We will need to continue to remind each other to ignore stuff and not get all worked up. Apparently any reaction from us is reaction enough for an attention seeker and will just feed the habit of seeking and finding negative attention. So we’ve got to be on the ready at all times to ignore, ignore, ignore.

It’s a never ending process, this parenting thing. I’m thinking we could write a book or 3 at the end of it all.

So… what are you dealing with lately? 😉

photo credit: aarontomberlin.com

Safety Sleeper Travels!

Ok, you already know how much we LOVE, LOVE, LOVE Chloe’s bed, right? Well, we love it even more after having traveled with it.

Over spring break, we planned a little get-away for a few days. The day we left we had to leave very early in order to get to our destination by lunchtime since we were meeting my nephew for lunch. I set the alarm extra early so that Paul and Elliot would have time to take down Chloe’s Safety Sleeper bed and figure out how to get it back in its little travel bag.

Unfortunately, my alarm didn’t go off as planned so we got a 30 minute later start than planned. I was worried we’d leave later than we really needed to.

The amazing, surprising news? Before I even realized that Paul had gone to Chloe’s room to take her bed down… before I could even send Elliot back there to help him figure it out, Paul came out of Chloe’s room grinning and holding the bright pink bag that held all the parts to Chloe’s bed. It took Paul less than 6 minutes to take it apart and pack it up! Wow!!

And we were ready to hit the road … on time!

(In case you’re wondering, we made it in time to eat with my nephew! :))

That first night in the hotel, Paul set up Chloe’s bed right beside the window, where you’d put a roll-away if you ordered one. And he set up Chloe’s bed by himself in only 5 minutes! Voila! It was ready to go! It took longer to blow up the twin air mattress that we had purchased than to set up Chloe’s Safety Sleeper!

And it worked like a charm. In the past when we sleep in hotels, I push one of the beds against the wall and put Chloe next to the wall, me in the middle, and Elliot on the other side of me. And then I hardly sleep because I’m squished and claustrophobic between them — and because I can’t go to sleep too deeply for fear that Chloe will escape the bed and possibly the room! But with the Safety Sleeper, I slept more soundly, knowing that she was secure and safe in her bed!

We stayed two nights in that hotel, and then we traveled to Paul’s parents’ house for a night or two. Again, Paul set the bed up easily in their guestroom in under 5 minutes time! For the first time since Chloe was mobile, I was able to stay up with the grownups instead of laying with Chloe to make sure she stayed put.

What a way to travel!! Love it!

And I think Chloe did, too.

The Safety Sleeper for travel? Ummmm, YES!! 🙂

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*Disclaimer: Rose gave me a good deal on The Safety Sleeper and I’ll be credited a bit with every buyer who mentions me because I promised that I would talk about it on my blog. But as most of you know by now, I’m gonna tell it how it is! So you know I’m not joshing or exaggerating the truth. The truth is that the bed is incredible, and I have a feeling I’ll be singing its praises for a long, long time!  If you visit the website or purchase a bed, be sure to let Rose know that I sent you! 🙂

The Bed Tent Saga Update Part Five

Have I told you lately how much we LOVE Chloe’s bed??

We love Chloe’s bed SO MUCH that …. well, I can’t even describe it! The peace. The sleep. The safety. There is nothing like it. There is really nothing like it.

Every night, we zip Chloe in her cute bright pink bed that she loves (that’s a bonus! not a requirement, but a bonus!) and we know that we know that we know that she will be there safe and sound when we return in the morning. No need to go check on her ten times every night. No need to worry if she’s safe.

It. is. crazy. awesome.

And you cannot put a price on safety and peace and sleep. Period.

But TheSafetySleeper has a price. And the price at first seemed way too high. The price at first seemed like a no-go for our family. But please let me urge you to consider and research your options so that you, too, can experience this peace, safety, and sleep. It really is amazing!

First, I must say that we didn’t have the money for the bed. We loved it, and we wanted it, but we knew we couldn’t afford it right now. I am assuming that many of you who are experiencing sleepless nights and are wishing you could buy The Safety Sleeper for your child are in the same boat. I’ll bet you’re thinking, “Great idea, but I will never be able to afford that bed.” So I wanted to talk about that a bit.

I know that some of you have already checked out The Safety Sleeper website and drooled over that amazing bed but have already decided you can’t buy one. I wanted to help you get past that and see if I can help you figure out a way to get one for your child … for your family.

