Pumpkins, Halloween and meetings at school.

Do I say this every week? Working away from home full time makes the time absolutely fly by! This is my fifth week working in Cannon Falls for the fall and I miss my boys so much. The Sammy and Elijah hugs I get upon returning home every evening are the sweetest things about my entire day.

Halloween was fun! We did our annual family pumpkin-carving evening one day last week. The boys were more involved than they have ever been before. 

Here is Dan, intent in his carving. Notice Elijah's tired gaze? This is something we see a lot lately.

Sammy and I carved our pumpkin in no time. Ghosts in the graveyard.

Sammy hiding from a photo, as usual!

The gooey stuff around Frankenstein's carvings is glow-in-the-dark paint.

The one typical NLD characteristic that Elijah definitely does NOT have is limited facial expressions. :)

My silly, adorable Sammy.

The boys scored with candy on Halloween. We took them to a nearby mall for trick-or-treating and then brought them back home to go to a few houses in our neighborhood. They love handing out candy to kids who stop by our house, so we always make sure to leave room for that. When the doorbell rang, they would RUN to the door and hand out candy while shaking (Elijah) out of excitement.

This year Sammy did what I used to do as a kid. He laid his candy in rows and counted it all. He memorized exactly what he had. I know this because I may have stolen candy from his pumpkin after he was asleep and he totally busted me the next day. He blamed it on Elijah..."ELIJAH STOLE MY COLORFUL LICORICE!" I haven't touched his pumpkin since. The kid knows. Don't mess with Sammy's candy.

I got costumes for the boys last summer super cheap, but Sammy insisted on wearing his robot costume for the THIRD year in a row. :) He might still be wearing this when he's 12. He did willingly wear his cute new Toy Story alien costume a few weeks ago at another Halloween party. Could two boys possibly be any cuter?!

Cute blue super-crayon (Elijah added the "scary mask") and robot, trick-or-treating at the mall!

And this is what I walked in on this morning before leaving for work. Genuine early morning brotherly love. These two love each other so much!

Dan and I had another meeting with Elijah's team at school this week. It was a tough one for us. We were informed that Elijah's behavior has been getting progressively worse while at school, which has included frequent physical aggression and name calling. Dan and I were both startled by some of the things we read in the eval report. Since, we have been in closer communication with his teacher so we can appropriately discipline on days when he becomes physical and calls names.

Next week is our official IEP meeting. In this week's meeting, his teacher pushed for getting an aide in the class who would be solely dedicated to Elijah. She told the team that she pretty much has most of her focus on one child throughout the majority of every day....Elijah. :( That obviously stretches her and detracts from her relationships with the other children. Dan and I are on board with this, so we will see what the team thinks next Wednesday.

Still, we do not feel understood. It seems like the majority is placing focus on ASD instead of NLD, which makes sense considering his new special-education label at school is ASD. I kept mentioning Elijah's tank being totally empty and him being above boiling point, but I received a lot of empty stares back.

I called Dr. M, E's neuropsych, today and asked if he would be willing to come to school to chat with the team. He said he absolutely would! Music to my ears. I feel like he could word things differently and not be the "protective mother" that people hear in these meetings. I'll attempt to set up a meeting for early December so that can happen.

More later. I'm tired. Dan will be away for the weekend hunting, so the little boys and I have some fun planned (cleaning! baking! sleeping!). Thanks for peeking in. Have a great weekend!

Keep doing what you're doing.

October is done! We accomplished so much last month, work and fun alike. November will be busy, too, but not quite as crazy. Elijah had a really rough day at school on Friday. We've been keeping a detailed journal of every aspect of his days (nutrition, activity, screen time, sleep, etc), so I have been able to look back and see patterns with certain things. He has slept horribly for the past three nights and the only real difference is that he didn't fall asleep until 7:00 or after on those nights. His bedtime routine is lengthy and sometimes we have potty issues that keep him from falling asleep right away. Instinctively I have always known when he needs to be sleeping and when that doesn't happen, I get stressed out! Last night I knew he needed to be asleep by 6:30 and when that didn't happen I knew the night would be bad. His fitbit showed that he was awake for a lot of the night and up for a solid stretch from 1:15 to almost 3:00. That is the third time that has happened in the past week.

