Tuesday, December 30, 2014

TC is back.

We have been sooo lucky for the past few years in the realm of acquiring coughs. When Elijah was a baby, actually until he was 4 or so, he pretty much had a terrible cough through every winter. Tons of sleep was lost due to those darn coughs and they never seemed to want to go away. I remember considering The Cough to be an honorary member of our family, as it had a life of its own and never wanted to leave. There were stretches of time when I would sleep in our closet because that was the only place in our house where coughing couldn't be heard. Since Christmas break began, TC is back in our house in a way that he hasn't been in years. Since Elijah's croup episodes last week, he's been coughing like crazy. It has gradually become looser and it has disturbed his sleep less with each passing night. Sammy's cough started two days ago and has been getting worse. We brought him to the doctor today and the poor boy has bronchitis. He sounds awful!

In one sense it's been frustrating because I really wanted Elijah to get caught up over this two-week break. But on the other hand, THANK GOODNESS he hasn't been in school while this sickness ran through him. He'd be a double mess! At one point today Elijah was red-eyed and stumbling around and Dan said, "He is running on fumes....no, not even fumes. I don't know WHAT he's running on." He is so depleted still, but we have cleared our schedules for the next five days. We have nothing planned but rest and early bedtimes!

That's all we've got for now. Aside from the coughs and sickness, we have been enjoying spending tons of time together and napping and eating and playing games and reading books. I love my boys! Please pray for our sweet Sammy to HEAL!

Thursday, December 25, 2014

Christmas 2014

Merry Christmas! We had an INCREDIBLE day in our house, lounging and napping and playing games and reading books and watching Christmas movies. It was one of the most enjoyable Christmases I can remember, despite Elijah being sick. :( He got a second round of croup two nights ago and since  has been trying to cough his lungs out. Just tonight his cough became super tight, although not wheezy (there's a difference). Dan is currently out trying to find a store open that sells Vics so we can rub that on his chest. We gave him a dose of cough medicine and an albuterol/pulimicort neb (we haven't had to do this in years), but none of these seem to be helping him much. Please pray with us for healing for his body!

Onto the important stuff....Christmas! We had a memorable celebration with Dan's family last night on Christmas Eve. Elijah was a tired mess by the end of the night, but both boys had a blast opening presents and eating cookies (Sammy was doing his best to do more bargaining) and playing with cousins. We were awake for a lot of the night trying to ease E's cough, so we were all tired this morning. But Santa still came and we had a very memorable and awesome day. We are so blessed and thankful for everything and everyone we have in our lives.

Our boys just before leaving for Christmas Eve service..

As always, Elijah was up before the birds this morning. Dan and I pleaded with him to lie down in the loft (so he wouldn't wake Sammy up) yet not peek downstairs (so he wouldn't get a pre-glimpse of Santa's surprises). When "awake time" came, the boys were sooo happy to run downstairs!

Elijah has been wanting the board game Trouble for months, so he was SO EXCITED to unwrap it!

Sammy got Sorry!, which he was indifferent about. He was indifferent about a lot of things today. We are finding that if we expect him to be happy or excited about something...he acts very unexcited.

Oh my gosh, the loot!

Elijah picked out a Pluto stuffed animal for Sammy and it was his FAVORITE gift. He hugged it like this for a long time.

Dan and I spent the past three nights putting the boys' BIG gift together. A Lego Movie spaceship! Once the boys had opened all their gifts, we asked them to face me and close their eyes while Dan brought in the exciting stuff. :)

SURPRISE! Have you ever seen happier faces?

We started our morning with a GRATEFUL prayer (that Elijah spoke eloquently). THINGS definitely occupied our day, but we had greater purpose today. We are grateful for Jesus and the gift that HE brings this time of year. We hope you all had a wonderful day, as well! Thanks for checking in. xo

Monday, December 22, 2014

Croup: Season 7, Episode 3 (Elijah)....and Christmas excitement!

