A story I cannot NOT share

I had my first work-from-home day today in a really long time. Sammy played with his friends at daycare, Elijah had an "okay" day at school while I edited wedding photos. With the nicer weather, we are transitioning from pizza-movie Friday nights to picnic-popsicle Friday nights like we always do in the summer. So I brought the boys to the store to pick out popsicles and to grab a few other things.

I enlisted the boys to help me bag groceries. I tried to help Sammy open a paper bag, but he wouldn't tolerate it. He HAD to do it himself. I turned around to see him flopping on the floor, wrestling with that stupid bag and screaming. What the..?! "Sammy! Just let me help you!" "NOOO! Do NOT help me!" "Fine!" I turned back around and bagged the groceries as fast as my arms would allow.

Then I noticed that a woman was trying to walk past the flailing Sam, but he was directly in her way. I gently grabbed his arm and super calmly said, "Come here, Sammy, you're in the way, kiddo." He threw his paper bag and started screaming even louder. "NO! I am NOT moving! Stop GRABBING me so HARD!" The woman was growing impatient (don't blame her), so I picked him up and moved him myself. He went over to the cart and started PUNCHING the cart! Then Elijah picked up on the negative vibe and yelled out "POOPY BUTT!" a handful of times. Oh my goodness! What is happening?!

I had one of those public parenting moments when I knew everyone must be thinking I was a horrible mother with horribly-behaved children. I literally just starting throwing the groceries into the cart and told the boys to hop up and hold onto the sides. In the car I let them know that those delicious-looking popsicles they had picked out? They were not going to be eaten tonight. We'd still do a picnic, but boys who behave like that do not get popsicle treats.

Commence Sammy screaming SO HARD that my ears literally started aching. I have never in my life heard him, or anyone for that matter, scream so hard and loud. And apparently the screaming wasn't enough because he started flailing and thrashing his body around so violently that I began to worry about shaken baby syndrome or a brain injury. I wanted to roll down the windows to give my and Elijah's ears a little relief, but...we were at a stop light. I didn't want to share that joyous sound with so many other people.

When we got home I told Sammy to go inside. He wrapped his seat belt around himself so it would be hard for me to lift him up. He is strong! I had to use all my strength to get him out of the car and carry him inside as he flopped around like a crazy fish. I gave him a swat on his bottom and he screamed louder. Repeat three times. He ran back out to the hot car and wouldn't come out. Sweat was streaming down his head and face, so I grabbed him out again. I locked the car doors, set him on the driveway and went inside. I knew he wouldn't leave the yard, but kept a quiet eye on him. He screamed out there with Cowwy in his arms for 15 minutes.

He came back in with his head down and much calmer. We had a talk about what had happened in the store and the car and everywhere else along the way. He is SO strong-willed and independent. Ugh, these boys! They are going to kill me! Some day this story will be hilarious. Today, not funny. Tiring, bewildering, exhausting, embarrassing...yes, all of that.

And here's the best line of all, after Sammy had calmed but was still upset. "Mommy, I'm not going to live with you anymore. Me and my BAD FRIEND are moving to Russia!"

There you go. My four-year-old is already planning his escape with a BAD FRIEND.

Dan flies home from DC tomorrow night. I can't wait! We're having Sammy's birthday party at the dropzone on Sunday, so I'll be getting ready for that tomorrow. And next week will be nuts, as the little boys and I prepare for a road trip to the east coast. A week from today we'll be rolling into Louisville, Kentucky to spend a few nights with friends. I have WAY too many things to accomplish before then!

Have a great weekend...I hope yours started better than ours!

Potty revelation

Ever since Elijah was diagnosed as having a Nonverbal Learning Disorder, we have been doing our best to learn to think the way he does. It's not easy! He processes information in such a unique (to us) way, and it has been really difficult for me to understand that I need to change the way I interact with him. I find myself doing the same things I've always done, and getting the same results I've always gotten.