Some behaviors have popped up with Elijah recently that are unique. Suddenly when left alone, he acts like a two-year-old and becomes destructive. I've found cupfuls of water poured onto the floor, soap emptied onto the floor/sink, kleenex boxes thrown into the toilet and peed on, hand towels put in the toilet, toilet paper unrolled and strewn around the bathroom, toys have been thrown across the room, and the list goes on. I literally can not leave him in a room alone anymore. I'm hoping these new behaviors are an effect of feeling overwhelmed and out of control and that once his tank is filled up a bit they will lessen.

He has also been super obsessive about certain things lately, especially times. He has to know exactly how many minutes every given event is going to take. If we watch a show or movie, he needs to know the EXACT number of minutes it will take and he keeps a tally along the way. He knows exactly how many minutes every kids' movie in our home takes to watch. There is a CD we listen to in the car that the boys love and he keeps very close track of what number each song is and how long each is, etc. It gets out of control at times, and I never know if I should feed into his need to constantly know such minute details about everything or if I should try to make it seem like it's not a big deal. I know it is control for him, in a world that makes him mostly feel out of control, so there is definitely a fine line.

Elijah did not start his partial days at 100%, so it is going to take a while for progress to show. I hope his team at school understands this and doesn't expect to see an immediate change. Dan and I are committed to doing EVERYTHING in our power to help him get back to baseline. There are a handful of things we can control, such as nutrition and bedtimes. Today I decided to start our bedtime routine at a ridiculously early time so we can be sure to fit everything in and factor in time for potty issues. Dinner: 4:30. Bath: 5:00. Potty time: 5:30. Jammies/brush teeth/books: 5:45. In bed: 6:00. Asleep (hopefully): 6:30.

There was an awesome moment in church this morning at the end of worship when total peace swept through the room. Everyone was silent and we could all feel HIM right next to us. During that time, I felt like I wasn't even breathing. My body and mind were both so still and quiet and totally receptive. I had some distinct thoughts/messages come to me: the main one was GRACE. We need to have major grace with Elijah during this time because his behaviors are out of his control. Next, I heard the words, "Keep doing what you are doing." Then I thought of music and swimming. Once Elijah is closer to baseline, I think both will be very calming and helpful tools for him. I sense that music is going to be a source of peace for him and we all know how calm the water makes him feel.

I owe Halloween pics! Halloween was fun. It totally wiped E out and keeping him up till almost 8:00 had us paying for it the rest of the weekend, but both boys had a blast and looked as cute as ever. My next post will be Halloween photos, I promise! Thanks for checking in.

Improvements

Whew, the week is flying by quickly! We started a few new things with Elijah this week in hopes of helping him to feel less overwhelmed and anxious. The main one is shortened school days, of course. We have also been giving him herbal supplements, we've been getting him into bed even earlier (just for a while, until he's caught up), we are cutting way back on screen time (only allowing 30 minutes/day of iPad/phone/tv) and we have started juicing veggies and fruits for both boys since they are so anti-vegetable. Every day they are each consuming: 2 apples (or more), 1 orange, blueberries/raspberries, 1 kiwi and 2 handfuls of kale. We have also been minimizing sugar intake, which is difficult on Halloween week!

We've been doing all of the above since Monday and we have noticed a definite positive change in E's behavior at home. The shortened school days are probably helping the most, with the other things helping by little bits that all add up. Dan and I have noticed that Elijah still has tired eyes. He looks exhausted constantly (although, he's looked less exhausted with each passing day), but he has mostly been able to control impulses and not be as defiant at home. I asked his teachers for a report at the end of the week, so I'm looking forward to hearing that.

I got a note from the school nurse today. Elijah failed his vision screening at school in his left eye. His vision was 20/70. In April it was 20/40. I'm not sure why it would have gotten worse so quickly, so I scheduled an appointment for him to see his ophthalmologist on Friday morning. Friday is Halloween, so we want him to be able to spend the afternoon at school for his "harvest party," so this works out perfectly!

Dan and I have been working like crazy fiends. We are ships passing in the night, as we head to our jobs. I know this craziness is only for a season, so we are pushing through and managing. Soon we will have tons of quality time together, once five out of eight of our jobs slow down.

I feel like there is always so much more to say, but Dan and I are actually at home together tonight so I must go snuggle with him! Thanks for stopping by! Have a great rest of your week!

October 2014 fun

I'm finally catching up on October photos! A few weekends ago we made it to the corn maze. The boys had fun, as always.

Sammy and his silly faces, always trying to make everyone laugh. Elijah followed suit.

The corn pit was a favorite activity again this year. We took turns burying each other and then the boys ran around. I am STILL, weeks later, finding corn in my washing machine and random places around the house.

Posing by the hay sculpture!