Ultimately, my parents actually helped us a lot! They knew the need. They saw the bed. And they wanted to help us out. And they chose to give us a chunk of money for the bed. So that’s my first idea for you — is there someone who loves you or loves your child who might want to help you pay for the bed? I’m not condoning begging; nor am I encouraging you to mooch off your folks. I am saying that there are people who love you and there are people who want to help you. And those people would maybe love to have a chance to give to you. Before she found out that we had already ordered the bed, one of my best friends said that she had already started the conversation with another friend of ours about raising the money to buy the bed for us — they were planning on pitching in and seeing if other friends wanted to pitch in, too! So … seriously … don’t decide against the bed just yet because your friends and family may want to help you buy it.

Is this an uncomfortable conversation to have? It’s very weird to admit that you have a weakness –being poor! 😉 — and that you need help! I don’t guess I should pretend to speak for us all.  I should just say that for me it is hard to admit weakness and the fact that I need help.

Another thought that Paul and I had was to have a garage sale. We always have junk laying around and piled around that we are ready to get rid of. And as they say, “One man’s trash is another man’s treasure!” Or at least we hope! So a garage sale is a great way to earn some cash. Probably if you asked around and explained the cause of your garage sale, probably your friends would bring some of their junk over for you to sell, too. Depending on how long it’s been since your last sale, and depending on how much junk you have piled around, you could make a pretty little penny to put toward the purchase of The Safety Sleeper.

We even thought of doing some sort of fundraiser event. A bake sale? A silent auction? A lemonade stand? Okay, so those were my only three fundraiser events that I thought of.  But I’m sure there are plenty more that someone with a creative mind could think of. Great ways to make some money.

Here’s an idea that isn’t very popular: get a temporary parttime job. I know, I know — it sounds crazy. But seriously, if you got a parttime job and saved every penny that you made to put toward The Safety Sleeper, then before very long, you’d have a chunk saved up to help pay for the bed, and then you could quit your 2nd job again! Someone do the math and figure out what I’d make in a department store and figure out how many hours I’d have to work to get a chunk of change. Whether you worked enough to pay for the whole bed or just worked enough to pay for part of it, it is a great way to help out financially and to make this bed a reality for your family.

If you go to The Safety Sleeper website, you will see another amazing way of getting The Safety Sleeper (or other equipment, for that matter!) Click on the “Financial Help” button to learn about different organizations that help families buy these beds or other equipment. Fund it Forward is an organization that Rose at The Safety Sleeper works closely with. Fund it Forward and the other organizations listed are great resources for families who can’t sit down and write a check to pay for their child’s bed. Check it out!

There is also information on The Safety Sleeper website about insurance / Medicaid paying for the bed. Find this information under the FAQ section of the website. Since my parents were able to help us buy the bed, I did not go this route. But I plan to start the process to see if insurance will reimburse us for part of the purchase. I will keep you posted on that process. I do know that Medicaid won’t reimburse for the purchase, but our private insurance might. Compared to the fancy medical wood bed that we were trying to get Medicaid to pay for for Chloe, The Safety Sleeper costs nothing! (And it’s portable!) So I’m hoping that we’ll get approved for reimbursement for it.

Are you as uncomfortable talking about money as I am? I think it’s yucky to talk about money. But I LOVE talking about saving money or being smart with money! So there ya have it. I thought that since some of you probably looked at the website a couple of weeks ago and immediately decided you could never get The Safety Sleeper for your child, I wanted to give you some ideas to start your thinker! We love Chloe’s bed, and I really think you’d love it, too. And I know money is tight … I can relate!

I will tell you that Chloe and I have both slept better in the last two months than either of us has in the past SEVEN YEARS! Did I tell you that we love Chloe’s bed??

And now, watch this video of Rose. I told you she was darling! Here she is talking from her heart about her desire to help families get a safe bed for their children.

The Safety Sleeper™ from Heiko Spallek on Vimeo.

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*Disclaimer: Rose gave me a good deal on The Safety Sleeper and I’ll be credited a bit with every buyer who mentions me because I promised that I would talk about it on my blog. But as most of you know by now, I’m gonna tell it how it is! So you know I’m not joshing or exaggerating the truth. The truth is that the bed is incredible, and I have a feeling I’ll be singing its praises for a long, long time!  If you visit the website or purchase a bed, be sure to let Rose know that I sent you! 🙂

The Bed Tent Saga Update Part Four

(The one in which I include lots of videos of Paul and Elliot setting up The Safety Sleeper …)

Anyone still with me? I hope it’s okay to split this story up into several updates. A little annoying, yes. But otherwise the post would have been so long … so thanks for bearing with me.

Since you’ve been so patiently waiting, I want to start this post out by showing you the photo of Chloe’s all-finished, all-put-together, ready-to-sleep-in bed:

We are LOVING it!

