Tuesday, September 30, 2014

Opposite of "not new" is...

I began work in Cannon Falls (for the Fall) on Friday. Since then I have worked down there three days and shot a wedding, so I know I must look tired. That was confirmed when I got home tonight. Sammy looked me square in the eyes and said, "By the way, Mom, you do NOT look new." Ouch! At least he is honest!

I don't have much to report regarding Elijah and school. We continue to send him to school, sending him deeper into tiredness and knowing it's not necessarily what is best for him right now. His teachers have been quiet, so I assume that means things are going better for the most part. Or they are sick of my emails.

We are waiting patiently for Dr. M (doctor) and Dr. F (sp ed case mgr) to speak, but I haven't heard a peep about that. Dan was able to accompany Elijah's class on a field trip today and for the ten minutes that he observed E in class he said it was obvious that he required a lot of extra attention. I know for a fact that he wouldn't require as much attention if we could cut back his days for a season and give his brain a break.

The field trip went great, Dan said! Elijah's classmates interacted with him and seemed to like him, although Elijah was rarely the one initiating interaction. I was glad Dan was able to go along. We try to always make that happen.

That's about all for now! Please say a prayer that we will be UNDERSTOOD soon. Very soon. And very understood.

Friday, September 26, 2014

Going to bat

This post comes to you from one tired mama. I could fuel a skydiving plane, at least for a few loads, with the energy I have put into THINKING...and not sleeping...this week. It's been totally worth it, though! We are making progress!

Although Elijah's case manager and teacher are doing so much for him at school (they really have put TONS of effort, thought and love into our boy already this year!), I still don't feel like they truly understand the weight of the situation. I don't mean to sound ungrateful or negative at all because I am sincerely so happy about the team that is caring for him. It'll take some time. Eventually they will understand that while all the tactics and tricks are great and may be helpful short-term, we need to get to the root of the problem: Elijah's brain cannot handle full days at school. Or...it CAN (with the help of the tactics and tricks) but then he has NO reserves. He uses every bit of his energy to survive the school day. We are unable to ever do anything past 6:00 in the evening because if he's not in bed by 6:30, his sleep suffers and things escalate. Weekends have to remain super low-key. Not to mention the impact this is having on our family! Dan and I are stressed and tired. Elijah is having a difficult time controlling his emotions, which sets a bad example for Sammy (who is now mimicking his brother's outbursts).

I have been honest with his teachers. I have told them what he needs and what is going to transpire (ugly behavior turns super ugly turns super-duper ugly) if we continue to patch the symptoms. They have asked for more time to try other things, but ultimately Dan and I know that the kid just needs less on his plate.

I called Dr. M today, Elijah's neuropsychologist. I wanted to run the situation by him. He heard me and he agreed. The things that are being done at school are GREAT! But these "solutions" are band-aids. We need to get to the root of the issue if we truly want what is best for Elijah. I mentioned the partial-day idea and he suggested first trying a few hours of in-school downtime at the end of every day. I'm learning that educators and medical professionals want to do EVERYTHING POSSIBLE to keep children in the school building! I totally get that for the majority of children, but for a kid who has soooo many strikes against him and has endured sooooo many struggles and is sooooo depleted/exhausted/miserable, etc etc etc?!

Dr. M offered to chat on the phone with Elijah's case manager. He is going to suggest the in-school free time and if that's not an option he'll stand behind us on doing partial days. I am so happy about this! Dan and I are hoping Elijah's team at school will see the need for this and understand our genuine intentions and still trust us. The bottom line is that Elijah has endured so much in his life and we refuse to see him suffer any more when we know there is a viable solution! If there is a way to make things easier for him, we are going to fight for it. We KNOW what he needs right now (or at least what a good first step is) and we pray that his educators will trust us.

And for those of you who have left sweet comments and sent emails about home-schooling...thank you so much for your thoughts! I don't foresee things getting out of control, but if they do we may explore another avenue short-term. We want Elijah in school for a couple of reasons. He needs to be "pushed" socially...and daily (not too much, obviously). Also, I believe that school (as much as his brain can handle) is strengthening his endurance and will help him out so much in the long run. I don't feel like home-schooling would push him enough, but full days at school push him too far at this point in his life. We need to find a middle ground and we are HOPING that can happen in a school setting and we will do everything we can to make that work.

Thanks for reading and for all of your support and suggestions. We cherish every note, thought and prayer! THANK YOU THANK YOU!

