Saturday, November 05, 2011

Thirty Days of Thanksgiving

No, it's not about food but gratitude. So every day this month I'll post on Facebook something I am grateful for and then eventually get it posted to this blog. I'll just keep adding to this entry until the month is over.

Day 1: Thankful for the gospel of Jesus Christ. I swear it's the only thing that keeps me sane! He heals all wounds and lifts all spirits if only we let Him.

Day 2: I'm grateful for my husband and his hard work so I can stay home and raise our kids. I'm grateful for his sense of humor and for making me laugh, because it really is the best medicine.

Day 3: Grateful for my children and the opportunity to be a mother. They are such fun, caring, and kind kids. Last night S1 threw some foam craft shapes all over the family room. I asked the other two boys to pick them up while I fed S1. I then went upstairs. I realized this morning as I came down the stairs to wake them up, that there were no longer stamps all over the floor either (S1 likes to chuck those everywhere too). They had cleaned those up also without my having to ask! They got a big thank you when I woke them up.

Day 4: I am grateful to be free, to live in a land of freedoms, to say, do, worship, write and vote as I see fit, to be free to obtain the education of my choosing, free to choose my vocation, and to be free to suffer the consequences of my actions because that is how a person grows. I am eternally grateful to all the service members through history who have laid down their lives, or are at least willing to, to create, preserve and defend these freedoms. I am grateful to their families who work so hard in their absence, have to adjust to their return as a changed person and especially those for whom the separation isn't as temporary. So thank you Grandpa, Dad, Rick, Drew, Gene, Aaron and Robert.

Day 5: On this first wintry day, I am thankful to have a home. Someplace secure and warm to protect me and my family from the elements and temporal storms and hopefully a place a refuge from the spiritual ones as well.

Day 6: Thankful for antibiotics. They made Kara's bout with pneumonia a minor inconvenience instead of a major ordeal.

Day 7: I'm grateful for our vehicles. Having reliable transportation gives me the freedom to get my kids the education that they need and to the doctors they need to see and makes getting loads of groceries home very easy! I am especially grateful for our 1995 Chevy Astro van with 200,000+ miles that just keeps going and going (knock on wood).

Day 8: As I sit here listening to the hum of my dishwasher, I am grateful for electricity, hot, running water, and modern conveniences. I am thankful to not have to wash my clothes or dishes entirely by hand, cook over a fire or run outside to use the necessary. What a blessing!

Day 9: Today I am grateful for the right to vote. Especially for all the women who fought so hard for women to have that right. Even if the people/issues I vote for may not always win, at least I am able to make my voice heard.

Day 10: Grateful for my parents. They gave me life and the gospel. There are no two greater gifts. Plus they love me, no matter what.

Day 11: I said it in an earlier gratitude post, but I'll say it again. I am so thankful for all those who serve in our country's armed forces. They sacrifice so much so we can sleep in peace at night. Happy Veteran's Day. If you know a veteran, make sure they go to Applebee's and get a free meal!

Day 12: Grateful for a good numerical memory so I could call all my peeps when my van had issues on my way to carpool. Memory not so great at remembering to bring the cell phone (since I was hauling D1, S1 and trash out the door all at the same time) to carpool.

Day 13: I am thankful for good friends. They pick me up when my car goes kaput, drive my son to/from scouts, listen to me when I need a listening ear, go with me to midnight showings of chick flicks, like my posts so I know they are really still there, come in from out of town and meet me at Costco for lunch, and help me out when I need someone to watch kiddos. So to all my friends, thanks so much for all you do. You help keep me sane!

Day 14: I am grateful for education, both spiritual and temporal. I may not use a lot of Marine Biology in my current occupation, but I do use what I've learned in raising, what I hope, are good kids.

Day 15: I am grateful for modern medicine. "They" may not always get it right, but when your one kid has to see not only his primary care physician but also a neurologist, a neurosurgeon, a gastroenterologist, an endocrinologist, a pulmonologist, a geneticist, and therapist for speech/OT/PT, you develop an appreciation for what they can do. I just always try to remember that there is a reason they call it practicing medicine.

Day 16: I am grateful that my husband has a job and works in a profession where he can have a steady job, and that it pays most of the bills!

Wednesday, November 02, 2011

Bedtime Sweet Bedtime

Kids are so funny. We were all downstairs in the family room (and the boys room is down there too). It was time for bed, so S2 and S3 clambered over each other so they wouldn't be the last one in to have to turn off the light. I carried D1 to the stairs and told S1 it was time to go upstairs as I turned off all of the lights. He was trying to turn them back on so I set D1 down by the stairs and told her to go upstairs while I dealt with S1. Instead she stood up and took off walking in the pitch black to the boys room. And she made it, even climbing over the mini trampoline. I guess she was drawn by the residual light from the night light. S1l followed her in and laid down in bed with S2, said good night but then got up to play with the night light. So I unplugged it and he decided to go up the stairs. As I carried D1 out of the room, she kept saying, "Shhhhh, Shhhhh, Shhhhh" with her finger up to her mouth. They all just made me smile.