Elijah had a mild case of croup last night at 10:00ish. After ten minutes in a steamy bathroom and ten minutes outside, he came to bed with me (no neb needed, yay!). I don't think Dan will ever understand my need for bringing him to bed, but it puts my mama mind at ease. The rest of the night was ok, with some coughing. Today was a little rough since sleep was not ideal last night. We gave him oral steroids during his episode (and again tonight before bed), which pretty much guarantees terrible sleep. I have been praying so hard that we can get him back to baseline during this two-week winter break, but things are not looking promising at this point. 

We have started re-introducing technology back into our lives. We are going to see how the week goes. I'm convinced Sammy is a college professor somewhere in his spare time, coaching people on manipulation and bargaining. He got us to agree to eating FOUR peas tonight (he despises vegetables) in order to get a few bites of dessert. After we agreed to the four peas, he looked at Dan and said, "Ok, four!" as he held up two fingers. Seriously!

Today Dan and I decided to each take a boy and have separate "date days" with our boys. It was a Sammy-Mama day and an Elijah-Daddy day. Sammy and I ran a few last-minute Christmas errands and then had lunch at his establishment of choice - Applebee's. During lunch, I learned that Sammy wants to be a "firefighter daddy" when he grows up. I explained that firefighters need to be strong and therefore eat their vegetables. Also that he will first need a wife if he wants to be a daddy. He told me that he wants to have FOUR boys and have a "pretty and nice" wife. :)

The boys are LOVING the Christmas season this year more than ever! It is so much fun. I got presents wrapped last night and they ooo-ed and aahhh-ed over the gifts that sat "under the tree" this morning. Ohhh dear...our tree. This year we got the prettiest, biggest, fullest tree we have ever had before. It is beautiful! About a week into having it as a part of our family, Dan and I started commenting on how much water this thing could drink! "I filled it up twice today!" "Me too!" A few days later our house had a unique scent. Our tree stand had a crack in the bottom, we found, and we had been pouring gallons and gallons of water straight into our carpet! GROSS! We got a new stand and all is well now for our pretty tree, minus the lingering wetness and smell. We have air fresheners, fans and towels all over our downstairs. So our presents aren't technically under our tree yet. 

We are super excited about the next few days! When we said our bedtime prayers tonight, I was so happy to hear Sammy say, "I'm so happy for Jesus!" We try very hard to keep that at the forefront amidst this totally crazy time of year. It seems impossible sometimes, doesn't it?

I hope you all have a wonderful Christmas! Thank you so much for checking in!!

Wednesday, December 17, 2014

The runaway

I mentioned in my last post that the Sammy sass has been escalating. A few nights ago something very minor occurred in our home. I can't even tell you what it was, but Sammy turned it into a major ordeal. He said, "I DON'T WANT TO LIVE HERE ANYMORE! I'M LEAVING THIS HOUSE FOREVER!" I said, "Oh shoot! We will miss you so much! Please be safe. I love you, Sammy." He put on his coat, hat and boots and eagerly left with the door slamming behind him.

I perched myself next to our front window with my computer and acted like I was working as I kept a sideways eye on our strong-willed youngest cutie. I watched him walk halfway down our front yard and stop. He stood still for 10 seconds and then walked in a few circles. Then...he walked back to our patio and sat in a chair. I peeked my head out once and asked if he wanted to come back inside. "NO!" Okie dokie..back to my spot in the blue chair by the window. Our strong-willed Sammy sat for over 30 MINUTES in the cold before coming back inside. When he came back in, he acted like nothing had happened! "Hi, Mommy! I love you! What's for dinner?" I foresee some interesting teen years. :)

(ps: We are still abstaining from technology until the sass diminishes.)

When Sammy isn't trying to run away from home, he is telling me that he wants someone to sleep with him in his bed at all times. A handful of times over the past week he has told me, "I just want someone to sleep with me and snuggle ALL THE TIME!" Today I explained that someday when he has a wife he can do that every night! He was sooo happy about that idea!

Dan had a random day off work today and so did I. We took Sammy out for a lunch date and we made him feel very special. We asked him what he wanted to be when he grows up and he was adamant about wanting to be a fire fighter. I think he would be an incredible fire fighter!

Both boys have separate big days coming up to start off our holiday break. They are both excited! We'll share more later!!

