Neuropsych and IEP updates

We had two BIG meetings in two days. Yesterday Dan and I met with Elijah's awesome neuropsychologist to discuss results from recent testing. Dr. M asked to see Elijah back before fourth grade because significant changes occur in the brain right around this time. The testing showed similar findings from the last round that took place at the end of first grade. His verbal skills exceed visual by a lot. He is still a verbal communicator and learner and struggles with visuals. The good news is that he has made gains in both areas, but there is still a large gap between the two. He still has major deficits in self-awareness, organization and executive function.

Nonverbal Learning Disability is still an accurate diagnosis that describes his challenges well. Dan and I were amazed to learn how much the testing revealed that he retains. His brain retains literally almost everything that goes in, but getting him to explain it or "prove" that he knows it is the challenging part. It takes a unique strategy administered with persistence and consistency to reveal all that he knows.

There is a test Dr. M gave him that had such cool results. He showed E an abstract picture that contained various random shapes that were all connected. He let Elijah set the picture in front of him and asked him to draw a replica of it. A typical brain would look at the collection of shapes and make a plan (I'll start with the big rectangle and I see that there's a big X going through the middle; now I'll draw the triangles on the sides, etc). Elijah's brain sees a chaotic mess, so he drew something that looked somewhat like the picture but it was disjointed and with no order. Dr. M removed the picture and 30 minutes later asked him to draw what he remembered of it just from his memory. Elijah drew a couple individual shapes that weren't connected and looked nothing like the original drawing. THEN the really cool part.. 30 minutes later Dr. M showed deconstructed parts of the same picture to Elijah one at a time along with trick parts that had NOT been a part of the picture. He asked him to identify the parts he remembered being in the picture and he got 22/24 correct. Amazing! The results of this test tell us that he retains MUCH more than he is able to express.

Coincidentally, Elijah's annual IEP meeting was this afternoon. I was so glad to have fresh words from Dr. M in my head to relay to his teachers. We reiterated everything he told us about how to create a successful learning environment for Elijah and even shared his 18-page report with them. This was one of the easiest, smoothest IEP meetings we've ever attended. His classroom teacher and case manager had "the look" of understanding after Dan and I talked for just a few minutes. Last year and the year before I remember talking until I felt like crying and looking up to see eyeballs glazed over.

We explained that he is a VERBAL learner and that he needs to understand the PROCESS, not the problem. Immediately they began formulating a plan to create verbal and written scripts for him while he's at school. YESSSSSS!!!!! This is what we've been trying to get his educators to understand since that first round of testing! Such relief.

I've been a bit on overload thinking through all of this. Processing information is exhausting! :) Buddy is healing from his little surgery and is super needy. We are all so ready to move into our new house. And we STILL haven't received results from Elijah's day of mega-testing in August. In my gut I know all is well or I'd push. We'll get results for sure at his next urology appointment in early October. That's all for now! Thanks for peeking in!

Cardiology check-up and IEP meeting

The past week has been FULL and filled with great news! On Friday we took Elijah to his 6-month cardiology check-up. Instinctively I knew everything would be good and that turned out to be the case! His heart function and pressures are the same as they were six months ago, which is pretty incredible. For the past 2.5 years not a whole lot has changed with his heart even despite him continuing to grow. Dr. G told us to keep doing what we're doing and to come back in six months. One of these years Elijah is going to need a heart cath, but it's impossible to know exactly when (we thought it would need to happen almost 2 years ago!). And after that, he'll need another open heart surgery but we will have to play that by ear, as well.

Our second bit of GREAT news comes from E's IEP meeting today! I know. I have never used the word "great" to describe an IEP meeting. It sounds like the same positive changes we have seen at home in the past few months are being seen at school, as well. Every person who spoke in the meeting today talked of significant positive changes from last year. His two main struggles are blurting out inappropriately and staying on task while completing school work, but compared to last year he is doing SO much better in both areas. I told his team today that for the first time in TWO YEARS, we are not just scraping by. We all have extra energy for things in the "other" category, which feels sooo good. For the past few years, anything "extra" that came home in his backpack (extracurricular opportunities, fundraisers, etc) went straight in the trash can after a loud "HA!" escaped my mouth. This year some of those things are actually feasible! It feels amazing and we are so incredibly thankful for the changes and the way this medication helps his brain. It felt good to sit down and chat with Elijah's excellent educators and not be totally sleep-deprived and edgy and anxious. It was a relaxed meeting and we were able to discuss how to help Elijah above and beyond just getting him through each day. The main objectives in this year's IEP are improving his social skills, helping him to be more self-aware and to get him to advocate for himself when appropriate. He is actually making strides in these areas already, which is awesome!

