Tuesday, July 22, 2014

Details

One of the many reasons I love having this blog is that YOU (yeah, you!) chime in with helpful information. THANK YOU to the person who left the comment about the Incredible 5-Point Scale (this looks like it could be a very valuable tool for us!) and also to Heidi for the info about the potty monitor, the Malem Bedwetting Alarm (totally trying this during the day with E). We are so open to suggestions and advice, so we appreciate input! Thank you!

I read some valuable information in my NLD book today. I just have to share some of this, as it rings so true with Elijah. The below excerpts come from Helping a Child with Nonverbal Leraning Disorder or Asperger's Disorder: A Parent's Guide by Kathryn Steward, PhD. Sorry if this bores you, but so much of it NAILS Elijah's struggles, so I find it fascinating.

 
Mentally, Elijah often seems to be moving in slow motion, especially in fast-paced and chaotic environments. He gets the glassy-eyed look that lets me know he has had too much and is having a hard time processing the world around him. This is usually followed by: behavior. He also has ALWAYS focused on very specific details...the wrong details of any given scenario. He has done this since he first learned to speak. Whether it's a real-life situation or a book we are reading, he asks questions that are irrelevant to the big picture. As an example, if we drive by a bad car accident, he will say, "Who made that car crash? Was it a bad guy? What is his name? Where does he live? Does he have kids?" Instead of being concerned for the people involved and the emotional aspect of what has happened, he becomes obsessed with unimportant details and that prevents him from understanding the big-picture concept.

Dan and I continue to do what we can to understand how Elijah operates. I hope we will always be the best advocates for him in school and in social situations and eventually when he has to live life on his own (gulp). I have had moments this summer where I have literally wanted to put him in a giant structured bubble of total predictability and safety. In my gut I know that ultimately this is not good for him. Yes, it is good to provide as much structure and support as we can but pushing his limits will be good for him in the long run, as it will teach him to be flexible.

I really just needed to vent a bit tonight, so thanks for listening! :) Tomorrow (another big gulp) I will be 39 years old. Why is this so hard for me to swallow? I feel like middle-age is about to swallow ME. Have a great rest of your week!

Monday, July 21, 2014

Sleep-anxiety, Inc.

My tired little boys are in bed after a looong weekend spent at the dropzone. We had a great weekend and even got visits from a few different friends. One group of friends was able to go skydiving (they had so much fun!) and some others were not able to go (the plane needed unexpected maintenance...booo). We also got to spend some time with our good skydiving friends who we haven't seen in a while who were visiting from Florida!

I wish I could report that our weekend was filled with stellar behavior. It was not. It was pretty rough at times. Thankfully Dan was in the vicinity to help with discipline and behavior management. That helped a ton. For the past five nights or so Elijah has reverted to not sleeping well again. He wakes up exhausted and is up constantly throughout the night. A few nights ago the fitbit recorded 42 times awakened in a 9-hour period! Yikes! I have done a TON of thinking about this and so many other aspects of our oldest cutie.

FYI! The rest of this post could be really boring, so I will not be offended if you click away now. It helps me so much to write these details out, so bear with me if you wish to continue reading! :)

I have said so many times over the past year or so that once we get Elijah's sleeping figured out, so many other things will fall into place. I'm beginning to understand that it's not that simple. We have done everything under the sun to get that boy sleeping well and nothing has worked for him on a consistent basis. Here are the things I feel like we DO do well (not sure these things help, but they definitely can't hurt):

- We have a very strict bedtime routine that we stick to every single night, even when we are away from home.

- We keep the boys' bedroom (at home and at the dropzone) TOTALLY pitch black.

- We have two sources of white noise in their room to drown out all outside noise.

- We bought Elijah a weighted blanket (20 lbs!) that I've read helps to calm people with sensory/sleep issues.

- We consistently put him to bed early since he tends to wake up so early in the mornings, no matter what time he goes to bed.

- We make bedtime a totally relaxing, predictable and enjoyable routine for our boys.

From what I have read about both ASD and NLD, most kids with both of these diagnoses have sleep issues due to the sensory and anxiety issues also involved. That tells me that we need to address the anxiety and sensory issues first, and only after we do that will the sleeping improve. We have tried many months' worth of sleep meds that have not worked and that have actually caused more strife than help! I'm not eager to put anything else in his body at this point. He is super sensitive to medication and that has always been the case. Even antibiotics and Tylenol affect him negatively.

So how do we help him with anxiety and sensory issues?