Friday, December 12, 2014

Sass-quatch and fun photos

The sassiness I mentioned last week escalated at the beginning of this week. Sammy showed me a caliber of sass that I have never seen before. He did not want to go to daycare on Monday morning, so I carried him inside kicking, punching and screaming. I set him down and turned around to watch him run back out of the gate and into the alley (where cars speed through occasionally). Again, I carried him kicking and flailing inside and I have bruises on my shins to prove it! Elijah has had a really rough week sleep-wise and that has carried into his days at school and life in general. 

On most mornings, I get him out of bed in the morning and see two very tired eyes looking back at me. It makes me sad to see him so exhausted right away in the morning and to place expectations on him to behave appropriately for an ENTIRE day. We obviously have expectations, but I also know how he feels! When I have reached my limit, I am not nice! I understand his lack of control, but at the same time we can't let him get away with physically lashing out at his classmates, etc. Life is tricky for our precious E! We continue to learn and do everything we can to understand certain behaviors. He has been seeking physical closeness a lot lately. He constantly says, "Mommy, I need SNUGGLES!" as he plops his 6o-pound cuteness in my lap and insists that I cradle him like a baby. He needs love! And sleep! And a much less tired brain.

On Monday after Sammy's rough morning and after dealing with some rough behavior from Elijah, Dan and I decided to pull the plug on technology until things turn around. Neither boy has had phone, iPad, computer or tv privileges all week. They have both asked, but haven't put up much of a fight about it. We will keep it this way until things calm down (minus our Friday night pizza-movie nights which is very cherished family time).

Another crazy week is done! I am still working in Cannon Falls, which is great ($) but also not great (sanity/sleep). Once Christmas is done, I think you all may hear my huge sigh of relief echo around the globe. Isn't it crazy that this time of year is sooo stressful?! It should be just the opposite, but it's just not.

Dan starts a new job on Monday! He was hired by a nearby high school to be a paraprofessional. I am SO EXCITED and happy for him! He will be back in a school setting and it is such a great opportunity. Ok...I'm tired, so here are a few photos from the past few weeks.. 

Sam refused to be in the picture (of course), so I had to sneak him in. :)

Our tree this year is the BEST! It is huge! And so pretty. We love it and comment on its awesomeness approximately 25 times/day. I don't think we will ever have a better tree than this one.

This next photo is titled We Are the Griswolds!

Our very good friends Kendis and Chris stopped by for a visit over Thanksgiving weekend. It was SO good to see them! The boys were all over them. :)

The boys are great at dough rolling, I have discovered! Good thing, because I do not like rolling dough.

Sammy was super excited to put the star on the tree this year.

Our Sammy.. he is so thorough and completes projects with pride. He took tree decorating seriously and didn't stop until every ornament was on our tree.

Elijah helped, too! In his way-too-small jammies. :)

Every December, we build a gingerbread house as a family. This year the boys were SO EXCITED about doing this.

We all contributed to the cute sugary home and it was a fun family activity. And...as always, the boys did everything they could to talk us into allowing them to eat as much of the home as possible.

I hope you are all having a nice December so far! Wishing for peace and happiness for all of you! Thank you for peeking in.

Saturday, December 6, 2014

Like bbq sauce

This week seemed to last a million years. Dan has been working overnight two nights a week and it is starting to wear on us, in addition to Elijah's very early morning awakenings. In the past week he has been awake for the day at 1am TWICE. 2am once. 3am twice. His brain is still on overload. He still looks like a zombie when we get him out of bed in the morning. He is EXHAUSTED constantly. We are all exhausted. I have been praying so hard that Christmas break will bring him back to baseline so we can begin to live somewhat normal lives again.

Now for some Sammy funnies. This boy. He is sooooo sweet yet sassy. Mostly sassy lately, likely because he has been waking up super early due to a certain early-bird brother in his vicinity. Lately when we ask Sammy to do something, he replies with the most ridiculous comments. Examples:

Me: Sammy, it is not ok to line your meatballs up on the floor. Please put them back on your plate.
S: But I am a guy who cannot hold things!


Me: Sammy, please put your coat on so we can leave.
S: But I am allergic to touching coats!