The parakeet tent was a hit. Sammy is such an animal lover and wanted so badly to connect with the birds. Elijah was indifferent, but enjoyed the experience.

My handsome boys in the middle of the corn maze!

Elijah LOVES this hay bale maze. He always has. Sammy was a bit braver than last year, but kept getting upset about Elijah not waiting for him.

Following are some random pics I took at home the other day. The weather has been gorgeous (as is evidenced by Sammy's tank top)!

Today we spent an ENTIRE day together as a family. It was incredible! I even got a two-hour nap, which is unheard of these days. I loved today and I love spending time with my precious boys. After my mega-nap (thanks to my wonderful hubby for making this happen), we headed to a nearby apple orchard. We picked apples, goofed around, drank cider, rode on a tractor and ate some food. Elijah was SPENT by the end of the day, so we put him to bed super-duper early tonight. We are ready for his first week of half days! More to come on that. Thanks for checking in!

Shortened school days

I received a phone call yesterday from Elijah's school to set up a meeting to discuss his shortened days. Wait...what?! The only time everyone could meet was....today! We didn't know who had initiated the meeting or what to expect.

Once we were in the meeting we found out that E's neuropsych and the school's special ed supervisor had finally connected on the phone. He did not suggest shortened days as a first tactic (this did not line up with the most recent conversation he and I had, so Dan and I are kind of confused about this), but he did offer to help Elijah process things at school with less effort even if that means coming to school himself and making specific suggestions. He suggested the team get a specific book to read that is geared toward helping NLD kids in the school setting...and that book was sitting on the table in the meeting today. Dan and I were very grateful they had gone to the lengths of purchasing the book. We could tell right away that his team is working with us and that they truly want not only what is best for Elijah while he's at school, but also what is best for him while he is at home.

The special education supervisor started talking about possibly exploring other options that did not involve shortening E's school days. To be honest, I didn't hear much of the following three minutes because I spent that time fighting back tears. My chin began quivering uncontrollably so I spent all of my energy trying to get that under control. Once I did, a good conversation followed. The team is finally understanding how Elijah's brain works and that he cannot be expected to do much of anything after he has reached his limit. They really seemed to understand that even though an activity might be fun for him (gym, lunch, recess, visuals in the classroom, music, etc), that doesn't mean it is easy for him. Things are starting to click.

We were told that without a doctor backing us, it wouldn't be as easy to make shortened days happen...but that it could still happen. I know the other Dr. M will back us as long as he can chat with the sp-ed supervisor, so to make things less of a hassle I gave her his info (as he told me I could do) and hopefully they'll be able to connect. It was pretty obvious that Dan and I wanted the shortened days and nothing less than that. The team agreed to back us.

Starting next Monday, Elijah will leave school at 1:00 every day until the end of the semester. We will keep a daily journal at home to note how specific things are going (anxiety, sleep, etc) and re-evaluate at the end of our trial period. If things haven't improved by the end of December they won't be able to justify keeping him on shortened days, so we'll return to full days. This doesn't quite make sense to me, but we are GRATEFUL for their willingness to do this trial period for us. Perseverance pays off!

I have had a few people ask why I haven't been meaner. Why I haven't demanded shortened days sooner. I want to say this here...we have no hard feelings and I've never been inclined to be mean or demand anything. It is not in my nature to be mean or demanding and it is in Elijah's best interest that we maintain good relationships with his educators. We happen to truly like his educators! His teacher and special education case manager are both INCREDIBLE teachers and people, as are the rest of his team. We have nothing but positive things to say about them. Our priority is obviously protecting our boys...always...but we feel good about the way we have approached this situation.

We have two more meetings with E's team coming up in the next couple weeks. It feels good to have some things in place going into those. Phew, huge weight off our shoulders tonight! Thanks for peeking in!

"Way too much" kisses

We are alive! (I think.) Dan and the boys had a relaxing couple of days at home during MEA break last week. Elijah has been slooooowly returning to baseline, although, it seems impossible, but....he still isn't there. It takes him so long to recalibrate. We still do not have clearance for partial days, so we'll continue to do our best to help him feel as good as possible. He has doctor's appointments tomorrow and Thursday, so he'll need to leave school early those days. A random medical issue came up last week with E. It's minor, but he'll need to have a procedure in November to help his body work a little bit better. 

Dan worked all weekend, so the boys and I had a few days together. It was nice. Lots of quality time, snuggles, playing, smooching, hugging. Times a thousand. Yesterday Sammy put a kissing ban on me because I was kissing him "way too much." He told me, "You can only have one more kiss today and maybe two tomorrow." I sneaked in WAY more than that.