Wednesday, September 24, 2014

Heavy heart

I have a heavy mama heart. :( I'm sad. I'm sad that the world is such an overwhelming place for Elijah. He had a rough day at school today. It was rough at home, too. He looked totally and completely exhausted tonight. He could not control himself and did a lot of screaming and talking back. He is struggling. After talking to his teacher on the phone, I laid in my bed for a bit and thought about what to do. What I know needs to be done is not what the school wants. So what do we do? Do we do what is best for Elijah or do we follow the rules?

What is best for Elijah: He needs a solid week off of school to get back to baseline. When he returns to school, his days need to be shortened.

The rules: Put band-aids on the situation for four weeks and re-evaluate a COMPLETELY exhausted and overwhelmed boy.

I don't blame anyone and I'm not upset with the school. I get their point of view and I appreciate that they want Elijah to be in school as much as possible. His team truly does want to understand and help and I think it's just a matter of getting them to believe that Dan and I know what needs to be done.

I'm feeling a bit helpless and confused tonight. I'm considering pulling him out of school until he feels better, but then would the school not trust us?

To be continued!

Tuesday, September 23, 2014

Refined thoughts

At some point when Elijah was in my belly or shortly after he entered this crazy world (probably due to his heart condition), a lack of proper bloodflow and/or oxygenation caused the pathways in the right side of his brain to become injured. Because the brain is an amazing organ and because our bodies have an incredible way of finding other avenues to make things happen when circumstances aren't ideal, alternate routes were created in his brain. Imagine a detour. You follow those annoying orange construction signs around twisty roads that are way out of your way. The process requires extra patience, energy and time. When you are back on path, you are flustered, tired and you want to scream at everyone around you.

Instinctively we have always known that Elijah does not process the world like the rest of us do. We have always put him to bed early, knowing his brain has needed extra rest. We have always tried to minimize overly-stimulating situations whenever possible because his eyes begin to glaze over and he appears totally exhausted. When we received his Nonverbal Learning Disorder diagnosis, all of the above was confirmed. We know that Elijah reaches his "limit" MUCH sooner than the rest of us do.

You know that point you get to occasionally when you have pushed yourself too far? You start bumping into walls, you want to yell at the people you love and you cry about the littlest thing? That is your LIMIT. Once you get there, you know you've pushed yourself beyond your means. You need to back down and get some sleep. Not work as hard. Relax for a few days. Take it easy. But for most of us, it takes MONTHS of pushing our limits to get to this point. For Elijah, it takes way less than that.

Elijah has reached his limit this school year already and we are becoming concerned. Full days are too much for his brain to handle at this point in his little life. In the past week he has been throwing objects in class, yelling at his teacher and being inappropriate with his peers. He has reached his limit and he is doing those things all of us do when we have reached our boiling point.

In the past year we have tried to address many different issues, assuming they were main contributing factors to Elijah's struggles. We have focused on sleep and anxiety mainly, assuming one of those might be the main contributor. After many doctor's visits and way too many tears, we now know that over-stimulation is the culprit of Elijah's struggles. When too much is expected of him and he has to process large amounts of information for extended periods of time, he reaches his boiling point. At that point he can no longer control emotions or his behavior and he wants to make everyone around him mad. I don't blame him. I know that feeling and it's awful!

Dan and I met with the key members of Elijah's school team this afternoon. They are AWESOME. They love and care about him and they genuinely want him to succeed. We suggested that we cut Elijah's school days back a couple days/week, but they offered other solutions. We expected this. They are willing to make adjustments in Elijah's schedule to help him get through the school day in hopes that he will not become completely overwhelmed.

For a four-week trial period, Elijah will receive multiple "breaks" throughout every day. He can go to a safe place and have free time. There will be no expectations. He can rest, have a snack, read or play. Dan and I are willing to try this, but we know that ultimately Elijah is going to need to spend less time at school. We'll jump through the hoops in order to keep him in school, but we know what is best for our boy. We will see how the next few weeks go! Maybe another miracle will happen?!

THANK YOU for peeking in!

Friday, September 19, 2014

Too much.

We are still processing the awesome, amazing, miraculous news we received this week. I still just can't believe it! In the midst of that we have been dealing with some struggles. Some of the same things we saw in Elijah during last year's rough stretches are slowly popping back up. Beginning on Monday of this week I noticed the checked-out exhausted look return to his face. I've noticed the up-and-down eye fluttering a few times this week and I haven't seen that since his really rough stretch last winter. He has been waking up between 3:00 and 4:00am for the day again. That hasn't happened since last school year either. He has been much more defiant and rigid this week, as well.