To go along with the more-than-scraping-by theme, Dan and I have pushed ourselves in some areas, as well. After technically being a part of a small group at church for two years and NEVER going to a single gathering, we finally went to one on Sunday night. We got a babysitter to come put Elijah to bed (since we still can't skimp in that area quite yet) and brought Sammy with us so he could play with some of his sweet friends from Sunday school. On the drive home he said, "Mommy, this was the best day EVER. I love Hayden's house sooo much." Dan and I felt a good connection with the group and we are excited to get more involved.

This is my second week working in Cannon Falls and it's going fine. The mornings are EARLY, but I have to be home by 3:00 for the bus so it's a short day. It's good to have the extra money (Christmas $$!) and I love the people I work with. The boys have the rest of the week off school, so they'll be going to daycare for a couple days (pray this goes well).

Here's to many more great weeks! Thanks for checking in!

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.

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!

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!

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.

Anticipating second grade

I have State Fair pics and some other fun bits to share, but I have a few dozen things ahead of those things on my to-do list. For now I'll write a quick post to say that we are all doing well! The little boys and I went to Elijah's second grade open house tonight. I cannot believe my big boy will be in second grade! It's surreal to consider our journey and it takes a lot of effort for me not to cry when I think about it. I think his teacher is going to be a really good fit. I was very happy with our interactions tonight. She is KIND, very warm, engaging and she made an effort to make Elijah feel important. She knew of his hearing difficulties, so she made a point to ask about seating and what would work best for him.

We are trying to be as proactive as possible, so Dan and I have a quick meeting with Mrs. G in the morning. I'd like to discuss Elijah's challenges in a nutshell and what helps/hurts. I'm hoping it will help him get through the first few weeks without any issues. His IEP meeting is scheduled for 9/10, so we'll get deep at that point! :)

Other than that, we are doing our best to get Elijah as much sleep as possible (some nights are better than others) and make him feel as safe as possible as we prepare for a new school year. We might spend a night at the dropzone this coming weekend, but we plan to lay low these next few days before school begins.

Thanks for checking in! I hope you're all having a great week!

Words.

This beautiful weather feels incredible! Finally! We have been spending a lot of time outdoors and it has felt amazing. I brought Sammy to Kohls tonight to do a little summer clothes shopping and he was SO excited to pick out summer shirts. "MOMMY! It's finally SUMMER! I can wear hot summer clothes!" He has refused to wear anything but shorts and t-shirts (only shorts/short-sleeved jammies, too) for the past week. No socks. Just crocs and plain ol' summer clothes. I love it. We're in summer mode.

I'm going to TRY to make this quick. I got a call back from Dr. M today, E's awesome neuropsychologist. He took 45+ minutes to chat on the phone, which I appreciate immensely. He didn't understand why the school social worker had 1) been so negative about getting Elijah labeled with ASD through the school system and 2) why she had expressed her opinion on the matter to me at all. According to him, it is typically much easier to get an ASD label through school than it is in the medical world. Basically all of the testing on Elijah has been completed, so minimal work on their end would need to be done to get things going. He suggested that I just make sure a date is set to do the ASD testing, whether that be this year (not likely) or right away in the fall. In reality, the label doesn't matter. As long as he has an IEP and his specific needs are spelled out, that should cover him. We need to educate next year's teachers about NLD and provide him with the best classroom experience possible. Stated simply: We need for his caregivers to understand Elijah!

I asked Dr. M for some advice on interacting with Elijah at home. I gave him a few examples of issues that happen repeatedly (multiple times/day) and that have been issues for years....with no real learning occurring. He explained again to me that Elijah can't always make connections. Even if he can repeat a connection back to us, that doesn't mean he truly understands it. So it's not a matter of teaching him a lesson repeatedly in hopes that he will eventually "get" it. Instead, we need to teach him skill development. Example: when he becomes frustrated with Sammy (when Sammy steals a toy or interrupts his play), he gets very frustrated and either hits him or head butts him or screams at him (or all of the above). Dr. M suggested teaching him other ways to deal with frustration and repeating that until it becomes a habit. Tonight I did role-playing with him. I pretended to be Sammy, stealing a toy. I told him that if he felt upset or frustrated that he needs to take a step back, stomp his feet, call for Mommy and get help. THEN....if he did all of that appropriately, he'd be rewarded with computer time or a treat of some sort. We did this a handful of times and he was loving it. Then before bed, Sammy came up and swiped a toy right out of E's hands. Thankfully I was right there and prompted E. "Elijah! This is frustrating! What do you need to do?" He did exactly what we had rehearsed downstairs. He took a step back, stomped his feet and asked me to help. We will need to re-enact these sorts of scenarios repeatedly until he learns them.