- Routine helps a lot, I think. Summers are NOT good for routines, but we can continue to do things consistently as a family no matter where we are (dropzone, home or otherwise).

- Elijah has so much anxiety surrounding the topic of potty training, so we have to do our part to minimize this. I was reading tonight in an NLD book that kids with this disorder so often have a difficult time prioritizing bodily/emotional needs. It is tough for them to order hunger, tiredness, the need to use bathroom, pain, etc, in their hierarchy of needs. This makes a lot of sense to me. Dan and I have instinctively started having tons more patience with accidents because we are beginning to understand that he isn't trying to make us upset/crazy/mad/ready to run screaming from our home. It can be soooo frustrating and I feel like it would be nearly impossible to be totally calm during the multiple daily issues we encounter. I have really tried to be as cool as possible regarding this topic and I hope we can be semi-consistent with this and reduce anxiety about potty for ALL of us. He IS slowly making progress and I literally need to remind myself about those baby steps once an hour!

- He has some other anxiety triggers that I've been trying to avoid or really help him out with. Getting the tape residue on his arm off from his surgery? Not important (this is a HUGE source of anxiety for him). It'll come off eventually. Watching him suffer through social scenarios? When I'm present, I coach him as much as possible to help ease his pain. Hopefully over time he will begin to hear my voice in his head and find comfort in that. "Elijah, it's ok! He's just a kid! Say 'hello!' Ask him if he wants to play!" I've also tried to be more sensitive to some of his unrealistic worries (OCD-type stuff). Tonight he was really concerned and obsessed about a tiny little pimple he has on his arm. He did not want me to touch it, but he was crying at bedtime because he wanted it to go away. I prayed for his pimple, kissed it and did everything I could think of to give him peace about it (as opposed to making him feel silly about being worried about it).

- Dan and I have learned through reading about NLD that busy environments are really overwhelming for Elijah. It is difficult for him to interpret a lot of visual information on top of tons of noise and other stimuli. For the past few months, every time he is in an overwhelming setting he breaks down. This is usually evident by the hitting, kicking, name-calling, screaming, etc. It can get reeeeeeally really ugly. I've found that when we are in unpredictable or overwhelming environments, I constantly walk on eggshells. Things can make a bad turn very quickly and it can be really challenging to manage, especially if Dan isn't around. I have been trying to get Elijah to recognize the overwhelmed "too much" feeling before it gets out of control. He isn't quite able to do this yet, but I'll continue to point the precursors out to him. Lately I have been providing him with chill-out options when I spy the overwhelmed behavior taking shape. I will let him spend time on the iPad (learning apps only) or a book or a huge mama snuggle (thankfully, he still LOVES this one). Good things have come from this! There is a country-states app on our iPad that he loves. He will sit for hours, learning facts about countries and U.S. states. He can point to the exact location of every single African country on a map! Seriously! He knows WAY more than I do about geography and he has such a hunger to learn it all. I feel like these sorts of solutions are positive outlets for him, so we will continue to seek out other helpful coping strategies.

- I've read a little bit about the Tomatis Method (listening program therapy) and the Alert Program (this deals with self-awareness, which is such a deficiency for Elijah) and I am SO excited to explore both avenues with Elijah, hopefully with the help of his OT.

Whew! I think that's all for now. My brain hurts. It took major effort to get all of that out in a semi-organized manner. If you are still reading, I'll send you a medal for your patience. Thanks for reading and caring and we love you for being here! Have a great week!

Thursday, July 17, 2014

Challenges and some sadness.

I got a bad report from our daycare provider regarding Elijah's behavior while the boys were at her house today. I am so sad and upset about it, but mostly I am sad that there are going to be so many times in Elijah's life when people are not going to understand him or have the patience or time to understand how he perceives the world. I know what he needs better than anyone else, and lately I feel like I literally cannot leave him with ANYONE for extended periods of time without all parties suffering...only because the situation is so complex (NOT because he is a bad kid). He is a truly good person who happens to have incredible challenges to face every day. Challenges that most of the rest of us will never know.

I feel so sad tonight. I had very little patience with the boys and I found myself getting upset about everything. Then Sammy insisted on putting himself to bed, which broke my heart. He read himself a story, said prayers and sang songs all by himself. :( Ouch.

I am always so amazed by and thankful for the way that we are refreshed with each new day. I am excited to see my boys in the morning with fresh eyes (and vice versa). I love them and I hope they ALWAYS know that truth!

To make up for the downer post, I'll give you a few more "funnies" we heard Sammy say today. At separate times when he got upset with Dan or me, he said:
"Whiney kids go to ZOOS!"
"Screaming is NICE!"

