Tuesday, October 21, 2014

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!

Sunday, October 19, 2014

"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!


Monday, October 13, 2014

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!

Friday, October 10, 2014

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!

Wednesday, October 8, 2014

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!

Monday, October 6, 2014

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!


Wednesday, October 1, 2014

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.