Sleeping Quarters for the Autistic Wanderer

B is 7 years old next month. He is a wanderer. If you let him loose he would be halfway to the state line before you could catch him. This has always posed a bit of a problem at bedtime. How can you keep your ASD wanderer safe at night and still get some sleep yourself?

There are several bed tents on the market targeted toward this problem. All of them are crazy expensive. We started out with the Nickel Bed Tent. It sells for $159.99. It was a good concept poorly executed. To start off with the shipping is slow as Christmas. Once we finally got it they sent us a pink one instead of a blue one. I paid more shipping to send it back and they shipped me the correct one. Putting it together is relatively easy. It has the shock corded poles like the ones that come with regular camping tents. I was immediately skeptical of the durability, but I kept an open mind. B was 3 at the time. The tent is a pain to take down and put back up if you need to wash it or travel with it. The screening is like tissue and runs like pantyhose at the slightest poke. Its also very closed in meaning the visibility from the inside is limited. The worst thing is that it is so short. There really is no way to grow up with it. If we still used this at age 7, it would be like B was sleeping in a sausage casing. The Nickle Bed Tent is a huge waste of a lot of money, and was destroyed by a 3 year old in less than a year.

I didn’t even try the other tents sold under the Autism umbrella. The Safe Sleeper looks awesome, but its thousands of dollars. Same thing with the Noah Bed which is about $5,000!

Last year I posted about traveling with the kiddos. There’s a snapshot of the tent we used for a long time. Its a SansBug. Its marketed to campers who need protection from malaria infested mosquitoes. Its under $75, and although we went through 3 the first year, it was better and cheaper than the other tent we tried.

Last year while trying to find a cheaper price on the SansBug replacement, I came across the tent we use now and will continue to use forever if they keep making it. Please God, let them keep making it! Its called Gnat Guard. The mesh is tougher than the SansBug by far. We have only had to replace it once this year, and that was my fault because I let B take a car to bed with him and he poked an edge through the mesh.

Here is the setup we have now. Both kiddos are sleeping in these beds. L likes to copy big brother so we let him even though he doesn’t wander and doesn’t need the tent.

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I bought a memory foam mattress to go inside. I laid the tent on top of the mattress and traced the shape with a marker. I then cut the foam with an electric turkey carver. It fits snug inside the tent with a regular twin sheet. I bought a metal platform bed and used the tie down loops on the tent to secure the whole thing to the frame with 550 cord. I also made sure to cut off the zipper pulls on the inside and the outside. The outside ones were replaced with a key ring loop and a carabiner. Its secure. No one has gotten out yet. They sleep very well, and the tent is tall enough that they can sit up and not hit their head. 20160423_085520.jpg

Here are all the Amazon links to everything we have here.

http://www.amazon.com/Gnat-Guard-Skyview-Free-Standing-Mosquito-Net/dp/B00MWBYL0A/ref=sr_1_1?ie=UTF8&qid=1461413856&sr=8-1&keywords=gnat+guard

http://www.amazon.com/Master-Ultima%C2%AE-Comfort-Memory-Mattress/dp/B005G02ESA?ie=UTF8&psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s00

http://www.amazon.com/Assemble-SmartBase-Mattress-Foundation-Replacement/dp/B00R6OXFAK?ie=UTF8&psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s01

The entire thing -tent, mattress, bed frame- was around $200. Its tough as nails. The tent folds up fast for travel. If we are on a trip we use an inflatable camping mattresses inside the tents. It works perfectly, and the kids sleep just like they are at home. It alleviates so much anxiety for them because its just like at home.

Let me know if there are any questions. I would love for every parent of a wanderer to be able to get a better night’s sleep. This set up saved us and it only took me 2 years to figure it out!

 

100 Days to Healthy: Day 20

Its been 20 days since I started my 100 days to healthy. Its been a tough couple of weeks so I wasn’t able to post. I am having some major side effects with the Tamoxifen. They will be running some tests this coming week, and I have an ultrasound on Friday. My kids have also be a bit under the weather. So my update is better late than never.