During the week for the past few weeks I've only gotten to see the boys for maybe an hour/day, so I REFUSE to let them out of my sight on the weekends. I brought them with me on an adventurous photo shoot today. We ended up hiking through the hills of Red Wing to get to our couple. They immediately began harnessing me up to go rock climbing....with my camera. As I was scaling the rock wall (barely), Elijah and Sammy were cheering me on from the ground. "Be careful, Mom!" "You can go higher!" "Don't fall!" Ok, so I didn't actually go very high, but it was quite an adventure taking pictures of a rock-climbing couple while suspended by a rope.

I still owe fun pics and funnies. Soon! Bear with me!

Croup: Season 5, Episode 1 (Samson)...AND a cardiology visit!

Our sweet Sammy was up at 9:00 last night with a barky cough and a teeny tiny fever. He and Dan sat in a steamy bathroom and then outside for a bit. It was fairly mild and improved enough to not consider medicine. Then I let him do the customary sleep-with-mama for a bit afterward. It's been a while since Sammy has slept with me. I'd forgotten that he likes to literally drape himself over my body and then fall asleep. Minimal sleep was occurring for the mama in the bed, so by midnight I put him back in his own bed. He did fine the rest of the night and just had a lingering runny nose and tiny cough today.

In other news, Dan brought Elijah to his 6-month cardiology check-up today. I had a bit of a nervous tummy about it (as always). Six months ago Dr. G had been surprised by how well Elijah's heart was doing, so I thought maybe this would be "the time" when we would hear "stuff" could be in the near future. I was wrong! His heart has mild stenosis (way milder than what he had expected), his valve has a tiny bit of leakage (very minimal) and heart function looks just great! We'll go back in six months! Again he told Dan that five years from surgery is a standard timeframe to expect the next surgery. That would be 2016 for Elijah, but hopefully in his case we will extend that a year or two! It always feels SO GOOD when Elijah is cleared for another six months! This is HUGE sigh of relief! And now we know that Elijah's overwhelmed exhaustion has nothing to do with his heart and everything to do with his brain.

Other than that, we are kind of doing bare minimum these days. On the days when we get Elijah to complete a sheet of homework or when I get a load of laundry folded AND put away I feel super accomplished. Dan and I are both working as much as possible while we can. This time of year provides opportunities for money for both of us, so we try to take advantage of that despite feeling like our family is being stretched in many directions. We have had a few weekend family days together lately, which has been SOOOo nice. But usually when one of us gets home, the other is leaving to go to work. I am definitely not complaining! We are so grateful to have work right now!!

I still haven't heard whether or not Dr. M #1 has connected with school. In the meantime, I've been PRAYING that Dr. M #2 will agree to write a note to shorten E's school days asap. Today I spoke with an advocate from PACER center and while she had a few good pointers for us for when we attend meetings, we are already doing everything she suggested. I'm excited to get E's days shortened because then we can actually work on lessening some of his anxieties. I want to get him swimming and playing a musical instrument. Both of these things I know would be VERY calming for him, but at the present time we cannot fit either into our schedule. Dan and I have something else in the works that we're hoping will pan out and that will help him immensely. I'll wait until we are 100% committed and then share!

Soon I will share photos from our yearly corn maze adventure! This past weekend I took the boys to Pumpkins in the Park, hosted by our city's schools. It was fun! The weather was gorgeous and the boys got candy and pumpkins and a few other treats. Tomorrow E gets to wear pajamas to school (a special class treat!) and then he has the rest of the week off. We have a few other doctor's appointments coming up this week and next, too. I hope this post made sense! I'm tired! Have a good night!

Nurses are the ticket!

We have been waiting waiting waiting for doctors and educators to connect, all the while watching Elijah's exhaustion and resulting behaviors spiral out of control. His tics are back with a vengeance, along with major blurting out, defiance and lack of emotional control. Things are unraveling again. We sent him back to school for the past few days and he did better overall while he was there (thanks to his amazing teachers, who are seriously AWESOME and doing so much to help him), but once he gets home he has NOTHING left.

The doctor we have been waiting on is the one who gave Elijah his NLD (and ASD) diagnosis. This doctor is REALLY smart and really knowledgable specifically in the area of NLD, but I don't necessarily get a super warm/compassionate/empathetic vibe from him. As the week went on I was becoming impatient with his lack of response (and I've bugged him PLENTY), so I knew I had to seek out other options. As I've said many times in the past few weeks, we just cannot go on like this.