Me: Sammy, it's time to go upstairs to get ready for bed.
S: But I am a guy who cannot walk. I'm stuck to the floor! Help!

Seriously. The sass from this boy has reached new heights. When he is sweet, though, he is the SWEETEST. He is the snuggliest boy in the world.

I have tons of photos to share from the past week, most of them involving our Christmas tree. I will post soon!

ps. Dan got a new job that he'll be starting in the next few weeks! Details to come!

Monday, December 1, 2014

Meeting in Room 103

I have said this a thousand times and I will say it again. We have been SO blessed with the doctors that have been placed in our lives to care for our precious boys. Dr. M traveled all the way to our southwestern suburb today to meet with Elijah's team at school. The meeting was AWESOME. Dr. M spoke as if he has known Elijah his whole life. The entire time, I found myself shaking my head yes...yep, that's our boy...yep, that's him....oh definitely yes, that explains Elijah..

He started by explaining that E has not just one or two strikes against him, but many strikes. The main ones being an extensive medical history, Nonverbal Learning Disorder and also being on the autism spectrum (some resulting strikes being sleep issues, anxiety and OCD). He explained the main aspects of NLD and how it is not a learning disorder but an information processing disorder. Also, how there are certain things that E's brain cannot do and will not ever be able to do, such as looking at a sheet of math problems and having the ability to prioritize the information and get through it without being totally overwhelmed. I could see things clicking with the teachers as Dr. M described how NLD kids react to school work and expectations and visual clutter.

Together, we addressed the main problem areas and even set a few plans in motion. Dr. M really stressed reinforcing SKILLS. For example, probably E's biggest "trouble spot" while in school is his inappropriate talking. Sometimes he blurts out noises and sometimes he says potty talk. Sometimes he calls people names for no reason at all. Since kids like Elijah think in steps and learn through a lot of verbal repetition, we came up with a plan to write out three concrete steps for him to follow when he starts to say an inappropriate word or noise. Dan and I are in the process of coming up with exact verbiage and then we will repeat, repeat, repeat those steps to him until he can stop the inappropriate sounds/talking before they happen. We will share our exact steps with the school so they can use the same words. Every time I talk to Dr. M, I gain some sort of new and valuable information. One of the things he said today that really helped me understand Elijah was that we (teachers/parents) need to keep repeating things to him until he understands....and that even though he might appear to understand and tells us he understands something, we will not truly know that he understands until we HEAR HIM REPEAT OUR OWN WORDS TO HIMSELF. Our scripts become his scripts. This is how he is going to get through school and life.

One of the things I've been saying for so long is that Elijah is confusing because at first glance, he appears to process information in a completely normal manner. He makes eye contact, he is engaging, he answers questions (mostly) appropriately and he smiles, laughs, interacts and even tells jokes. A person just meeting him could have a 2-minute conversation with him and have no idea the amount of processing that is taking place in his brain. So when you ask this engaging, smart little person to complete an abstract task like draw a picture and write a story to go along with it, you become confused when he absolutely cannot follow through. It can even be seen as complete defiance or manipulation.

Dr. M once again provided such good information. We feel very thankful for him and for E's teachers and team who were so willing to attend the meeting and who seemed so receptive (as they feverishly jotted notes in their notebooks) to understand more about Elijah and NLD in general.

I'll end on that thankful note. Next installment...the sassiest Sammy you'll ever meet. :)

Wednesday, November 26, 2014

Surgery, Santa and thankfulness.

Elijah did great today! Surgery was quick, with an easy recovery. It was one of the better recoveries from anesthesia that we've seen. I have been careful about saying what the surgery was all about in order to give him some semblance of privacy. It's sort of a private ordeal, so I don't want to scream about it from the rooftops. Catch me in person or over email and I'll explain! He was in a bit of pain afterward and had a mild fever. We will stay on top of pain meds through the night.

Elijah was, again, terrified of the mask. :( Also, again, terrified of removing the IV tape. I am thankful this is behind us! He was such a brave boy today. I could see signs of him being more self-aware than ever before, which was encouraging. He was able to recognize that he was feeling scared about specific things and he was willing to try tactics to not be so afraid. This is a first!