Over the past week or so, I have been thinking a lot about potty training and how we are basically in the same spot with E that we were two or even three years ago. I've felt in my gut that this just HAS to be related to the NLD. Something isn't connecting. The ONLY time Elijah uses the toilet is when we ask/tell him to. Before this week, he literally never went on his own, which has resulted in soooo many accidents and tears, and so much frustration over the years. Oh you guys, you have no idea how much poop and pee Dan and I have screamed and cried over. It's been such a grueling and long road in that department.

I had the thought a few days ago that first and foremost we need to get him to LISTEN TO HIS BODY before anything else. For two days, I set the timer on our microwave every 10 minutes. When the timer went off, I'd tell him to ask his body, "Do you need to pee or poop?" We even came up with a fun gravelly voice that his body uses to respond back to him. "No Elijah, I do not have to go pee or poop right now." A couple times a day, his body would actually say, "Yes! I do have to go!" and he'd run off to the bathroom.

For the past few days, instead of using the timer I've just been asking him about every 20-30 minutes what his body is telling him. He has continued to use the toilet ON HIS OWN when his body tells him it has to go! This is incredible! A couple times he has even done the body check on his own, without my prompting, followed by a trip to the bathroom. And get this! Today after school he told me that he did a body check during school and his body told him he had to pee. He raised his hand and asked his teacher if he could go to the bathroom. She said no. Darn. He asked again and she let him go. MAJOR SUCCESS! All along we've been dictating when he uses the bathroom, not teaching him that he needs to listen to his body first. For most people this is something that comes naturally, but Elijah needed for us to tell him what step 1 was. COMMUNICATE WITH YOUR BODY.

This morning we were in a hurry to get out the door, so without thinking I told Elijah that he needed to go potty QUICKLY. He started crying and yelling, "BUT I DON'T HAVE TO!" and flopping around on the floor. This is a typical scenario in our home that has gone down about 3,000 times over the years. We fight over using the bathroom many times/day. I started doing what I normally do. I gave him a choice: go potty or sit in a chair by himself until he's ready to go. I started to walk into the bathroom when I heard him say between screams, "Mommy, snuggle me!" I stopped, turned around and knelt down and gave him a huge, hard hug. Once he calmed down I told him I didn't blame him for being frustrated and confused! For the past few days I'd been telling him to go to the bathroom when his body felt like it had to go. And now I was telling him to go when his body didn't need to! I explained to him that there are two times that we go potty. When we need to and when we know we'll be away from the house for a while. I think he will just need to hear these two rules spoken to him a number of times, and then he'll be able to categorize Potty Rule 1 and Potty Rule 2.

I've also taken a different approach to his "okay" and "bad" days at school. Instead of expressing immediate disappointment and removing privileges like I used to, I'll now sit down with him and calmly ask what his teacher didn't like about his day. He is MUCH more willing to tell me details when steam isn't pouring out of my ears. "Some other kids were telling me to do blurt-outs and I did!" Having specific details, we can sit and talk about strategies to make things better the next day. "If your friends tell you to do that again, tell them 'no' and then raise your hand and ask for help."

Another thing I've started doing is instead of freaking out or giving threats when I hear potty talk or bad words, I will offer an immediate alternative. So far it's working great! Tonight I heard him get frustrated and say, "STUPID!" I said, "No, that's icky. How about 'fiddlesticks!'" and he happily repeated it. As the doctor told us and as I've been reading, we need to repeat positive things to him CONSTANTLY until they become ingrained. I've also been rewarding him for positive responses/reactions with computer/iPad time or candy or playtime/coloring/legos or anything he enjoys.

Slowly this is all making more sense. It feels good to grasp even a tiny bit more of it each day! I've started reading a book about NLD that is super helpful. I'd love it if everyone who cared about/for Elijah read it, but instead I'll just offer up a synopsis when I'm done. :) Today was a MUCH better day than yesterday. I think God knew I needed a day of progress and positivity.

The boys are in bed, so it's relax-time for me! Have a great evening!

First grade track and field day!