I asked Dr. M about Elijah having such incredible visual recall when I asked him about our trailer at the dropzone. He said that made total sense, as long as the trailer is a positive thing for him. As long as E is interested in something and truly enjoys it, he is going to be able to have good visual recall. He told me that if I asked him to recall the trailer in a different way, such as, "If you are standing by the bunk beds, what is behind you?" he would have a much more difficult time. It is so interesting and challenging learning to think the way he does. This is going to be such a process, but we're up for it! Anything for our boys!

Over the past few weeks we have stressed even more than usual the importance of WRITING things out. We bought a THIRD white board for our home. If we had a money tree and I could buy anything I wanted, I'd buy an entire white board wall for our home because Elijah loves them so much. He will sit and do endless hours of math problems, spelling tests and even writing poetry on white boards. We bought an extra large one today for this reason and he immediately sat down and wrote a poem, accompanied by a drawing. He read the entire thing to me (twice) and was so proud of his work. This is something that he could not express in any other way at this point.

The next three days are filled with crazy work for me. A day in Cannon Falls and two weddings, whew. Sunday will be a day of rest together and then Dan leaves for a 6-day DC trip. Life is crazy! Thank you so much for taking the time to check in! Wishing you all a great rest of your week.

Special education re-eval/IEP meeting, 2014 version

Dan and I survived Elijah's 1.5-hour-long special ed re-eval/IEP meeting today. We reviewed 22 pages of notes on our boy! Whew! We feel like most of his team (after much testing/observing in the past few weeks) has a really good handle on him. Dan and I were fully engaged and made sure every little thing was addressed. It was good. There are some really great new advocates on his team, which is reassuring. We both felt a good connection with his Deaf and Hard of Hearing (DHH) and audiology advocates, which feels good considering his new "disability" label is DHH. Because of this, he is also eligible for Developmental Adapted Physical Education (DAPE). This is good news, too, since his DAPE teacher is WONDERFUL and we feel like she really gets him...and genuinely likes him.

If we felt like everyone really loved Elijah for the wonderful little person he is, we would feel much better about sending him to school every day. Currently we don't feel settled in general about sending him to school, which leaves a pit in the bottom of my stomach. He has had two good weeks of half-days, so we are praying for the absolute best for when he returns to school full-time (probably in two more weeks). We are super thankful for his advocates who love him! His DAPE teacher gushed about him today, telling us how much she loved him and enjoyed seeing his happy smile. Hearing things like this are good for my mama heart!

In a nutshell: academics are great, social skills are poor, responsibility/organization is poor and emotional/behavioral regulation is poor. None of these things are surprises to us. His near-deafness on his left side is thought to be a major contributor to frustration in class, leading to negative behaviors. We need to work on helping Elijah advocate for himself and also control his emotions. These are the main goals for the remainder of first grade.

Tomorrow Elijah turns SEVEN! Dan and I reminisced tonight about what we were doing exactly seven years ago tonight. Ugh, that was a tough one. We are so grateful for the past seven years and how far our oldest boy has come since then. It's incredible! Tomorrow Elijah has requested: lemon cupcakes and dinner at Applebee's! :) Despite the expected blizzard, we'll do it!

Thank you for checking in!

IEP meeting

I wanted to write an update about Elijah's IEP meeting before I headed to bed. After a few really tough months dealing with behavioral issues, I didn't know what to expect. Despite my worries, it went great. Elijah's amazing special ed case manager began the meeting by having everyone say what their favorite thing is about Elijah. Every person said pretty much the same thing: "I love his big smile and how happy and friendly he is." :) He makes people smile!

As far as his IEP plan goes, Elijah is doing great. And in the behavioral realm, he has improved a lot in the past 3-4 weeks. He is officially done with speech, which is great but also a bit sad. His speech therapist has been with us since he was a little guy. She is amazing and we all adore her. It was sad to say goodbye today.

The PE teachers are doing a great job of working with Elijah in the large group PE class and also in his pull-out small group. His sass pops up occasionally, but they seem to deal with it appropriately. He is obviously slower than the other kids, but seems to be doing the best he can during PE.

His OT has made some really great observations during Elijah's "tired time" in class, which typically occurs after 1:00. She noticed that a lot of his undesirable behaviors occur when he is overwhelmed, which is a common theme at home, as well. She is going to create a daily calendar for him so that he can cross off "little" tasks as the day plays out. We do this at home, too. One little thing at a time!