Oye. Bring on the sass! :) Praying for winds of change for the weekend...and for a great weekend for you, as well!

Wednesday, July 16, 2014

Musings from a foggy brain

I'm not sure what has happened to my brain lately. I feel like I'm Dori from Finding Nemo or like maybe the brain-eating amoeba that has been in the news lately somehow found its way up my nasal cavity. This latest surgery has left me in a fog! It is nearly impossible for me to remember anything or plan further than a few hours in advance unless I write every single thing down. I completely forgot about Elijah's appointment with his developmental pediatrician yesterday (something I normally would NEVER do) and I have had to continually remind myself of other plans in order to not forget them. I hope this lifts soon, as it is very annoying!

I received a very unexpected treat today! Dan and his mom went in together and got me an early birthday gift: an afternoon at the spa! It was honestly incredible. I got the most wonderful massage, followed by an even better facial. After that was a manicure and a "blow-out" for my hair. I felt so special! I think every mama should get that treat once a year.

Here are a few boy funnies I've been collecting lately:

SAMMY WORDS
construction = instruction
four-wheeler = more-wheeler (love this one)
because = pecause
puddle = peddle
water = gua-gua (he's trying to say "agua" and it's so adorably cute)
Whenever Sammy is upset with Dan or me,  he yells at us, "You're BORING!" :)

NEW ELIJAH PHRASE
Last weekend we had been sitting in the hot sun at the dropzone for a while, so Elijah announced to everyone, "I'll be back. I'm going to 'shade-up' in the hangar." We all loved it!

We have noticed a slight E potty improvement in the past few weeks. He will actually occasionally stop what he is doing to go use the bathroom with no prompting. We haven't seen him do this in sooo long, so it is a small baby step toward being potty trained. On the hearing note, I've been noticing that he is hearing differently. I'm assuming it means it's better overall, but we still have a few weeks before we'll know this for sure. Yesterday in the car he heard a clicking noise in a song that he has listened to a thousand times before and never heard. I hear him say, "What?" a lot more than before surgery, but I wonder if that's because he's hearing more/different sounds?!

Elijah's little friend from first grade stopped by to play tonight for the first time in a REALLY long time. He was sooo happy to see her. One of our very good skydiving friends also stopped by to pick up some baby stuff since she and her hubby are expecting and we are done expecting. It was sad for me! I was genuinely upset about saying good-bye to those things, and also about the idea of being done. :( I'm working through that. The boys get a day at daycare with their friends tomorrow while I edit photos and Dan jumps out of airplanes. The weekend will bring more dropzone time and we even have some friends who will hopefully be able to make their first skydives! I love being able to watch people experience the sky! It is one of my favorite things.

Have a great evening! Next time hopefully my head will be clearer and more organized. :)

Monday, July 14, 2014

Knees in the breeze

The boys and I spent two nights at the dropzone with our daddy/hubby this weekend and it was sooooo good for all of us. The boys loved their time there, as always. Elijah slept GREAT, which was wonderful (Sammy, too, of course). The boys were able to play with friends and run around the perimeter of the hangar approximately 8,000 times. We spent quality time with our amazing friends and that was a big highlight. We adore our skydiving family to pieces!

On Sunday night, after the boys were asleep and the tandems were finished for the day, Dan asked me for the 1,000th time if I would do a tandem jump with him. I have said "NO!" 999 times before. I have made hundreds of jumps on my own, so it has been really hard to imagine giving up that control and freedom. I had a weak moment, or maybe you could call it a moment of strength. I knew I needed to get in the sky and I didn't have time for a re-train. To make things better, the sunset was gorgeous! I think you can tell from the pics that I made the right decision. :)











Now I'm motivated to get my gear in working order and to get in the sky much more often! Dan is home for the next couple days, so we will have some family time together. An incredible friend of ours has offered to come over and watch the boys tomorrow or Wednesday so Dan and I can get away for some alone time. We have more dropzone time coming up this weekend (maybe three nights this time?) and I feel so happy about having the month of July "off." Elijah's ear is healing well and he has been in MUCH better spirits than in previous weeks. Life is good! Thanks for peeking in!

Friday, July 11, 2014

Snuggleday

Elijah had another awesome day! His gauze fell off during the night last night (we were instructed to let it happen on its own) and his incision looks great. He experienced minimal pain today and was in great spirits. He looks better and way less tired to me than he has in months. I'm so happy the "sleep" meds are out of his body.