Sammy and I spent the day with Elijah at school for Track and Field Day. For the first two hours, it was FUN! It was great to see Elijah out there with the rest of the kids, trying his absolute best. He needed a little help and struggled a bit, but he TRIED! I was proud. On the first "hippity hop" race, he got about halfway before one of the gym teachers carried him the rest of the way.

The second race was a relay, so he didn't have as far to go. He was very much behind everyone else, but he finished!

Sammy even got to run in a race! He was thrilled about it. He got a "participation" ribbon and was telling Elijah's friends that he won first place. "I'm SO speedy! And strong!" :)

It was sunny and HOT! The boys got a little too much sun, despite the layers of sunscreen I slathered on them. I was so busy taking care of them and worrying about them becoming dehydrated that I forgot to put sunscreen on myself. Ouch!

Toward the end of the event, all of the kids were just plain tired. I love this photo of Elijah in the center and everyone sprawled out and so exhausted. He has some really sweet kids in his class! There are a handful of boys I could actually say I adore! They were so kind to and patient with Elijah. They approached him and asked him questions and tried to play silly games with him. Sometimes he responded appropriately and sometimes he didn't. He has improved SO MUCH in this area. Sammy was really comfortable around E's pals and asked them all sorts of things and told them very random things about our family. "My mom likes to take baths at night!"

Tug-of-war was fun. Elijah got a kick out of it, although this was right around the time when I saw the switch flip in him. He went from being happy, cooperative Elijah to I-want-to-make-everyone-mad Elijah. I was his first victim. I saw it coming. He sat down next to me, dug his fingernails into my arm and said under his breath, "I'll smack you in the face." Yeah. :( I couldn't discipline him like I would have at home, so the only thing I could think to do was walk away and sit somewhere else. I saw him cry big dramatic tears as he screamed, "My mommy LEFT ME!" Oh please. A few minutes later, he came over and said sorry and asked me to sit by him. Then I started noticing that he was pushing his friends just a little too hard and grabbing Sammy's arm and yanking him around. I pulled him aside and spoke to him firmly. His response was a screaming, "I DON'T WANT TO SIT DOWN." Ugh.

Sammy had a really rough day, too, so I feel depleted and disheartened tonight. These boys are so tough right now. They are both in tough stages, and feed off one another so negatively. I have been doing EVERYTHING possible to get them good sleep at night, but nothing seems to work.

Sammy was whiny from the moment he woke up this morning. When we got to E's school, he wanted to do absolutely everything his own way. "No, Sammy, you cannot walk through that race! You'll get trampled!" "BUT I WANT TO." Ugh!

At lunch the first graders went into their classroom to eat. Sammy and I stayed outside with some other parents/families to eat our lunch. After I opened Sam's cheese wrapper for him, he FREAKED OUT. "DON'T OPEN MY CHEESE WRAPPER! I WANT TO DO IT!" "Ok, well it's done, Sam, so you'll need to get over it." "GO BACK HOME AND GET ME A NEW ONE SO I CAN DO IT MYSELF!" "Uh no, that's not going to happen." He whined and moaned and cried about that for ONE HOUR. I'm not joking. When we got home, he didn't like something I had said or done so he ran outside in circles in hopes of not being caught. The whole time he was SCREAMING as if I was going to hurt him. "DON'T TOUCH ME! I'M NOT GOING INSIDE!" I finally grabbed him, flailing, hitting and kicking my body, and brought him inside. I carried him to my room and put him in my bed and hugged him until he stopped.

When I told him what we were having for dinner tonight, he told me (as usual) that he'd rather have something else.

If there was ever a question that we might have another child, today confirmed an absolute NO for me.

On a totally different note, Elijah surprisingly had a great afternoon at therapy (PT/OT). And Sammy was a perfect angel in the waiting room. ??? E's wonderful PT chatted with me for a few minutes about the neuropsychologist's report. She has been a PT for many many years, keep in mind. Her words: "That was the best neuropsych report I have EVER read." Based on his report, she requested more time with E from our insurance company and it was granted! She has all kinds of new things to work with Elijah on based on Dr. M's recommendations.