His case manager wants to continue working with him on being independent with daily tasks such as putting on his coat and zipping it up without complaining. These little tasks are a constant struggle at home, so we appreciate help in this area.

E's teacher has a new approach with getting him to accomplish tasks in the classroom. She made really fun little punch-cards for him. Any time he does something positive he gets a punch in his card. After 20 punches, he gets rewarded. Today he received 3 punches and he was so excited!

The next trick is figuring out a way to keep Elijah under the special education umbrella after he turns 7 years old in February. His current label is "developmental delay," but at age 7 that can apparently no longer apply. In my opinion, he still very much needs to have special ed services. Without them, his teacher would bear the weight of about 5 or 6 people while he is at school. We have a meeting scheduled for December 11th to discuss this further. Please pray that we can come up with a way for him to continue receiving the help he needs while he is away from us! He definitely needs it and we will rally for it.

Thanks for checking in and I hope you all have a wonderful weekend!

Sleep insight

Dan brought Elijah to see the sleep specialist today at Children's. In a nutshell, we need to reset Elijah's sleep cycle. This is pretty much what we already knew, but she gave us a few key pointers. We had been having him do light therapy, but stopped a few weeks ago because it didn't seem to be helping. We had also started giving him melatonin occasionally at night, which we learned today was probably hurting more than anything only because of our timing. What we want to try to do is decrease his melatonin levels at night (consistent light therapy should help with this) and increase the melatonin in his body when he starts to stir in the early morning hours, around 2-3:00am. What we will begin to do is get up around 3:00 (or earlier, if we hear him stirring) and squirt a few drops of melatonin drops into his mouth. The doctor's hope is that after four weeks, he will have a much more normal sleep cycle and will not be waking up so early. If there is no change in four weeks, we will borrow a device from the clinic that would go onto his wrist and measure night-time activity. I'm feeling hopeful! Giving him melatonin in the early morning (as opposed to right before bed) is something I NEVER would have thought of on my own.

Early tomorrow morning Dan and I will attend E's IEP meeting. I have such a pit in my stomach about it, but we are praying for the best!

I'm off to enjoy my brand new computer set-up! It's unbelievably awesome! I have been editing thousands of photos on my little 13-inch laptop for the past two years. Now I have a gigantic monitor that I barely know what to do with! So exciting!

Thanks for checking in! Have a great Friday!

IEP meeting and BATHS!

Yes, you read that right. Sammy is now willingly taking baths! Finally! We had to trick him a bit, but it has been working. We have started putting Elijah in the bath first, not saying a word to Sam about getting in. Eventually, Sammy decides for himself that, HEY! That looks like fun! And he comes over to join his brother. Only because it was his own idea. I have never known a more independent person than Samson David Porta.

I posted this photo because you can see Elijah's lazy eye here. We especially notice it when he's not wearing his glasses, but it occasionally happens when he is wearing his glasses, as well.

Dan and I attended Elijah's Evaluation meeting and also his IEP meeting this afternoon. I always get nervous about these meetings because sometimes it is hard to hear about all of the things that are "wrong" with our boy. These meetings get much easier the older he gets, and the more I get used to attending them. Back when he was really behind in every area, they weren't so easy.

Today's meeting was good. Dan and I are so proud of how far Elijah has come. As we sat and listened to everyone talk about concerns and areas that need improvement (and ALSO how smart and friendly and likable he is), I remembered where he was at three years ago. He has come so far. Incredibly far!

The nurse who attended the meeting said the most perfect thing. She had read through Elijah's medical records (which we very much appreciate), and she said that people who have valve replacements need a lot of time to function at full capacity after the replacement occurs. For the first few years of his life, he lived with a temporary valve and also with very low oxygen saturation in his blood. As the nurse said, HE IS JUST BEHIND. He started late for good reason and he is just behind. This is what has been on my heart so strongly for the past six months. He had such a late start, so it is understandable that he has so many delays. 

There are literally 26 pages of information about Elijah that we went through today. We are so very grateful to have such amazing and focused care for him. His "team" is seriously awesome, you guys. We are blessed beyond words.

In a nutshell..

Elijah's academics are a non-issue. He is above average in this area. He is finally interacting with his peers at a "normal" level, which is music to our ears. 

Concerns: His fine motor skills are very delayed and they are starting to get in the way of his productivity in class. For example, he needs helps twisting the glue cap open and closed and turning pages in a notebook, so he spends his time asking for help instead of accomplishing tasks. Winter is almost here, and he is unable to snap and button and zip and tie. That means that time will be taken away from other important tasks as he tries to get these things accomplished.