I’m down 5 pounds in 20 days. I have been watching calories and juicing quite a bit. Juicing always makes me feel better. I’ve been taking my supplements and my meds regularly. Aside from the other side effects like joint pain and pelvic pressure and stuff, the Tamoxifen is helping me sleep through the night. I do get a sort of cold spell every day around 4. I don’t know if that’s from the meds, but I suspect it is. I just can’t get warm for a couple hours. Its weird. Cold flashes instead of Hot flashes? I’ll take it!

My hair is finally starting to grow in faster. Its a curly mess. I colored it so its more normal now rather that that ashy grey from chemo. Its still gross, and I can’t wait for it to be normal again!

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Thriving in PA!

Last week was a great week! Its not often in life that you actually get confirmation that your toughest decisions were justified and correct. Friday was one of those days. Every Friday my kids get a little weekly report sent home in their folders. B’s report was amazing! He is repeating letter sounds, using more and more sign language and generally progressing at a rate that no one would have imagined a year ago. The same goes for L. Last year he wouldn’t make a sound the entire day at school. Now he’s using full sentences, learning his colors and close to being able to start reading! Moving to Pennsylvania was the best decision we have ever made. I have zero regrets!

Sometimes you never know if you did the right thing. Sometimes God sprouts flowers on your path and ties rainbows over your kids!

For those families struggling in a sub-par school system with almost no services for your ASD kiddos, my advice is to do whatever it takes to find a place where your kids can reach their full potential. I know its hard. Its devastating to leave everything and everyone behind. It might be hard to leave a job that you love. It might even be hard to find the money to make a move. I can only tell you what we decided to do and how hard that was. We will probably be struggling financially for years to come. We won’t ever be able to buy a brand new car or take a nice vacation, but my precious 7 year old boy said Mama for the first time this year and can sit through a day at school without screaming for hours on end and hitting his head on the floor in frustration. I’ll eat ramen noodles and never get to see a movie in a theater again for just those 2 simple things.

God is good and will always show us a way to get where He wants us to be.

 

Holidays with ASD kiddos and 100 Days to Healthy…DAY 1

Today is officially DAY 1 of my 100 days to healthy. I did eat a chocolate bunny and some jelly beans, but I’m still counting it as DAY 1 because the failures go right along with the successes. I’m going to own the next 100 days.

Yesterday was Easter, obviously. Holidays are hard and a bit sad in our Autism family. You see friends post pics on FB of their cute kids in their Easter outfits hunting eggs and being in family gatherings. We can’t do that here. We buy the baskets or the Christmas stockings, but my kids don’t really get it. I know someday they might, but its still hard. SO, we stuff our faces with chocolate and get to the day after because that’s what you can do. I love my kids. I love seeing them stuff their faces with jelly beans and try and figure out why they got this big basket of treats out of the blue. It was good day all in all. I really have nothing to complain about. Everyone goes back to school tomorrow! YAY!!!!

DAY 1. I managed to juice in between bunnies and beans. Here is my basic juice recipe. I’ve developed this after a couple years of following ridiculous and EXPENSIVE juice recipes from books or online. This basic recipe is a super juice to fight cancer, reduce blood pressure and keep you free from blood clots (side effect of Tamoxifen).

This makes 48 ounces of juice in my masticating juicer

  • 2 big beets or 3 medium or 4 small
  • 1 pound of carrots
  • 2 celery ribs
  • 3 apples (red are sweeter, green are tart)
  • 1 lemon with the peal
  • 2 handfuls of kale
  • 1 cucumber
  • 2 pealed kiwis

That’s it. I drink the entire 48 ounces in a day. If you have some issues, like a cold or arthritis, you can add specific fruits or veggies that help. Pineapple for arthritis, oranges or grapefruits for the extra C boost for a cold. You get it…

For breakfast I’ve been having a flax mug muffin. You can Google one minute muffin or mug muffin and find thousands of recipes. The one I make is about 300 calories. Flax is a natural Aromatase inhibitor for those of us with hormone positive breast cancer. And its huge fiber so you stay full for a really long time.