Wednesday, October 26, 2011

What a Good Little Helper Part 3

Today when S1 and I were going down the hall, we came upon D1 sitting in the middle of the walkway. As I watched to make sure no one got their toes or fingers smashed, D1 purposely dropped her pacifier. S1 noticed she had dropped it and immediately bent over, picked it up, and sweetheart that he is, tried to put it in her mouth, and tried again when she turned her head, and tried again. At this point I had to intervene to take the binky from him before D1 had it stuck in her ear/eye. He then carefully walked around her and on his merry way. But so proud of him that he'd try to help her, what a good brother!

What a Good Little Helper Part 2

S1 totally cracks me up. Last night Dave was going to go pick up a prescription and I was going to Wally World. S3 was going to go with me and S1 was going with Dad. S2 is old enough and mature enough to stay home with D1 for half an hour while we ran our errands. D1 wasn't feeling well and we didn't want to take her out and it was getting late.

I went down the stairs to tell S1 that he was going to go on a car ride with dad. He, of course, went happily up the stairs. But then he started trying to drag me to the door. I told him he was going with dad but he saw me with my wallet and was not letting go. That's when he noticed D1 sitting on the floor in front of us. He dragged me over to her and pulled my arm down towards her. When I didn't pick her up, he proceeded to bend over and take her by the arm and lift it up to my arm - which he still was pulling down. Apparently he's figured out that she goes where I go so if I was going to take him anywhere, he'd better get sister first! So proud of him.

Sunday, October 23, 2011

Top Five Reasons You Should Never Piss Off an Autism Mom

This list is so true, every single one. I try to be as civil/polite/Christ-like as I can but some days are certainly harder than others. Here's the original link, but I copied it below with some minor adjustments to eliminate the foul language (changed words are in bold and italics). But here is the link if you want to go to the original article or check out the website.

http://laughingthroughtears.com/2011/10/21/top-five-reasons-you-should-never-piss-off-an-autism-mom/

"We’ve all been there. Every autism mom has had at least one encounter with some insensitive jerk who insulted our children or criticized our parenting. It might have been the perfectly groomed soccer mom who said your child was merely spoiled, or maybe the old biddy that told you to take your screaming kid outside even though you were already dragging him out the door in a Fireman Carry, or maybe just some random mean guy who muttered, “This is why I hate kids” under his breath while your child happily flapped past him.

Usually we just have to mention “autism” and the critics slink away, embarrassed and with their tails between their legs, but every now and then you meet somebody who is such a huge punk they don’t care if your kid is autistic, they just care that your child’s noise/stim/existence is annoying to them, and they don’t hesitate to tell you about how obnoxious your child is and what a terrible job you’re doing raising him.

Sometimes their callousness shocks us silent, and we sit in the car afterward, thinking of all the retorts we could have made. Sometimes we take the higher ground and walk away, and sometimes we dig in and defend ourselves. (And sometimes we defend ourselves loudly and with many obscenities, but that witch in the bookstore deserved it!)

These people who attack us are horrible because they have no empathy. They’re shallow people who probably lead miserable lives devoid of depth and meaning. They need to learn compassion and respect, but mostly they need to learn to fear us, because autism moms are not to be trifled with.

Top Five Reasons You Should Never Piss Off an Autism Mom

Five. We’re Already on the Defensive
What? You think you’re the first person to think I’m a bad mother? Get in line. People have been assuming I’m a bad mother for the last five years. I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid? No duh, Sherlock – this panel of physicians and psychologists agrees with you. Tell us something we don’t know. Have something new and clever to add? No? NO? I didn’t think so…

In other words, we have experience with punks like you.

Four. We Are Not Socially Well-Adjusted
We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society. We have cut ties and discarded the family and friends who couldn’t handle our situation. We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate. We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words. We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap? Yes. Good choice.

Three. We Know How to Fight
Autism moms know how to fight because we practice. We fight all day long. We fight with doctors about treatment, and then we fight with insurance companies to get it paid for. We fight with the state over services and we fight with schools about our IEPs. We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing. We fight with our children to make them keep their pants on in public. Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?

Two. We’re Already Angry
Autism moms carry huge amounts of unprocessed rage just below the surface. We’re mad at God or the universe or fate or whatever it is out there that gave our children autism. We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children. We are angry about the loss of the child we were supposed to have, and we never truly stop mourning. We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did. We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place. We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?