Tuesday and Wednesday were rough days at school for him. He was screaming at his teacher and not being kind to classmates. I had a chat with his teacher who presented all of this to me in such a kind, positive and concerned manner. That night I laid in bed for hours pondering everything. It was worth the missed sleep because I feel like I figured out a MAJOR thing!

Full days at school are simply too much for Elijah to handle right now. We all know how rough last fall was for him. During the stretch of time after his ear surgery when he was going to school for 1/2 and 3/4 days he had NO issues at school. Then in May when he was back full-time again, he started struggling again. The day after school was done we left for our big road trip and that was rough. I piled a two-week-long vacation (way too much) on top of a month of full-time school (too much).

He did really great overall this summer once we were home and settled back in. The first two weeks of school were good. And now, on week three, things are slowly beginning to unravel. This is about when it started to happen last year.

I want to cut back Elijah's school days at least a few days a week. I KNOW this is what we need to do right now. We have tried everything under the sun to help him. We've focused on sleep, anxiety, diet, specific behaviors, etc. History shows that the only thing that has helped is not giving him TOO MUCH. What a great silver lining from a really difficult surgery and recovery! I never would have figured this out without that period of time when he was going to school for shortened days.

Elijah's awesome team at school has arranged a meeting to discuss these recent thoughts. We'll do that on Tuesday of next week. I have no idea how this will be received and what will need to happen to get what is best for Elijah. I am praying that there will be a way to shorten his school days and that his team will support us.

I feel so bad for Elijah. I feel terrible for giving him way more than he can handle and expecting him to behave appropriately on top of that. Poor guy.

Thanks for peeking in and we would greatly appreciate prayers that we can get Elijah what he needs to have a fun and successful second grade year!

Wednesday, September 17, 2014

The left ear miracle

I'm typing through happy tears right now. We just got back from Elijah's ENT visit. His hearing test showed very mild hearing loss at low frequencies and NORMAL HEARING for the other frequencies in his left ear. Dr. L's mind was blown. He kept repeating how incredible, fantastic and mind-blowing this outcome is. He said that he NEVER thought things would turn out this way. Back in January Elijah's footplate in his left ear was cracked in half and dried up. Dr. L told us to expect complete deafness in that ear for life. This is such a major answer to prayer!

Dan has been saying it all along. Even on that sad day back in January he told me that he knew his hearing would come back. He was right! I am so incredibly thankful and happy about this news. Elijah has enough things that make life challenging for him. I am so relieved that this won't add to his struggles. Thank you thank you thank you, God!

Apparently Elijah should never take up scuba diving or deep-water swimming, so hopefully he doesn't develop an intense desire to try that. We will do another hearing test in January to make sure everything is still looking good!

In other news, I started noticing a few days ago that E has been looking extra tired. He was struggling here at home and I saw some behaviors pop back up that I hadn't seen in a while. He had a tough day at school yesterday and needed a bit of extra attention from his teacher. We'll move his bedtime up a bit for the next few days and hopefully that will help him feel more rested.

We LOVE his teacher. Instead of seeing Elijah as a behavior problem and sending him out of the room, she does her best to help him work through whatever is going on. She told me that she didn't want to make a big deal out of the things that happened yesterday because she knows he's just tired. Wow! There's another answer to prayer!

I have a bunch of cute Sammy-isms that I've been wanting to share, so I'll do that soon!

Thursday, September 11, 2014

Yay for an awesome second grade team!

The boys have both been working toward earning a particular Lego Movie lego set for the past month or so. Yesterday they both had their respective charts completely checked off (Sammy's was to control sass/talking back and Elijah's was potty-related), so guess what we got today! I brought the boys to the store after school to pick it out and I honestly have NEVER seen them so happy and excited. Wow! They sure were excited about getting Lord Business' Evil Lair! :) Dan and I spent a good chunk of our evening putting it together and we aren't quite finished. Sammy and I will finish the rest tomorrow.

The meeting with Elijah's team went great yesterday morning! He has an entirely new team (minus his deaf and hard of hearing teacher) and I think this is a really good thing. We love his teacher and his new case manager. They are super positive and proactive. He even has a new DAPE teacher (developmental adapted physical education) and he seems awesome, too. He was an EBD teacher for many years and seemed excited about helping Elijah feel like he belongs in PE class. This is huge! Our boy has some great advocates this year and we feel very grateful!