As has always been the case for him, gross motor is a concern, as well. He is unable to keep up with his peers. We were encouraged to hear that although he cannot keep up or physically participate in the way that his peers do, he adapts well! He can't jump while turning in a circle, but he can do his own little circle dance and accomplish it as best he can. He can't sit unassisted for the entire circle time, but he leans and adjusts his weight and body as he needs to. He can't keep up with the kids while they walk to the library, but he does his little half-run that gets the job done.

And the other main concern was Elijah's distractibility and his need to constantly repeat things and have things repeated. Dan and I can relate very well to this concern, as we remind him to do things CONSTANTLY at home. Repetition is a major theme for us. 

So there it is. Elijah is behind, but he is making progress. He has very good reason to be behind. We support and love him and we will do anything in the world to help him continue to catch up and be the happiest person he can be. We feel so incredibly thankful that he has such a caring and competent care team. Honestly, they are the best. Elijah is one lucky little guy. 

And our Sammy. We love him so very much. He is a cute, smart little boy. My most recent prediction about him is that he is going to have a love for music. He can tell me the name of any instrument just by sound and he has this natural, deep little singing voice. He still loves to snuggle, and every night he has to sleep with his blankie ("bebe"), blanket ("banket," which he likes for me to cover his back with when he goes to bed), cow ("Cowwy") and bear ("Baloo"). He often talks to and cares for the stuffed animals in our house, which is the cutest thing.

I love these precious boys!

Thanks for checking in! Have a great weekend!

Our week

Here I am, on the other end of my first week at "work." My new job went well! I will be working my butt off while I'm there, but that is good. I like staying busy when I'm away from my boys. It makes the time fly by!

On Wednesday morning Dan and the boys and I attended a pre-IEP meeting with Elijah's care team. Honestly, I did not know what to expect. I went into it not knowing if I would leave smiling or crying.

The meeting was awesome. Seriously awesome. There were 7ish people in the room besides us Portas. Two teachers, a case manager, a psychologist, a speech therapist, a PT, a nurse, a special ed teacher and....maybe 1 or 2 more (it was overwhelming). They all spoke about their personal experiences so far with our oldest boy. Every single one of them had nothing but positive words.

In a nutshell, Elijah is well above where he needs to be academically. He is respectful in class, he communicates well with his teachers and he interacts positively with his peers. He still prefers to interact with adults over children, but when redirected he does great.  One of his teachers made the comment that Elijah is particularly witty. She said that he interjects witty statements that are always time-appropriate. They were pretty impressed by that.

His speech therapist thinks he is doing great. There are a few sounds (ch, sh and th) that she continues to work with him on. She comes into the class two times per week to work with him. I love that she comes into the class (as opposed to removing him) so that his day is not disrupted.

The PT wants to do some evaluating to see where he is at in relation to his peers. She could potentially be working with him to strengthen his core and get him caught up with gross motor. He still sees outside OT/PT weekly, but we will take all the help we can get.

The nurse asked questions about his medical history and limitations he might have. We signed a handful of release forms so she could see his information for herself.

The psychologist asked about his potty issues, but since he does not have issues while at school she was minimally concerned.

At the end of the meeting, I looked at one of his teachers in the eyes and said, "You have encountered NO behavioral issues with Elijah?!" She said, "Nope!" This is great! He is saving it for us, which I am completely fine with.

While I was gone this week, Dan experienced relatively good behavior from Elijah. I think it was VERY timely that I left for a few days. I was at the end of my mommy rope. When I came home last night, I was more than happy to spend endless time with my precious boys. A little bit of time away, after a long summer together, was a good thing.

I will end with a few more funnies!

Sammy has grown very attached to Elijah's stuffed bear, Baloo. Baloo has been with Elijah through every single one of his hospitalizations and surgeries. He is a very special bear. Within the past two months, Sammy has taken a special liking to Baloo. He sleeps with him every night, and always needs to know where he is in the house. Tonight Sammy was playing with the new Goodwill ($2!) barn Dan bought for the boys, and I looked over to see that Sam had placed Baloo underneath the silo.

Elijah and I laughed for five straight minutes. Poor Baloo! Eventually Sammy removed the silo and gave Baloo "woves." (loves)

Here are some Elijah gems that I posted on Facebook this week..

Life is pretty weird and crazy these days, and so I appreciate these pre-bedtime words even more than usual:
"Mom, you are the Saturn in my outer space."
"You are the milk in my milk truck."
"You are the bee in my bee hive."
And then...
"I love you very, very much, pretty mom!"

"My favorite friend in school is Autumn. I used to think it was 'Bottom,' but it's not. It's Autumn."

"Mom, are there cages in heaven?"