On my drive to work this morning, I had a major A-HA moment! I was thinking about how his awesome, caring, wonderful teacher is a woman...and a mother...so why does it seem like she is having a hard time understanding the gravity of this situation? Then I thought of E's neuropsych (the doc we've been waiting on) and how smart he is and how much he knows about Elijah's specific disability...so why does it seem like he is having a hard time understanding the gravity of the situation? OH! Teacher is a mother but NOT a medical professional. Doctor is a medical professional but NOT a mother. THAT'S IT! So then I had the idea that I need to connect with NURSES (who are possibly also mothers). More specifically, nurses who work with Elijah's doctors!

I called E's developmental ped (another Dr. M) and spoke with his nurse and gave her our story. She promised to talk to Dr. M ASAP and get back to me. Then I desperately called Dr. G's (E's cardiologist) nurse, even though we believe his exhaustion is not directly related to his heart. After one minute of talking, she GOT IT. "Oh Megan, this is terrible, and I can totally understand your frustration with school and doctors, too!" She promised to talk to Dr. G and "prep" him, as E has an appointment with him on Monday. I don't know that it's entirely appropriate for Dr. G to write a doctor's note shortening E's school days, but I want to know that he could be a back-up if necessary.

Less than an hour later I received a call back from Dr. M#2's nurse. She relayed what Dr. M had said...we need to eventually address some anxiety issues, but obviously Elijah needs to be able to get through a school day without his brain shutting down. THANK YOU! I answered a few questions that Dr. M had for me, and the nurse ended with: "I'll be in touch soon! If Dr. M writes a letter to shorten E's school days, can I send that to your home address?" YES, PLEASE! I took that as a very positive sign and literally, physically shook for the next hour out of nervous excitement. Could we actually get a doctor's note? That would be incredible and it would carry so much weight. We stand by our thoughts that Elijah's days NEED to be shortened or he will no longer be able to go to that school.

Elijah will be in school for one day next week (one day cardio appt and three days MEA), so we will be able to get him at least mostly back to baseline. Hopefully by the following week we will have a doctor's note in our hands! To be continued!

Goodness, this blog has been WAY too serious lately. We need to throw in some fun! I have pics and so many Sammy funnies to share. As always, thank you for taking the time to check in here!

Croup: Season 7, Episode 1.1 (Elijah)

Mild to moderate croup episodes do not earn their own episode numbers, but Elijah had a "dot-one" last night. It involved a barky cough and mild difficulty breathing. Compared to Sunday night it was a piece of cake. Dan and Elijah sat in a steamy bathroom and then in the cool outside air and after that things were manageable. He coughed a bit early in the morning, but all was well. He has been in bed for 2.5 hours tonight and we just heard a bit of a barky cough. It may be another night of mild croup, but we're praying for none of it!

The past two days have brought sleeplessness, anxiety and frustration as I continue to ponder and worry about Elijah being totally overwhelmed by full days at school. The scripted lines that have been delivered to me over and over make me want to scream at the top of my lungs. We continue to try connecting educators with doctors in an attempt to make things easier. As far as I know, this hasn't happened yet.

Dan accompanied Elijah on a field trip today. E seemed to have reached his limit by noon, so Dan brought him home (he thought ahead and had driven himself...SUCH a good daddy!). We are going to try sending Elijah to school the rest of this week and one day next week. Monday he has a cardiology appointment that will take most of the morning and Wed-Fri is MEA. This is perfect. We are hoping to finally get him back to baseline. After that, well....to be continued! I have a few ideas which depend on a few different factors. My top priority with this situation: making things less overwhelming for Elijah-->shortening his days at school-->doing whatever it takes to make that happen. If it can't happen, we will take him out of school SOON and figure something else out. We...HE...cannot go on like this.

It's a busy week! I'm in Cannon Falls working all week and Dan is working two new jobs (that makes FIVE jobs total for him). Despite the craziness, I feel like we have good perspective and we are so grateful for everything, including these new struggles. We know everything will come together and that good things will come of all of this.

Thanks so much for peeking in. I hope you all have a great rest of your week!

Croup: Season 7, Episode 1 (Elijah)

At 10:30 last night, Elijah began screaming. Then we heard the stridor. There had been NO signs of croup yesterday (usually I have a pretty good idea that it might happen), so both Dan and I were shocked to hear it. Elijah was more scared than usual, maybe because it had been so long since his last episode. It broke my heart to see him so afraid. We attempted a steamy bathroom, but I knew the croup was severe so I got meds ready downstairs knowing that would need to happen.