Dan and I always feel so terrible watching him endure pain, both physical and emotional, so we always allow him to pick out a toy afterward for being brave. So that Sammy never feels left out, we let him pick something out, too, for being a good and supportive brother. Today we picked out a toy for both boys to share, a new Lego Movie lego set! They were both SO EXCITED. Oh my goodness, they were happy boys!

One thing Elijah said repeatedly today in the midst of his discomfort was, "MOMMY! I miss you!" When I finally asked what he meant by that, he said that he missed me when I have to be at work so much. :( Ok, this kind of kills me. Obviously we all need to work, but I have been working an exceptional amount lately and obviously it is affecting our family. If Elijah can verbalize it, it means something. Thankfully things will start to slow down soon.

Here is the boys' photo taken with Santa from last weekend! (yes, I believe Santa's bare belly may be showing..)

Tomorrow will be busy, but I'm hoping we can take some time to breathe and be THANKFUL. We have so much to be thankful for. I am looking forward to four days of no work and tons of family time. Friday will be our annual getting-our-Christmas-tree day and we will spend the day decorating our house. We are all looking forward to the next few days! Thanks for checking in and HAPPY THANKSGIVING! Hug your family. Tell them how much you love them. Be thankful!!!!!

Tuesday, November 25, 2014

Accidental snot

Sammy was extra tired tonight and having a tough time getting through dinner. He threw his fork onto the floor and when I asked him to please pick it up, he did his I'm-stuck-to-my-chair-and-can't-reach-it routine. This went on and on. Dan brought him to our bedroom for a little timeout. A few minutes later, he quietly came downstairs and said, "Mommy? I'm really sorry for what I did in your bedroom." I asked what happened. "I accidentally rubbed snot all over your bed." Seriously.

Elijah had a few rough patches at school today, but he confessed a major one to us before we even heard about it from his teacher. This is a new and huge thing! The behaviors we are hearing about are not ideal, but it is a big step for him to communicate not just that "something bad" happened (or not to mention it at all) but to actually explain the details. We are thankful that he will have a big chunk of time off school. Tomorrow is surgery, so if you wouldn't mind praying for it to be quick, painless and successful we would appreciate it!

Monday, November 24, 2014

Package directions

Since I'm on a roll sharing Sammy funnies..

Today our boy who is ALWAYS looking for a way to get us to give him sweets said to Dan, "Daddy, it sure is cold outside! I bet some hot chocolate and marshmallows would warm us right up!"

Tonight after Dan gave him an Oreo cookie for dessert, Sammy said, "I think it says on the package that each kid should eat TWO cookies." Nice try, Sammy. :)

Today was another odd day involving LOTS of stressful driving on icy, snowy roads. We aren't sure how Elijah's day at school was, but his spirits sure were great at home tonight! Dan took him to get his pre-op physical this afternoon, so he is set for a minor surgery on Wednesday.

More later!

Saturday, November 22, 2014

Uniquely awesome day

I'm going to try to be so much better about writing down the things that make me laugh. On our way home from our friends' baby shower tonight, the boys were playing on our phones in the car. Sammy was apparently trying to purchase a new app, so when the little box popped up to enter my iTunes password he said in total seriousness, "Mommy? How do you spell 'I really want this game a lot'?" He was totally ready to type it in. :)

Today was very strange in a good yet tiring way. We started the day off with a Hope Kids event at the Mall of America. Hope Kids is an incredible organization that provides opportunities and events for a select number of kids who have life-threatening health conditions and their families. This event was awesome. It was held at an arcade inside the MOA, so the kids were able to play endless games and also make crafts, decorate cookies and get their photos taken with Santa. Sammy was particularly excited about seeing Santa for the first time and made a point to say to him, "Look at my monster shirt!" The boys had a blast and we even ran into their cousins, who are a part of Hope Kids, as well. We also saw a kindergarten teacher from Elijah's school who was volunteering for the event! I recognized her, but had never talked to her before. Just like the other kindergarten teachers at his school who we love so dearly, she is awesome! We let the boys ride on a few rides at Nickelodeon Universe and on our way to the car I ran into an old coworker who I hadn't seen in years!