For protein during the days I add an egg and canned herring or sardines. These are the cleanest and most healthy fish on the planet. Sometimes I will add in chicken. I am cutting out all red meat and white processed stuff as of today. Also the only white sugar is the spoonful in my morning tea. I can’t seem to give that up and why should I? It makes me happy. Tomorrow I start week 1 of the Couch to 5 k. I’m not looking forward to this, but it must be done.

I thought hard today about the last time I felt healthy. The last time I had some high self esteem  and just felt like I could take on the world. It was back in 2007 I think. I had just met Jim, it was before the 2 very hard pregnancies. Obviously it was before cancer, and I was rocking some really great hair. I want to get back to that place where I feel safe in my own health. This is what the next 100 days are about really, finding a healthy lifestyle that is sustainable and one in which I can feel safe in my own health again. Here I am around that time. See, rocking some great hair.Annie 2006

 

 

And here I am 4 months after chemotherapy and the hardest year of my life. 8 years later and really the worst health I have had in my life. And sad hair.12798854_10153985057925419_6118208125415934300_n(1)

I’m hoping to drop 40 pounds over the next 100 days. I’ll be posting my progress on Mondays. Here’s to getting healthy 100 days at a time! And to growing out an awesome head of hair!

 

100 days to healthy

I’ve come out the other side of chemotherapy and radiation. I’m now into the long term meds for hormone therapy. I took Arimidex which was a nightmare of side effects, and now am I taking Tamoxifen. I’ve been on it 4 days and so far so good. So, what now? I need to have a long term plan of health and survival. So I’ve decided to take the next 100 days to get healthy and get some good habits.

Tomorrow is March 28th, which we will call DAY 1. My hundred days will end on June 10th. Over the course of this first 100 days I am going to flood myself with nutrients through juicing and maybe some supplements. I’m going to incorporate foods that block estrogen because my cancer was hormone receptor positive. I’m going to start using the treadmill and learning yoga and Pilates. Most importantly I am going to find time every morning to do a daily devotional and start my days off in the positive light of Jesus Christ rather than the dread of facing another day feeling like crap.

I need to lose a ton of weight. (I’ll post numbers tomorrow). I need to get my blood pressure under control and I need to mitigate some side effects that could occur while taking Tamoxifen. Its a tall order, but I can do it. And it all starts with 100 days to healthy!

Its been a while…

Its been over a year since I have posted, and so much has happened. My ASD kiddos continue to thrive. This was, by far, the best move we could have made for them. As it turns out it was a good choice for Jim and me too.

In June of 2015, Father’s Day, I was getting dressed after a shower and found a lump in my left breast. July 14th I had a mammogram which turned out to be suspicious. July 15th I had a biopsy. July 21st they told me I had cancer. Invasive Ductile Carcinoma to be exact.

When you hear the words “you have cancer” the world shifts off its axis just a bit, and nothing is ever the same. I had the tumor removed on July 31st. It was 1.5 cm, grade 2 with no lymph node involvement. Officially I was stage 1A. I caught the cancer in time, and didn’t delay in contacting my gynecologist, and it saved my life.

My tumor was sent off for Oncotype DX testing, and it was determined that I should go ahead with chemotherapy and radiation treatment. I started 4 rounds of AC on September 8th. I lost my hair. I felt like crap. I survived. Radiation started in January, and as of February 22 I was through with the worst of it. I’m 4 and half months post final chemo and I’m starting to feel more normal. If you can ever feel normal after cancer.

During the past 9 months Jim has been my rock. He has totally taken over EVERYTHING. I never had to worry about my kids. He took me to all my appointments. He was just there for me. You can’t get a better husband and partner than that.

So there we are, mostly caught up. I know its been a while, but I should start posting regularly again. I’ve realized that being a family with autism doesn’t preclude you from other stuff that effects everyday life. I’m still searching for Oz, but this time I have to include in the journey everything that effects us, cancer, ptsd and living everyday life.