Dan is in full-on skydiving mode, which means the boys and I are spending a lot of time together and will continue to do so for the next 6 to 8 weeks. The past two days have been strange. I didn't feel like today was Friday...or Saturday, Sunday, Monday, Tuesday, Wednesday or Thursday, for that matter. I literally did not leave the boys' sides even for a second today. We did HOURS of snuggling and even more hours of playing. I refuse to forget about the blessings! I'm feeling super grateful and overwhelmed and I am doing the usual post-surgery sorting-through of feelings, events and answered prayers.

If all continues to go well, the boys and I will head to the dropzone tomorrow. We are all looking forward to it. Have a great weekend! Thanks for stopping by.

Wednesday, July 9, 2014

Thankful.

Today was a pretty incredible day, and I found myself constantly feeling thankful. We did not know what to expect coming into this surgery. We would rather forget about the last ear surgery, and we didn't know if all or any of that chaos would happen again. We are SO THANKFUL that this was a completely different experience.

(My dad and stepmom have gotten a couple Piggie-Elephant books for the boys and they LOVE them! Elijah insisted on bringing both books with him to the hospital yesterday. He literally snuggled with them before and after surgery....arms wrapped around them while he drifted in and out of sleep. :) Today he wanted to pose for a picture with one of them.)


Elijah had a great day! He woke up feeling good, eating and drinking A LOT and keeping it all down. He played almost at his usual pace, and in true fashion was sassy when interacting with his brother. He complained of mild pain twice, but we began a tylenol-advil schedule that seems to have taken care of any discomfort. We changed his gauze once today and his ear/incision look great! No fever, no dizziness, lots of crazy hair and a big happy smile on our spunky and resilient oldest boy!

I could tell Sammy was happy to be with his family today (the feelings were very mutual). I got lots of hugs and snuggles. After I had put him down for a nap, he called me into his room. "Mommy! You forgot to give me LOVE!" He wrapped himself around my arm and would not let go. "I love you SO MUCH, Mommy. You are the best mommy EVER. I love all of our family." I love that little boy! He is so funny and cute and independent and awesome.

I feel like it would be so easy to forget about the blessings (MIRACLES) that have been thrown our way. Once things are "okay," it is easy to settle back into a routine and forget about answered prayers. Today, I haven't allowed myself to forget. I keep reminding myself to be extra thankful. I keep thinking about where we were at on Day #2 last time and how Elijah couldn't walk in a straight line for many weeks after that surgery. I keep reminding myself about what the doctor told us yesterday. He said that if another surgeon were to do this surgery not knowing E's history, he/she would probably have no idea that his footplate was at one point totally broken in half. Yesterday it appeared to be totally healthy and filled with fluid, which is a miracle based on the reactions we've seen from the doctors and nurses (apparently cracked footplates don't "just heal"). I keep thinking about how many times Elijah has had to endure tape being painfully peeled off his arm and needles poked into him and on and on. And yet he continues to smile. When I think about all of this, his anxieties and struggles make so much sense. I want to never forget any of this and to keep it all in perspective! Please remind me of this when I am struggling to understand something or another! :)

Yesterday Elijah asked questions and made comments that we have never heard before. Here are the ones I can recall:
"Am I going to die?"
"I'm scared."
"I don't want to be alone."
"Will you and Daddy be with me the whole time?"
"After I go to sleep with the mask, will they put the tube in my throat?"
"Will you and Daddy wait in a different room while I have surgery?"
"I miss Sammy! I want to be with him!"
"Why does my throat feel funny after surgery?"
"Will you be there when I wake up?"
"When Daddy comes into the surgery room with me, is he a nurse?"

For the first time ever, he was thinking ahead and also expressing feelings surrounding surgery and time in the hospital. He has not ever done this before, not even a little bit. I never want my boys to worry, but this is definitely a sign that Elijah is maturing! I wonder if he has just been unable to make sense of these things in the past and is finally able to express the words/feelings verbally. It makes me a little sad to think that he has perhaps been holding all of these questions/thoughts in because he has been trying to make sense of them. At any rate, I was happy to hear him rattling off questions and I am MORE than happy to provide answers!

If my surgery equation is correct (one week of healing is needed for every day spent in the hospital), we should have another 6 days before we are back on track! We do not have much planned in the next few weeks and I did that on purpose. Hopefully there will be lots of time relaxing at the dropzone and time spent together and with friends and family. After a few months of TONS of activity, I'm looking forward to a laid back July!

Thanks for checking in! Wishing you all a wonderful week!