(Just for the record: Yes, I know Chloe needs a pretty little bedskirt now … just haven’t made that happen yet.)

Chloe was thrilled and excited while she waited for the bed to be assembled:

Continuing from Part Three, Elliot and Paul worked together to put Chloe’s bed together. It took no time at all. No instructions were needed. Just match the poles and slip on the tent, zip the zippers, insert the mattress, and voila! Great new safe bed!

<insert Hallelujah chorus –opera style>

It was fun to watch Elliot and Paul set up the bed. Paul said the job could easily be a one-man job, but that it was certainly nice to have a second person.

Did you notice Elliot’s comments in the video above about the “worth” of The Safety Sleeper?? If not, start watching at 1:20 and listen to him explain exactly how much he thinks this bed is worth! Again, wisdom from my 12 year old! He knows the value of sleep and safety — he’s been watching our struggle for a long time! And just so you know, we are nearing the month he refers to! That makes this bed worth a whole lot!! 🙂

And I must say that the first night I put Chloe in that bed, zipped it up, and walked out of her room, the peace that flooded over me was so tangible and new that I stopped in the hallway, leaned against the wall, and closed my eyes, relishing in the moment. It seriously took my breath away for a minute. It has been a long time since I felt a peace and a comfort and a confidence that my daughter was going to be safe in her bed. In fact, it had been so long since I had felt that feeling that I honestly did not even remember what it felt like. Actually the last time I experienced that feeling, I probably just so took it for granted that I didn’t even notice the feeling. Or maybe it’s not even a feeling until you’ve experienced the opposite … not sure. But the feeling was crazy awesome!

And I must say happily and excitedly that I have had that feeling every night for the past three and a half weeks. Every night that I’ve put Chloe to bed in The Safety Sleeper, I have left her with an amazing confidence, knowing that she will be safely in her bed until I get her up. It has been truly amazing!

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*Disclaimer: Rose gave me a good deal on The Safety Sleeper, and I’ll be credited a bit with every buyer who mentions me because I promised that I would talk about it on my blog. But as most of you know by now, I’m gonna tell it how it is! So you know I’m not joshing or exaggerating the truth. The truth is that the bed is incredible, and I have a feeling I’ll be singing its praises for a long, long time! If you visit The Safety Sleeper and if you purchase a bed, be sure to let Rose know I sent you there. 🙂

The Bed Tent Saga Update Part Three

(First, thanks so much for your prayers and thoughts for my Dad. He is recovering nicely, and the Lord continues to bring healing to his body.)

(Second, please forgive me for leaving you hangin’ for an entire week –nearly 2, actually. It was not my intention to do so. Trusting that you’re still interested, I will tell you more of the story!)

The end of the story is that we ordered The Safety Sleeper for Chloe — in pink, of course! And the rest of the story is that we totally LOVE it!

Once we decided we wanted and needed The Safety Sleeper, we really needed it right now! Like yesterday!! Waiting was hard!

I found out from my conversation with Rose at The Safety Sleeper that the beds are actually manufactured in Farmer’s Branch, right here in the DFW area. Not only did that mean that we would save the $50 shipping fee, but maybe we could get it more quickly. Rose had also explained that for the most part, the beds are made as they are ordered since they do so many special orders. Pretty cool to think of a bed being made especially for your child! Sometimes they do make beds ahead of time and have a small inventory.

We placed our order and then tried to be patient. It’s hard to be patient for a few days while you are every night trying without success to contain your child. But before we knew it, Rose let us know Chloe’s bed was ready to be picked up. Paul swung by after work the next day and picked it up. We had to force ourselves to eat dinner before opening up the box!

After dinner we all went to Chloe’s room for the big set up!

First impressions? We were IMPRESSED with the quality! Everything felt like it was the best of quality! Well, I must say that Paul and I were very impressed; Elliot quickly said that this thing was not worth the money! Funny boy! (Stay tuned though for his follow-up comment!)

The zipper is a beast! I don’t see Chloe’s little ice-pick-for-fingers busting that zipper! The mesh is some thick stuff! Unless we accidentally put her to bed with a pocket knife or wire cutters (Ha!), then I don’t think she’ll be ripping that up any time soon. The canvas … I don’t even know how to explain how thick and hearty it is. It is amazing quality! There is seriously no comparison to other products we’ve tried. No comparison.

After opening the box, we quickly discovered that the bed did not come with instructions for set up. (I’m assuming that usually they come with instructions … just an oversight.) I quickly went to the website to see if they had instructions there. What I found was a How To video! Awesome! When I told Paul he should go watch the video, he, of course, informed me that he could just figure it out. A man thing, right? 😉 And he got to work unpacking all the pieces.