New Year, New IEPs

What a wonderful Christmas break full of snow, ice, fun and new beginnings! The boys are back in school finally. Last week was full of snow days and late starts, but it should smooth out a bit over the next week or so. We still can’t get used to how cold it is here, but everyone assures me that by Springtime we will have settled right in. I hope so. It’s uncomfortable sleeping in a parka!

School is going fantastically well for Brody.  He had his IEP evaluation and what a joy and surprise. His teachers are absolutely confident that he will be able to recognize all the letters in his name, know his numbers in sequence from 0 to 10 and have a good start on sorting colors by the end of the school year. We have already seen so much progress.  He is able to consistently complete 4 to 6 tasks without a break and he will sit with his teacher to look at a complete book start to finish and turn the pages himself. He has even spoken 2 words – eat and up – more than once and in context!! I cannot tell you what a gift that is and total confirmation that we did the right thing in moving here. It’s amazing to see God answer prayers right out loud and with such speed and tangibility!! God is great and we are grateful!
Levi loves his preschool class. His IEP is later this month.  He is learning how to play with others and getting over his shyness.  He’s made it to the top of the stairs finally and loves playing in his big brother’s room. Levi is learning to consistently use some sign language, and words are coming more frequently and with meaning. Both our boys are doing so much more than I thought they would in such a short time.
I hope everyone will have a wonderful 2015.  I am homesick a little. Mostly I miss my garden and my chickens. It was worth it. I’ll never regret a single thing we had to leave behind.

I’ll check back in soon!

First Week of Kindergarten!

Brody is down with a fever tonight so I have a couple minutes to catch you up on the school situation. A couple weeks ago I met with the lead teacher of the ASD program at the local elementary school, the speech and occupational therapists and the principal. I went into the meeting expecting resistance to our intentions of having Brody transferred to the private Autism school in State College.  Ultimately it’s a parent ‘s decision, but who wants the conflict, right? I was all ready for a fight, but what I got was a wonderful surprise.  The Autism program is awesome!  They have 90% of what the private school has without the 30 minute commute. The teacher is very well trained. They use the same programs that Barb uses at Gilbert Creek. Really it’s like Brody’s preschool program was given steroids and plopped down in Central PA.
Brody started last Wednesday. We let him jump right into full days from day 1 and he did great. The OT has started working with him to desensitize him to brushing his teeth. They’ve started some food therapy, and he sees the speech therapist every day. The building is secure. I couldn’t see any obvious ways for him to escape, and they have a sensory playroom and a separate cool down room. He gets to go to music class and art. I couldn’t be more thrilled and it’s a mile from our house!
3 days last week and so far there’s been no outbursts or night time sleep disruptions. In fact,  he slept 12 hours 2 nights in a row.  God does love us!
Levi starts the EI preschool program Tuesday. They seem to have a great program for him too. He will go 4 half days a week. It’s a little bit of a drive,  but he will get to see the speech therapist every day, they have an inside play area and they will start him on some food therapy as well.
Both schools assured me that whatever help or equipment my kids needed would be provided as soon as possible no questions asked. We are so elated that things are working out so splendidly for the boys. The move,  that huge drive…it was all worth it!

Finally home in Pennsylvania!

After 12 very long hours ofcdriving yesterday we finally pulled into our new driveway at half past midnight. Snowing and 20 degrees outside and we couldn’t get the keys to work. I’m sure my kids screaming woke up the whole street, but we are so thankful to have made it.

Our truck was delivered at 2 this afternoon, but we were so exhausted we barely took anything out. After that we went to get some supplies at the grocery store and the bank turned off my card for “unusual” activity.  Really? After 9 days of cross country gas and hotels they think food is an unusual purchase? Half an hour on the phone and a million questions later the bank grudgingly turned it back on (insert abusive swear here).