One. We’re Sleep Deprived
Some of us haven’t had a good night’s sleep in years. Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted. We’re muddled and short-tempered and irrational and crazy. Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you. Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom."

So if you wonder what ever happened to me because I'm different than I used to be (like more uptight), now you know. Thankfully I have the gospel of Jesus Christ to help me deal with lots of the issues that come up as an Autism Mom, but it doesn't mean I don't have issues!

Saturday, October 22, 2011

I'm Not Backing Down

I'm not going to name names, but I hate it when people try to not accommodate S1. I'll be vague because although I don't think the offendee will read this blog, it's not just them, it's the way people in general generally deal with those with disabilities-especially with mental/cognitive ones. They don't consciously say, "let's exclude S1", but they don't think about what will be needed to include him. Then at the last minute, accommodations can be difficult to make.

It's something he's supposed to participate in. Just because you are going to have to make some minor adjustments to make room for his helper, don't expect me to back down and say "Oh, we'll just keep him home since it's so much trouble" because it will make things easier for YOU. It should have been part of the plan from the beginning. Because you know what, it's not about you, it's about S1 and what he is supposed to be doing. I know you may be stressed, but this is not the way to relieve your stress. I guess they don't realize how many accommodations and adjustments I've had to make to my dreams, hopes, life, and goals, how I've had to reorganize my entire life. If people did, they'd never behave that way.

Let me make it clear, I was never told nor asked to keep him home. However, that is what I was feeling pressured to do in not so many words as we politely went back and forth over the situation. But I held my ground about his participation. Maybe it was all in my head, but I don't think so. It's also hard because I don't know this person that well, but I will be over the coming months. The person is also new to this job so they are still learning-which is why even though I'm not super happy about having to be so firm (I really don't like confrontation, but I'll do it if it's needed), I don't hold it against them or have any hard feelings. In fact, they've been very attentive and trying to learn what S1 needs so they can better serve him, not to mention getting to know our family and what we need. It's just a situation that we have encountered over and over again with family, the school district, and programs/peoples in general. I just dislike having to teach people all the time. Especially right now when I am so worn down and tired and waiting for marching band to be done!

Thursday, October 20, 2011

Roller Coasters-The Faster and Higher the Better

So today the kids didn't have school so we took them all to the local amusement park. When asked if they had a good day, S2 replied, "It was awesome!" S3 felt the same way. I assume S1 was also in agreement as he didn't want to get off of any of the rides and when he did go down the exit ramp, he was all hippity skippity. We meant to get to the park early but it was a vacation day for us too so we slept in a bit, had a leisurely breakfast and by the time we got our act together and to the park it was time for lunch.

We hit up the Subway next to the park for lunch only to discover that they only had two foot long breads and one six inch bread left! Apparently they were hit a lot harder than they expected and the bread that was baking wouldn't be ready for another 25 to 30 minutes. So we cleaned them out of the rest of their bread. We ate in the car and finally headed into the park shortly before 2 pm. When we first entered we hit all the kiddie rides. D1 had fun watching everyone and everything. S3 was afraid of everything and we had to make him ride even the kiddie rides, which he, of course, ended up liking. S1 would see a ride, get all excited, start running to it, see another ride, change directions, repeat. He had a hard time when we would try to get him to the first ride, reminding him he wanted to ride it, promising we'd go to the other ride next. Then there was waiting in line. Since it was a Thursday, the lines were rather reasonable but it was still hard for him to have to wait at times. It was better with some rides than with others. As time went on, S1 did better with staying focused on the ride we were going to and waiting in line. The best part was that when he was having a hard time leaving a ride, they let him ride twice. The park's policy is that disabled guest who have difficulty with loading/unloading can ride with their parties twice in a row. His difficulty isn't physical but cognitive, so that was great they let him go twice.

We did have one major meltdown when the little train went by. I was trying to get him to the train house so we could ride it, he was trying to follow the train - which was going in the opposite direction as it had just left the station. I tried distraction with fruit snacks, singing, etc but finally Dave just had to pick him up and carry him. Once S1 could figure out what we were actually doing, he calmed down and waited for the train. D1 went on the train too and had a lot of fun. Dave and I liked seeing all the animals (like a mini-zoo) along the way too. She loved looking around at everything and everyone.