Elijah has been talking more about friends this year, which is great. He loves his new friend John, who he has "meetings" with in Mr. F's office. The other day his class must have been practicing writing compliment notes because he had a few notes in his folder from girls in his class. One said, "Eligah: You make me smile and laugh." Awww. His teacher mentioned that she has been giving Elijah big hugs when she feels he needs them and I LOVE this and encouraged her to keep doing that. Elijah even mentioned it to me the other day: "Mom, Mrs. G gave me a big hug today and it made me feel reeeeeaallly good."

The plan is for some of his care team to observe him in various settings and for various purposes. Very little evaluating will need to be done (if any) since he has had so much done in the past 6 months. In about a month we will schedule another meeting to discuss possibly switching his label to Autism Spectrum Disorder instead of Deaf and Hard of Hearing. We feel like the ASD label would suit him much better, especially since he seems to be hearing so much better since surgery (official hearing test is next week).

We only had 30 minutes in the meeting and I feel like we could spend 2 hours discussing Elijah. Dan and I spoke quickly and I feel like we got the main points across that we wanted to. It was good to be able to fill in the gaps a bit since most of the teachers have just met him. We feel really positive about his team and the year ahead! Yay!

My thumb is feeling better after spending a few hours in the ER yesterday. A band-aid got stuck to my wound, so I spent hours yesterday trying to get it off. I couldn't handle the pain and crying any longer, so I had a nice doctor rip it off (OUCH) and clean it out for me. I am shooting a wedding tomorrow, so please pray that goes ok! Thanks for peeking in. I'll try to get a photo of the Evil Lair posted tomorrow. :) I know you'll just be dying to see it.

If you happen to want to win your very own apple peeler/corer, hop over to my food blog!

Tuesday, September 9, 2014

Elijah's updated resume, impending IEP meeting and an injured thumb.

We have Elijah's IEP meeting bright and early in the morning, so I updated his resume! :)

We will let you know how the meeting goes! We expect good things. Elijah has had a good couple of days at school. Dan and I have been making an effort not to focus on behavior AT ALL. Instead of asking "Did you have a good day?" (like every day last year; real meaning of that question in his eyes: "Were you good today?") we say, "Did you have a fun day? What did you enjoy?" Last year we looked in his folder immediately to see notes from the teacher. This year we are not doing that.

We had an interesting afternoon in the Porta house! I have a HUGE bag of fresh apples, so I've been trying to cook and bake tons of apple recipes. This afternoon was Apple Pie Bread (soooo good!). In the process of peeling the apples, I cut my thumb. BAD. Blood was dripping all over the kitchen floor and I was moaning and sobbing from the pain. Thankfully Dan was home to help! Sammy was seriously upset about the ordeal. I'm pretty sure he thought I was dying. It was actually really sweet how concerned he was about me. He said the following lines repeatedly: "I need my nice mommy back! Mommy, please don't die! Ohhh, Mommy, please be ok again! I love you, my nice, sweet mommy!" 

I refuse to look at the wound. I've handed that task over to Dan. He is bandaging me as needed. And I've purchased an apple corer/peeler that should arrive later in the week.

More tomorrow! Please say an IEP prayer! :) Thanks for peeking in.

Friday, September 5, 2014

Week one of second grade done-zo.

Week one of second grade is done! We are feeling really good about the week and the year ahead. On Thursday afternoon I got a call from E's teacher. I saw the school's number pop up on my phone and my heart started racing. I knew the number well from last year. She was awesome and so so very kind. Elijah had reached a point of being overwhelmed and there was a minor incident with a classmate. She did the PERFECT thing. She calmly told him she was going to call me and did so immediately. From that point, he was able to turn things around and he was fine for the rest of the day. I was able to give her a few pointers so she could better understand how to deal with the situation. If this incident had occurred last year an entirely different scenario would have transpired afterward. We are feeling very grateful.

Elijah's new special education case manager, although we haven't officially met him yet, is AWESOME. In the four days Elijah has been in school, Mr. F has initiated a few one-on-one social situations for Elijah that have already been a success! Elijah and a friend from another class have been meeting for monitored play time together. Mr. F said that the boys formed a quick friendship and (when encouraged) found that they had a lot in common. Elijah has been talking about his new friend John and seems excited about the friendship. We SO appreciate this proactive approach! Elijah gets to spend time with Mr. F daily (away from class), which is great!