Tomorrow I think the cable people are supposed to show. Then we have to find a laundromat. The kids are so stressed and everything is chaos,  but it’s good to be off the road. Monday we meet with the school. I’m gearing up for resistance there. I’ll let you know how it goes.

The house needs more work than I anticipated.  It smells like something rolled on the carpet in the master bedroom before it died. I think it’s a lost cause and will need to be replaced. The bathroom floor seems dodgy too. There’s always more work and I find myself wishing life would sometimes go more smoothly. As in the immortal words of Scarlet O’Hara…I’ll think about that tomorrow.
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Amarillo smells like cows…

We last left you 4 days ago in Tonopah. It’s just been pandemonium since then. We stopped in Vegas to do some laundry and let the kids run off some energy, but we were not done before it got dark. We hit downtown Las Vegas on a Friday night where construction detours led us into an unseemly part of town in which COPS would be wary of filming. Homeless men huddling around barrel fires under the underpass, street walkers of all shapes and soberness…you get the picture. After getting stuck at a traffic light that refused to change to green, we ran the red and finally found the highway.

Being so close to the Grand Canyon we opted for a short detour the next day to get in some sight seeing and cross a wonder of the world off the bucket list. Besides we really needed a break. We found a nice hotel right before the canyon exit and tried to get the boys settled in. It was late and it wasn’t too bad. After checking out early the next morning we headed to the Grand Canyon. It was an epic fail!

After paying $50 (yes you read that right) to get 2 cars into the park, Brody decided he needed to have a meltdown. Not just any everyday meltdown…Chernobyl. We cleared a space in the bed of the truck, got out snacks and toys and the boys ate spray cheese on Ritz and calmed down just a bit. Jim and I took turns getting a 1 minute peak each at the canyon to snap a picture and high tailed it out of there. That comes to a $1500 an hour canyon view.

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Still screaming we headed ever eastward. We stayed in some pit on the side of the highway at some ungodly hour in some town somewhere. We hatched a new plan. 4 hours daylight driving then hotel for 8 hours then 4 hours night driving. Brody seems to calm way down in the car after dark. We got started before lunch and had it all planned to hit Santa Rosa, NM around dinner where we would stop and rest until just before dawn and take off again. The universe had other plans.

After hitting a rest stop about 55 miles from Santa Rosa we got cocky and felt home free. When we got back to driving, traffic stopped. It took 2 hours to go 10 miles. I checked out the traffic report and all it said was construction slow down. We got off at a gas station thinking to top off and get some info, but everyone else had the same thought. After conferring with the guy at the checkout and some other drivers we found out ice had basically shut down interstate 40. We weren’t going anywhere.

We were emptying all the contents of the truck cab into Jim’s jeep so we could squeeze 2 adults, 2 kids and a hundred pound dog into the Avalanche in order to huddle in for a long night. The temperature was dipping into the teens and we were trying to hurry when it happened… one of the boys hit the lock button and the keys were sitting in full view on the dash. Panic settled over us like a demon and I’m ashamed to say Jim and I turned on each other for a few minutes. Luckily I remembered there was a spare key stuffed into a tote buried in the bed of the truck. We found it, no one died, but this is where I have to give epic points to my dear husband. For while I was cursing his guts he didn’t decide to smash a window or divorce me, but rather quietly finished clearing us space and let me weep in silence. I love that man.

After about 5 hours we noticed the parking lot start to clear.  My gps went from red to yellow and at midnight we headed the 43 miles to Santa Rosa and got just about the last room in town and passed out while Brody was still running back and forth through the room. I don’t know when he gave up, but when I woke this morning he was curled up next to me in bed.

We only made it 2.5 hours down the road before both Jim and I started to get dangerously sleepy. We stopped here in Amarillo about 5:00. The boys are still awake. They can’t seem to wind down. I’m hiding in the bathroom wishing for a tall vodka tonic knowing tomorrow will be another day of being chased by the wicked witch of the west and hoping I’ll wake up in Kansas or eh Pennsylvania and this will all be a bad memory. Still, I got to see the country’s most expensive…I mean largest canyon.

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