As we have always done in the past, we turned on a cartoon as an attempt at distraction while the neb ran. I could hear that the medication was working (thank goodness), but before it began to take effect he repeated, "PLEASE HELP ME!" between gasps. It was heartbreaking! This has not left my mind today. I thought of it a thousand times and my heart lurched every time. After the neb we gave him a dose of oral steroids and in standard fashion I wanted him next to me in bed. The ONLY time we let our boys into our bed at night is when they are sick, so it was a rare and special event! I could tell that Elijah was still rattled by what had just happened because he would NOT let go of me. Both arms were wrapped tightly around me and this is not something he does very often. I wrapped myself around him right back and said a prayer out loud: "Dear Jesus, please let Elijah know that he is SAFE, PROTECTED and LOVED." A few seconds later... "Mommy? You are loved, too, you know." It came from a very genuine place, which doesn't happen all the time with him. I am so grateful to be both his and Sammy's protector and to be one of the two people responsible for making them feel safe and loved! I love my boys so much!

His stridor came back a bit as the night went on (this is typical), but it never got bad enough to warrant too much worry. He had a runny nose today and sneezed a bit, but we didn't hear any more stridor. I gave him a preventative half dose of steroids before bed tonight. Dan is gone working all night tonight, so I'm PRAYING it'll be a quiet one!

We kept Elijah home from school again today, which was the third consecutive school day. We discovered that more than three days in a row warrants a doctor's note, so we'll reluctantly send him back tomorrow. Although it seems like five days away should be PLENTY of time to recuperate.....it's not. Not for him. He reaches boiling point much more quickly than the rest of us and it takes him MUCH more time to get below boiling point. I've been doing everything possible to get his days at school shortened. I talked to the sp-ed supervisor for our school district today and explained our intentions behind keeping him home and reiterated that he just absolutely needs shortened school days. She seemed willing to explore options for him, but....shortening his days are a last resort, as I suspected. As unique as Elijah's situation is, they are still going to do everything possible to keep him in school full-time. I haven't fully processed this yet, and I'm not sure what is going to happen. I know that we cannot expect him to carry on as is. If the doctor/school won't allow us to shorten his days, we are going to have to find another answer. A few options in my head at the moment: short-term homeschooling (while we find a school more suitable) or simply showing up at school at 1:00 every day to take him out. Apparently E's neuropsych and teachers have been unable to connect, but I'm PRAYING (soooo very hard) that the doctor will be behind our thoughts 100%. If he is, this should definitely carry some weight. 

The people from Elijah's school keep assuring us that they "realllllly want him in school," which is great! But....do they want what is best for him....and what is best for our family?

Please pray for a peaceful night for us! I'm a tiny bit on edge having Dan gone and being on semi-croup alert. Thanks for checking in! I have really fun photos to share from a family outing we took this past weekend. Maybe tomorrow I'll get them posted!

Doing what is best.

My frustration regarding our situation with Elijah and his being waaaaaay overwhelmed as a result of full days at school has turned into a bit of anger. Not with anyone, but with the situation. I am beginning to feel MAD that it is SO DIFFICULT to help our struggling child get what we know he needs.

Despite his teachers truly trying to help, we feel grossly misunderstood and underestimated. Elijah hit two different classmates today, and to be honest I wasn't surprised when I got the call. I knew something like this was coming and I told his teacher two weeks ago that if we didn't address the root issue things were only going to escalate. Because Elijah showed his teachers that he knew what he had done today was wrong, they believe that his actions are "behavior-related." We don't disagree! We agree that he is manipulating his teachers and displaying purposeful negative behaviors, but he wouldn't be doing any of these things if he wasn't well beyond his boiling point!

This is so hard and sad. :( Especially after last year, we REALLY want to have a trusting, good relationship with Elijah's teachers. At this point we do not feel supported in our decision to keep Elijah out of school, but ultimately....Elijah is our priority! Elijah's situation/history is complicated, but we know our boy VERY well. I've been saying this for weeks, but I'll say it again. If we want him to succeed/thrive/feel good/treat people kindly, he needs to return to baseline and then his days at school need to be shortened. So we have made the decision to pull him out of school indefinitely (however long it takes to get him back below his boiling point). In the meantime, we will do what we can to get him approved for shortened school days.

That's all I've got for now.

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.

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!

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!

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!

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!

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!

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!

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.

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!

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.