Since it is almost Halloween, the park was all decorated and had special events. The boys loved those. D1 eventually fell asleep and took a nap in her stroller. But she didn't fall asleep before she rode on the carousel, tug boats and train. The only real snafu was that all the boys went to get on a ride and I stayed with D1 to feed her some dinner. Well, S3 decided he had to go to the bathroom and would skip the ride so Dave sent him down to me. Only S3 didn't come to me. When Dave and the other boys got off the ride, Dave asked me where S3 was. I told him I had no clue. Well, by this point in time it was about 7 pm. It was dark, it was getting cold (we didn't bring jackets because we didn't think we'd be there that long), we hadn't had dinner yet and now S3 was missing and S1 was starting to melt down because of all of the above (tired, cold, hungry) and he didn't want to leave the last ride. So I left Dave with S2 and D1 while he looked for S3 and I took S1 to go on another ride. He finally found the one he wanted but he was having a hard time waiting in line and was making some noise and crying - with tears. S1 rarely cries with tears so I knew he was getting close to melting down again. Luckily the closer to the front of the line we got the calmer he became. Standing in front of us was a group of 8 teenagers. They started to interact with S1 and he even took one girls hand and had her counting down with him. While in line with S1 I saw S3 heading back to where he'd last seen his dad. I called out to him and he ran over to me. I started to call Dave but then S3 and I could see him so I sent him over to Dave -thank goodness for cell phones! Turns out that I really just have very independent kids, because S3 was just fine. He had to go to the bathroom, he knew where one was so off he went. And then he was coming back. Simple right? Anyway, S1 was content after his last ride and with some redirection we made it out of the park without any further incidence.

So, what did we learn from this?

1. Always bring the leash. When S1 is melting down, there is no physically holding onto him, he's too wriggly and strong. It's much easier to hold the leash while he wriggles than to try and keep a hold of his hand while he is running away. When he's on rides you can stuff the loose end into his pocket or wrap it around his wrist several times and tuck under itself to keep it from hanging loose.

2. Bring lots of snacks. Even though he ate lunch before we went in, and I brought a few things for S1, his later difficulties could have been toned down, if not avoided if he wasn't hungry. We weren't planning on staying so late but sometimes you're having too much fun to stop! Plus the other kids would have liked some fruit snacks too.

3. Bring a sweatshirt. We didn't plan on staying so late so we didn't bring anything. And I didn't want to haul around something we wouldn't use. But cold, tired kids-hungry or not- are not as much fun as warm, tired kids are.

4. Start with the big kid rides first. When we arrived, the park wasn't that full. But we hit the kiddie rides first because that's what we came to first. So by the time we got to the big kid rides, the lines were longer. More teenagers come to the park after dinner time and more of the little kids go home at dinner time. So we probably could have gotten more rides in had we done the real rides first and the kiddie rides last.

5. S1l loves it all. Okay, I already knew this. But it didn't matter which kind of ride it was, S1 loves them all. Whether it was a free fall, straight up or down, spiral, loop, sharp turn or spinning, S1 enjoys them all. I was worried about a couple of the rides and his head bouncing around, but then I saw little four and five year olds getting off the rides with their parents and felt that if they could handle it, certainly S1 who is almost twelve could.

We left the park and got everyone into the car. We headed down the road and stopped at the first exit with a fast food place. Everyone ate as we drove down the road as now it was almost 8 pm. No way was I taking tired, hungry kids into a restaurant of any kind. Especially S1 who under optimal circumstances has difficulty behaving well in a restaurant and actually eating, forget about it when he is tired beyond belief and about to crash. Within five minutes of the food being consumed, everyone was asleep except for myself and Matthew. But I lost him too about halfway home. Since everyone was asleep when we were nearing home, I stopped at the grocery store to get a gallon of milk so we'd have some for breakfast. Due to the milk stop and traffic from an accident, it was 9 pm when we got home. We got everyone out of the car and into bed ASAP.

It really was a great day and it made everyone happy to see how happy S1 was. He really had a blast. I can't wait to hear what he has to say someday. Hopefully it's not, "I can't believe you did that to me. I hated it, it was torture!" Because really, who knows, maybe his laugh takes the place of scream, like his wires got crossed. But with how willingly he gets on the rides and sometimes refuses to get off, I'm pretty sure he loves them!

Wednesday, October 19, 2011

What a Good Little Helper

Took the four kiddos to "respite" at S1's school tonight so I could do some shopping without them. When I went to pick them up, S1 was ready to drag me out the door but I told him we had to get his brother's and the baby first. We went to find them and while I chatted with the lady holding D1 he tried to pull me away again. I said, "No S1, we can't leave baby sister." So he reached up, grabbed D1's arm as she was still being held by said lady (who just adored her) and went to pull her out of the lady's arms! It cracked me up because that means he totally understood what I said and figured he'd speed up the process. Now we just have to work on his approach! My assumption is that he was trying to get me the baby so we could go but I think the lady was loathe to giver her up.

The main reason this tickles me is because I didn't really have to repeat myself for him to understand. I told him we needed his sister and so once he could see her, he tried to get her. Such a good little helper.