"Mom, you are the 19 in my month of September."
"You are the ostrich in my jungle."
"You are the peach in my tree."
"You are the garbage in my garbage truck."
"You are the stairs in my castle."
"You are the fresh, sweet tomato sauce in my jar."

Hoping for a wonderful weekend for you all! Thanks for checking in...xo

Installment 4: The Dirty Face Brothers

This is my last Dirty Face Bros post! I'm still very far behind with posting pics, which I guess is a good thing. It means I've been taking a lot of photos!



We attended Elijah's IEP meeting this morning, and it went very well. Elijah has made HUGE strides in every area of development: social, gross motor, speech, fine motor. His teachers had many positive things to say about his progress and about him as a student and person. He still has catching up to do in most areas, but not as noticeably as a year ago. They are going to spend this year preparing him for Kindergarten in hopes that he will be much more self-sufficient by this time next year. KINDERGARTEN?! How the heck did that happen?!



His teacher mentioned that he has started initiating interactions with other children, which is AWESOME. He still has his favorite little friend at school, Laura (Woe-yuh). She also said that he is a well-liked little guy, and that academically they have zero concerns. Apparently when they were asking him to count, he started counting backwards. :) I asked his teachers if they knew he was starting to read and they seemed surprised. His speech therapist mentioned that he seems to catch onto concepts a lot more quickly than the other students. So, yay for a great IEP meeting! We absolutely love his teachers and therapists to pieces.



Elijah earned enough potty quarters to get his Ken doll. Ken dolls aren't what they used to be! They are so fashionable these days, with the Justin Bieber hair and all. Elijah loves it, though. I hear him occasionally explaining things to Ken. "This is how you go potty, Ken. Pull down your pants and then you sit on the potty chair!" Ken is learning a lot! And he "sleeps" in a casket on our kitchen table every night. It's actually the plastic casing from the package he came in, but it looks like a casket. It's a little bit creepy to see that early in the morning.



My sweet Sammy and I have been having some special bed-time moments lately. He allows me to sing to him again. For a long stretch (the entire summer/fall), he just wanted to be put in bed. The boy loves his sleep. So it has been nice being able to hold him for a bit again and sing and snuggle before bed. When I put him into his crib, we play a form of peek-a-boo involving pig noises. He laughs so stinkin' hard. It's difficult to stop because he gets so sad when the game is over, but luckily he forgets quickly and goes to sleep.



Dan has TWO more weekends away from home and then we get him back! I cannot wait for an entire weekend with all of us together again.



That's about all for now. I have apple orchard and corn maze photos to share I'll try to catch up over the weekend.



Thanks for checking in on us! (This is Sammy's new favorite place to sit in our house.)

Foot in mouth disease

I discovered today that people from Elijah's school have been reading our blog this week, which bums me out a little bit. I never intended for certain people to see what I wrote here, although I do realize that this blog is fair game to anyone who has access to a computer. I truly do adore Elijah's teachers and therapists and think they do an amazing job with him. And I actually take most of the responsibility for the drama that occurred this week. Dan and I should have provided everyone with Elijah's detailed medical history BEFORE school started. Anyway, I certainly hope no harm was done. I am just a mama who has poured my entire SOUL into loving and protecting my awesome little boy(s) and I only want the very best for him.

Enough about that!

Our Dan-less weekend has begun! Having him home next weekend is going to seem surreal. We won't know what to do with ourselves! I cannot fathom it after such a long spring/summer/fall of hardly getting to see him at all on the weekends.

Sammy has a tiny bit of a cold, which I am praying stays TINY. One of the things that makes me a tad nervous about having the boys alone overnight is Elijah's croup. The thought of dealing with that by myself makes me a little crazy. So that's something else I have been saying prayers for. NO CROUP!

That's about all for now. I'm trying to decide between a glass of wine and a bath or a movie. Hmmmm, decisions.

Will she ever be done talking about IEPs?

Based on some of the comments I received on my last post, I have to say a few tiny things. First of all, I got the vibe during the IEP meeting that a handful of people in the room thought Dan and I were slacker parents. Dan got the same feeling, so I wasn't alone. And now that I have had a conversation with Elijah's teacher, I know that our instincts were likely fairly accurate.

Also, I understand that it is required for teachers to compare each child to "typical children of the same age" in IEPs. What I did not understand was why it had to be stated quite so harshly, especially for a child with such a mottled medical past.

With that off my chest..

I both emailed and spoke with Elijah's teacher since my meltdown. I shared with her how extensive Elijah's medical history was and also that I thought some of the statements in his IEP were unnecessary due to his history. She had NO IDEA the extent of his history and thanked me more than once for providing the insight. She admitted that they got caught up in all of his many delays, compiled with lack of self-help, and didn't see the full picture.