After a family "nap" in our cozy, pillow-filled bed, we headed out again to the north side of the Cities for a baby shower. Two of our skydiving friends are expecting their first baby and are back from Florida for a few days, so we couldn't pass up the opportunity to see them. It was such a fun treat to spend time with them, as well as the rest of our skydiving family. Elijah and Sammy (and us, too!) were EXHAUSTED at the end of it all, but it was such a unique day filled with different kinds of fun and people from different parts of our lives.

And that is all! I'm off to work for a bit and then snuggle with my hubby!

Friday, November 21, 2014

Inner-lasting gom-stompers

One of the many things I have learned in the past few years is that nobody wants to hear me complain about how busy we are. Our busy-ness is no different from your busy-ness. We're all running the same rat race, trying to earn money and spend time with our kids and balance a hundred spinning plates simultaneously.

Like the rest of you, we are desperately trying to keep our plates spinning. I feel guilty constantly about not spending enough time with my three boys, but I am starting to see the light at the end of the tunnel. The time I do get with them is so sweet. I sped home from work tonight and made it in time to catch the tail end of pizza-movie night. Sammy snuggles have never felt soooo good and the love bouncing around our little living room walls has never made my heart feel so full.

I have to throw in some light-hearted goodies first tonight! Sammy says things constantly that make us laugh. He has always been so funny and creative with his words. I have not been as good lately about writing everything down, but have remembered a few.

We haven't let the boys watch Willy Wonka in a while because Elijah was imitating Veruca Salt's whiny, icky talking way too much. One of the things from the movie that the boys still talk about is everlasting gobstoppers. Except, Sammy pronounces it "inner-lasting gom-stompers."

When I get home from work or when I'm putting the boys to bed, Sammy says to me, "Mommmmmmmmy! I want you to be with me forever. Never leave me. Stay with me for 101 hours!" He likes to wrap his entire torso around one of my arms and say, "I missed you sooooooooooooo much." Sometimes he adds, "And I missed your phone." :)

Tonight Sammy was trying to convince all of us that he had a second middle finger on his left hand and that it got stolen. "A policeman came to get it. My second middle finger is in jail!"

Elijah's behavior at school and at home has been up and down, slooooowly descending out of the boiling point (but still very much in the boiling range). He's had some great days and some not-so-great days. Still, his sleep continues to suffer due to his brain being overwhelmed and exhausted. Every third night or so he sleeps great, but the other nights are awful! This morning he was up FOR THE DAY at 1:00am. You did indeed read that correctly.

I just got done reading an awesome book. I want Dan to read it and then I want to implement some strategies from it. It focuses on understanding that kids like Elijah are severely delayed in certain ways and are totally incapable of handling frustration and change and responding to direction like most others. The author suggests an approach to parenting that Dan and I have never tried. I'll explain more once we start!

We continue to trudge on, hoping that his brain will eventually catch up and be at a more peaceful place. A long weekend next week will help, but throw in a little surgery and family commotion and it might not be as much of a recovery as we'd like. It feels like we will never get him back to a good spot, but I have to remember that we are doing our BEST right now. Literally, we are doing everything we possibly can, short of removing him from school until he is recovered (this would take weeks, so isn't exactly feasible). Just keep swimming....just keep swimming...

We have a few fun things planned for tomorrow that the boys are super excited about! We have to squeeze them into a compact timeframe in order to lessen stimulation for E, but it'll still be tons of fun. Thanks for checking in and have a great weekend!

Saturday, November 15, 2014

Croup: Season 7, Episode 2 (Elijah)

While Dan was working overnight two nights ago, I heard some screaming over the monitor around midnight. I almost always approach Elijah's bed first, as he is typically the one yelling for me. He had croup. I plucked him out of bed and brought him into the bathroom to determine how severe it was. It was mild, thank goodness. I turned on the shower and hugged him tightly for ten minutes. Afterward he sounded slightly better, so I gave him a dose of oral steroids. Turns out, he slept horribly the rest of that night and the night after. Any medication in his body kills his sleep! We are praying for a much better night of sleep tonight.