So far Elijah has told us:
- He really really REALLY wants to play the drums in music (so much that he started banging away on them, against the music teacher's wishes).
- "Mommy? I think my teacher this year might be better than my teacher last year."
- His favorite part of school so far is reading. :)
- Going to the bathroom after lunch (we told his teacher he NEEDS to do this) is annoying.
- His teacher has taught him to do stretches when he needs a break. I LOVE this!

Dan and I were very impressed with how well Elijah has held things together this week. He was a very tired boy tonight, so we put him to bed a little bit extra early. We feel so good about the people who will be caring for him while he is at school this year. Grateful grateful grateful!

I have been relishing my time with Sammy! I can't believe he will be in school full-time next year. :( We've had a few fun excursions this week and we will make the most of our time together this school year. I love my sweet, snuggly Sammy sooo much!

Weather permitting, Dan will be working all weekend. The boys and I may head to the dropzone tomorrow for some down time before another week of school begins. Have a great weekend and thanks for peeking in on our family!

Tuesday, September 2, 2014

Second grade, here we come (and some funnies, too)!

How is it possible that Elijah is in second grade?! That seems so hard to believe. After we got him on the bus this morning, I found myself thinking back on his precious little life up till now. I remember being in the NICU with him when he was a few days old and having a nurse tell us that these kids (heart kids) are special. They are unique and awesome and they stand out. Seven and a half years later...YEP! That describes our awesome oldest boy! I was filling out a paper from E's teacher and she asked us to describe him in three words. Ha! Three words?! I said, "Elijah, describe yourself in three words." Without skipping a beat, he said, "Smart, awesome and cute!" :)

Dan and I met with E's teacher, Mrs. G, last week. She was SO kind and comforting and we both got a really good feeling about her. We are grateful. I know we will likely have struggles on some level this year, but I have a feeling it'll be a much different story than last year. Elijah has matured and we have learned so much about how he thinks and operates.

This morning before school, as I was combing and re-combing Elijah's hair so it would stay down, he said to me, "Awww. I'm going to miss my brother today." Just before E got onto the bus, Sammy hugged him violently and said, "I'm going to MISS you, my cute, sweet BUDDY!" These boys love each other sooo much. When E's bus rolled up to our house this afternoon, Sammy RAN to it, screaming, "MY BUDDYYYYYY!!!!!"

And on a Sammy note...oh my goodness, he is so funny and precious! I have a few boy (mostly Sam) funnies to share from recently..

Me: I love you, Sammy.
Sammy: I love your body but I do NOT love your head.
(pretty sure the translation for this is: Please stop talking, Mother!)

Sammy: Daddy, I love you.
Dan: I love you, too, Sammy. I love our whole family.
S: Hands down, we have the best family EVER.

He has been so smart lately with the way he responds to being upset with us. Instead of punching or kicking (thank goodness this reaction seems to be fading), he will throw out the words instead. Here are a few examples:

I'm going to catch Daddy in a giant net.
I'm going to catch Daddy in a giant tornado.
I'm going to explode Mommy.
I'm going to pop Mommy's head off.
I'm going to run away from you.
I'm never going to be in your family again.
I'm going to lock my door forever.
I'm never getting out of this car again.
I don't love you.

Elijah (upon seeing Dan walk by with his hair pulled back in a ponytail): What the heck?! Why is there a ponytail on the back of Daddy's head?
Sammy: Is Daddy MOMMY?!

I don't think I ever wrote about this one, but it definitely needs to be told! While we were in Iowa for our family reunion last month, I brought Sammy downstairs to the bedroom for a time-out. I told him to stay there until he was ready to be kind and use kind words. As I left the room, I heard the door lock behind me. "Sammy, open the door, please!" "NO." "Open the door NOW." ....long pause....then Sammy said from the other side of the locked door, "RUDE WOMAN IN THE AREA!" I about died laughing. I ran upstairs to tell my family and they laughed, too. Then..back downstairs to get through the door that was being guarded by the Sassy Sam. :)

The boys, especially Elijah, fell asleep QUICKLY tonight. Novel situations and times of transition are particularly scary for him, so please pray with us for a positive school year and a seamless adjustment period. Our family has a CRAZY couple of months ahead of us, so I'm doing my best not to think too much about it. We'll get through it, right?!

Thanks for peeking in! Have a great week.