She completely rewrote his IEP, which was extremely nice of her to do. And this really isn't what matters to me. It matters that the adults who care for him at school understand his history and the reason for his many delays. And now that they do, I feel much better. She told me that she has never had a student who has had so many surgeries and hospitalizations. I told her that we assumed there were a lot of children in the special education program with similar histories. So, it was good to clear that up!

I feel heard and I no longer feel judged or like people are believing me to be an inadequate parent. And I now know that Elijah is in very good hands. His teacher showed me that she genuinely cares about him and that brings me immense comfort.

IEP aftermath: tears

Last night, as I waited for my popcorn to finish popping in the microwave, I started thoroughly reading through Elijah's IEP report which I apparently should have done 48 hours previous to that. Within seconds I was crying.

Let me first say that we truly believe Elijah's teachers and therapists have his best interest in mind. I just don't think they understand the extent of what he has been through, and maybe that is something we should be making more clear to them.

I bolded the parts of the IEP report that caused my eyelids to suffer from major puffiness today..

"Elijah readily enters his classroom and greets teachers. This skill is not observed with peers at this time, even with prompts or assistance. Elijah does not appear bothered by peers but does not readily seek them out or attempt to converse with them. At the time, full support is needed to engage with peers and to sustain any back and forth play, as well as, to share materials with peers. Elijah is able to parallel play next to peers, and at times, will watch his peers play. Not a lot of imitation play has been observed to date. Children Elijah's age should be able to initiate, respond to, and maintain interactions with adults and peers without support for at least short periods of time. Elijah will engage in back and forth play with an adult and has been able to maintain a very short conversation with adults in the room. Conversations with peers has not been observed while at school, even with assistance. This is a skill children his age should be able to do."

"Elijah is showing enjoyment when he enters the classroom. He often needs adult assistance to find an activity to do once he arrives in the classroom. Elijah appears to need time to look at everything in the classroom, but often needs an adult prompt to really do something other than watching his peers. Given his age, one would expect that he should be able to complete this task independently. In addition, classroom staff are not currently observing a lot of functional use of play with common object/toys for a child his age without adult support. Elijah is often observed to play with doors on toys and roll objects in front of his eyes unless assisted by an adult. He is able to transition from activity to activity given extra time. It is not clear whether Elijah truly needs extra processing time with directions or is distracted by the movement of his peers, but it consistently takes him extra time to transition that is not related to his physical abilities. This is also observed with small group activities. Elijah often needs extra time or or prompts from an adult to complete table top activities, especially when there is more than one step involved. Elijah also needs frequent cues to use a louder voice volume during classroom activities, so that he can be heard. Elijah is beginning to show some independence with self care skills. He often needs prompting to try as he tends to wait for an adult to just help him with dressing/undressing. Physically he is able to take off and put on his own coat, and is beginning to take care of his pants (pulling up/down) when toiletting, but he consistently needs extra time to complete the tasks. Elijah is not yet fully toilet trained, however, he is in the process and is having some success at school with this task. Most children who are Elijah's age are independent with the self care tasks expected for school (toilet trained, put on/take off coat..)."

After reading through this, I have to think that whoever wrote this up just does not truly understand what our little boy has endured. If they did understand, they would not be expecting Elijah to be able to be on the same level as his peers.

As I wrote in an email to Elijah's teacher, Elijah is absolutely not going to be on the same level as his peers at this point. He didn't move for the first fourteen months of his life due to lack of energy. He didn't walk until he was three. He didn't talk until he was two-and-a-half. Because of his weak immune system and constant sickness, he spent the first 2+ years of his life around very few children. And because of all of the people who have hurt him (doctors and nurses), it takes him a very long time to form trusting relationships.

If I had read through this IEP report not ever having met Elijah or Dan or myself, I would not draw up a very positive picture in my head of who we are. This report draws a skewed picture of Elijah and I think it makes Dan and me seem like pretty slackerish parents.

Which brings me to the potty training issue. If Elijah is in kindergarten and he is still wearing diapers and has no medical reason to be wearing them, feel free to judge me then. But at the age of three and with his extensive medical history? Do not imply that we should have him potty trained. Thank you.

One comforting thing is that I received two separated emails from fellow heart moms following my original IEP post. They both shared that they have endured similar reports and emotions surrounding recent IEP meetings. We are not alone!

Wouldn't it be wonderful if there were a school for only CHD survivors?

IEP

Dan and I sat in on Elijah's IEP meeting yesterday afternoon. His teachers and therapists have completely changed his goals, which is actually a really great thing. It means he has exceeded all of his previously set goals, which mostly revolved around speech and gross motor.