We spent a super duper low-key day at home today. We cleaned, cooked, colored, did laundry and played. It was nice. Really nice. Minus church (can't wait for church!), tomorrow will be much of the same. Thanks for peeking in! Have a great rest of your weekend.

Wednesday, November 12, 2014

IEP meeting 2014

We had possibly the most positive and promising meeting (of the seemingly 100) that we have ever had with Elijah's team at school. This was his official IEP meeting where we put plans in place for the next year while he is in school.

I requested starting the meeting with a little talk and the team allowed the overly protective mother to speak. :) Since Dr. M couldn't join us (he will be joining us on Dec. 1!), I wanted to stress the pervasiveness of NLD on Elijah. I explained how difficult it has been to get people to understand what WE know about him, so I attempted to describe it with a visual aid.

When Elijah is at his best, he is riding just below boiling point. Boiling point is the point we all get to occasionally when we stretch ourselves too thin, don't get enough rest and don't give our bodies proper nutrition, etc. When we get to that point, we begin lashing out at others, we are unable to control our emotions and we don't sleep well, among other things. It does not take much for Elijah to get into the boiling range. Once he is there, it takes him a looooong time to come back down. This process can take weeks or months, depending how thin we stretch him. A more typical progression into boiling point is a much more gradual curve. It takes time for most people to reach that stage and once we get there it is much easier to come back down to a normal range.

An important thing to point out is WHY Elijah is like this. Why does his baseline sit just below boiling? At some point during, before or after his birth, his heart condition and resulting improper bloodflow/oxygenation damaged some pathways in his brain. This caused his brain to re-route, like a detour. Imagine yourself driving down the road, intent on a destination. Maybe you have an appointment you have to get to within a certain timeframe. Suddenly you encounter a detour. You are forced to stray from your path, taking turns on uncertain roads and at times going in the complete opposite direction from your destination. Eventually, though, you return to your path and you arrive at your destination, although you are now frustrated, tired and LATE.

This is how Elijah's brain operates, which carries the label Nonverbal Learning Disorder. He can arrive at the same destination as the rest of us, but it taxes his brain to do so. Interpreting a social situation or processing a busy, noisy grocery story might be enjoyable things for him, but they require a lot of extra processing. This puts his brain into overload, which renders him incapable of doing much beside just scraping by.

Elijah's team was so awesome. They were receptive to my little speech and said so many positive things about our oldest boy. They described him as friendly, happy, smiley, affectionate and kind. His teacher told us that he is the most affectionate student she has EVER had. Just like at home, he always seeks physical closeness and hugs from adults he trusts. They seemed to understand that his negative behaviors stem from the NLD and that it was going to be a process to get him back to his baseline. In the past few school days he has been showing signs of improvement with name-calling and aggression, which we all see as a very positive sign.

There are a few strategies in place which involve OT, social and behavioral coaching/intervention. Starting immediately, he will receive two 30-minute sessions away from class with his sp-ed case manager every day, as well as 15 minutes each at the beginning and end of each day where he can gradually integrate into and out of class. In addition, he will receive 15 minutes twice/week with his DAPE teacher (adaptive PE). We will continue doing partial days and re-evaluate at the end of December. I made sure to let the team know that Elijah is likely (99.99%) to not be ready to return to full days any time this year unless we want him to soar back up into the scary realms of boiling. Mr. F assured us that nothing would be written in stone regarding length of school days, so we can play that by ear. I asked about getting Elijah an aide, and Mr. F explained that the resources aren't available at this point to give him an adult dedicated solely to him. However, he is hoping to shift aides around a bit to accommodate E a bit more while he is in the classroom.

I am looking forward to our meeting with Dr. M on December 1st. I know he will have insight to share with E's team. We plan to bring him down to the classroom to ask for suggestions about reducing E's visual processing. We are so thankful that his team is willing to attend yet another meeting to better understand our oldest cutie and we are thankful that we have a(nother) incredible doctor who is willing to go to great lengths to make his life more successful.

That's all for now! Dan and I have not spent time together since last Wednesday, so I must go snuggle with him. This coming weekend will be a much-coveted time together as a family. ALL of us will be together! I can't wait! Have a great week and thanks for peeking in.

Thursday, November 6, 2014

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!