 


It took no time — even with no instructions — for Paul and Elliot to put the bed together. Easy Cheesy, Seriously!

I’ll tell you the rest later. I will honestly try not to leave you waiting for a week! For now,  just know that we have put Chloe to bed every night for the last three weeks and have not worried one wink about her. She is in her bed, and she’s staying in her bed. She’s happy in her bed. And her bed is so cute! 🙂

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*Disclaimer: Rose gave me a good deal on The Safety Sleeper, and I’ll be credited a bit with every buyer who mentions me because I promised that I would talk about it on my blog. But as most of you know by now, I’m gonna tell it how it is! So you know I’m not joshing or exaggerating the truth. The truth is that the bed is incredible, and I have a feeling I’ll be singing its praises for a long, long time! If you visit The Safety Sleeper and if you purchase a bed, be sure to let Rose know I sent you there. 🙂

The Bed Tent Saga — Update Part Two

Continued from yesterday . . .  You know, I was belly-aching about how terribly our attempts to keep Chloe safe at night have failed over the years.  I may not have mentioned the hundreds of dollars we’ve spent on this whole endeavor. . . whine, whine, whine.  But then I left you hangin’ with a big ol’ tease??  Remember??  About our exciting discovery and solution for keeping Chloe safe and in her bed??  Ahhh, yes, so you do remember!  🙂

Well, . . . one day not very long ago, I received a comment on my blog.  The comment was from a mom who had the same struggles that I was having.  The comment asked if I had ever heard of a particular bed tent.  And this mom wanted to know if I had heard of this company because she wanted to know about it before they bought it.  And I was shocked when she included a link to a bed that I had never heard of.

Now, let me assure you . . . I have done lots of homework and lots of research on beds for children with disabilities, but I had somehow missed this one.  I immediately clicked on the link, and I immediately fell in love with what I saw!  The bed was amazing! I think I said outloud in my empty house, “I am ordering this TODAY!”

But then I saw the price, and my heart sank.  The price was steep — really steep.  I’ve bought enough of these types of bed tents to know that they are not at all worth that high price.  I realize maybe there’s going to be an exception now and then . . . but so far they’ve all been quite disappointing.  I was very disappointed in the high price and just tried to think about something else.

But I couldn’t get the bed out of my mind.  It really looked awesome.  And from the photos, it looked like it was a decent quality bed tent.  And I was a desperate mama.  And I looked at the link a few more times.  And then I looked at it a few more times.  As soon as Paul got home, I showed him the link.  He was equally as excited to see something that looked so great.  But he was equally skeptical about the high price.  <sigh>

But we couldn’t get the bedtent out of our minds.  It really looked awesome.  So I decided to contact the company and have a conversation about the quality and see if I could get any vibes.

And that’s just what I did!  I called and emailed (don’t remember what I did first) expressing interest in the bed and wanting to talk to someone about it.  I think it was the same day that I heard back from Rose, the owner of the company.  Impressive and fast!

Rose was darling.  She is the mom of a child with a disability who was faced with the same issues we were facing.  But she had an idea and she had a friend who had some great skill and some quality materials.  And this friend agreed to make a bed for Rose’s son several years ago.  I won’t attempt to tell the company’s story here (since you can read about it on their website later), but what happened is that Rose’s friend made a great bed that kept her son safe at night.  And knowing what a common problem this is for families in the disability community, Rose decided to make more beds and start her own company to do so.

Rose talked about the quality of the bed. . . and it sounded awesome!  I complained about the flimsy mesh of the other products I’ve tried, and she completely understood my concerns.  She explained that the first mesh product they used was the mesh that is used on those big ol bounce houses.  I was impressed picturing that high-quality mesh.  But then she said that now they use a heavier-duty mesh than that — the mesh that they use on a tractor trailer to cover and protect his load.  Wow.  Now that’s heavy-duty mesh!  I was getting more and more excited the more she talked!!

Another amazing thing that Rose told me that day was that her son had one of the very first beds that they made several years ago — several years ago — and it wasn’t even made correctly; it was a prototype that wasn’t really even the right size for a twin mattress.  But that prototype??  Her son had been sleeping in it for several years.  Years.  Yes, I said years!!  What??  A safe sleep solution that is going to last years??!!  The cost was looking more and more reasonable all the time.

And Paul and I were beside ourselves excited!  And we had. to. have. one.

To be continued . . .

(If the suspense is too much for you, check out http://thesafetysleeper.com/.  Be forewarned:  you will fall in love! Be sure to let Rose know that I sent you.  And check back here tomorrow for the rest of the story.)

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