One concern his teacher has is that since Elijah is so very smart, it just doesn't make sense that she has to tell him something two or three times to get him to follow a directive. She says he doesn't appear to understand, but how could he not? He understands everything else.

We deal with the same thing at home. It takes us saying his name a few times and then making eye contact and telling him what needs to be done in order for him to do it. Distraction and a busy brain are my guesses.

The new goals that have been set for Elijah mostly revolve around social issues. Honestly, I think it's great that his goals have changed so greatly since April. The fact that our biggest hurdle now revolves around social skills is wonderful! That means tons of progress has been made in the "important" areas.

But it still isn't fun to hear that your son has social issues. Elijah is soooo incredibly social with adults, but he has zero desire to be social with children. His teacher said that he will enter the classroom in the morning and immediately start looking for an adult to interact with. When directed toward other children, he isn't opposed to them but he doesn't seem particularly interested and he never initiates conversation or play with them. He would rather either be alone or hang out with a grown-up. This is an area they are really going to push him in, and I am very happy about that.

The only child he has ever had true interaction with is his little friend Paige from daycare, and he has known her for two years. It took him a really long time to get to the point where he willingly was a part of genuine interaction with her.

They really stressed the importance of catching up in this area, so they want him to start going to school five days a week instead of three. Dan and I feel fine with that, so we will start this on November 17th.

They also set some new goals within the realm of adaptive and functional skills. He has a hard time putting clothes on and taking them off, although he is getting much better with this. He still is not potty trained and honestly appears to not understand the concept still, both at school and at home. Thankfully, they willingly work with him in that area, too.

He does still go to speech while at school and he still has a physical therapist to help continue to build core strength. He can by no means keep up with the rest of his class and he tires easily. They really seem to look out for him and they are open to doing anything that will help him out. I brought up his gravitational insecurity issues and now his PT seems to have a much better understanding about how much to push (and not push) him.

His teacher told us yesterday that usually she reads through each child's paperwork once and that is all that is needed. She has read through Elijah's paperwork six times and still cannot fully figure him out. I wanted to tell her there may not be anything to figure out. He has been through a lot and he is just our awesomely unique little boy. I didn't say that, though, because it would have been followed by tears.

Anyway, we are truly thankful for the care and attention he receives while at school. It has been unbelievably positive for him in all areas.

Before we left the meeting, his teacher showed us a sheet of paper where she had tested Elijah on every letter, upper and lowercase, every number, every shape and every color. He had gotten every single thing correct. I looked at the paper like, Yeah? I think she expected us to gasp in disbelief, but we know how sharp his brain is. Who does she think gets to hear him talk about pentagons having five sides and blue and red making purple?

IEP

Still no sign of baby! My contractions aren't completely out of control, like I was positive they would be at this point. Hmmmm.



We were able to attend Elijah's IEP meeting this morning. His teachers and therapists had nothing but positive things to say about him. He has really thrived in the three months he has been in preschool. I am so happy I was able to give up some control and let him try it because it has done wonders for just about every area of his development.

(Look at our silly boy.)



Apparently he is "one of the more chatty ones" in the class. :) He does the same thing at school that he does at home and everywhere else: he constantly says "hi!" to people. Like, to the point where it is borderline annoying to people who don't know him. His teachers think it is something he does because he doesn't know what else to say and he wants to say SOMETHING. He knows that "hi" will always get a response back, so he says it 450 times in a row.

Next year he will be going to preschool three days a week (up from two) and he will be in an integrated class, which means part of his class will be non-IEP/special education students. This is very exciting because it will give him a broader peer spectrum, if that makes sense. Right now he is the most talkative kid in his class, so he doesn't have many peers to act as a model for him in that area. I also think being in an integrated class will help to push him in the gross motor area, as well.

I could not be more proud of the progress our amazing boy has made! A year ago he was crying through every therapy session, not talking and fighting us every time we got his walker out. Look at him now!

I will end with a few very cute Elijah sayings:

His teachers told us that toward the end of each preschool day, he says, "Home see Mommy!!" Awwwwww.

Last night when I put him to bed, he said, "Good night, Mom. Mom go downstairs?" I said, "Yeah, Mommy is going to go downstairs now." He said, "Mommy go downstairs and play?" I wonder if he imagined me going downstairs and playing with his barn and animals.

Lately he likes to say out of the blue, "Yo Mommy!"

We always sing songs before bed. Sometimes he will sing along with me and sometimes not. The other night he just listened and when I was done, he said, "Good job, Mom. Good singin', Mom." Thanks, sweetie.