The boys are finally quiet. I am going to go outside and read my new book on Nonverbal Learning Disorders. Have a great rest of your week! Thank you for the white board/chalk board recommendations!

Golden!

So my new expensive camera happens to be....um, AWESOME. Dan and I have been ooo-ing and aaah-ing over the photos it has been capturing over the past few days.

Dan assisted me with my Friday wedding while the boys spent the night with their Auntie Carolyn and cousins. Everything went great! My friend's wedding was beautiful and we captured some great memories. The boys had a great time with their awesome auntie and cousins. We got home late, went straight to bed and I got up bright and early for another day of wedding-ness.

I was SO TIRED by the end of yesterday. It was a 13-hour day! My lower back was killing me and I had shooting pains in my heels. I am glad it's all done and I'm excited about editing the photos I captured. Weddings can be so stressful, but they are so rewarding. I love my job!

Dan leaves early in the morning (3am!) to head to DC for six days. We are going to miss him this week. We have a busy week planned, as usual, so I'm sure it'll go quickly.

Next week, June 4th, is Sammy's GOLDEN birthday! I know I've asked you for cards/letters/love for Elijah so much in the past, but if it is on your heart, would you mind sending a special letter to our Sammy for his golden birthday? It would mean so much to him and to us! If you need a mailing address, send me an email at mmporta at gmail dot com. So often it is Elijah receiving attention during surgeries/hospitalizations/special situations...so I would just LOVE for Sammy to feel super-special for once! No pressure...only if it's on your heart.

Good night! Thank you for checking in! Have a great rest of your Memorial Day weekend.

Declaring FUN TIMES!

I don't write about many fun things on this blog these days. This year has been HEAVY in so many ways. I want to bring fun back! I declare today until July 8th (E's ear surgery date) FUN TIMES! I got home from work tonight and got my camera out. It's so rare that I take fun pics of the boys anymore, so I decided to change that. Check this out! Elijah can now ride a bike with training wheels! Uhhm, maybe don't tell Sammy since this is technically his bike. Sshhh.

It's a good thing I had the urge to get my camera out because I otherwise may not have noticed that it was BROKEN! A day before shooting a wedding, followed by another wedding on Saturday! Ugh. So tonight I scurried and found an upgrade at a nearby Best Buy. I'll pick it up in the morning, charge the batteries, learn the camera and head out to photograph my friend's wedding! Thankfully Dan's sister agreed to watch the boys tomorrow so that Dan can come along with me. This gives me an immense sense of peace. There is no one in the world who makes me feel more peaceful than Dan, so having him at my side eliminates anxiety. Please pray that our boys do well away from home tomorrow night (they've never stayed overnight with this awesome auntie before) and that Dan and I take some great wedding photos!

The boys are donning new summer shirts that they LOVE. They were both so excited to wear them today.

Thanks for checking in on our cutie pies! I hope you all have a wonderful weekend!

(Isn't this little Sammy ADORABLE? Oh my goodness, I love him soooo much!)

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.

Just one of those days.

Oye, today was rough. Elijah had a "bad" day at school, which wasn't super surprising. Last night before midnight I heard him repeatedly kicking the wall next to his bed. I opened his bedroom door. He looked up at me and said, "HI, MOM!" I'm pretty sure he went back to sleep, but he was up again ridiculously early and he looked like he had been tortured when we got him out of bed this morning. Right away, I put calls into his sleep specialist and his developmental ped regarding his sleep meds. His sleep doctor is notorious for not getting back to me for literally WEEKS, hence the reason for the back-up call with the ped. He had mentioned to us that he was very familiar with the med Elijah is taking, so it's always good to have two experts on top of things.

I received a call back from the developmental ped's nurse almost immediately. Impressive! Isn't it funny how doctors operate so differently? The nurse had spoken with Dr. M regarding my concerns about Elijah and his response was: the med he is taking does NOT interrupt sleep. If his sleep is being disturbed beyond the norm, it is not due to the medication. In fact, he suggested upping the dose by just a tiny bit. We did that tonight, but won't know its effect for a week or so.

I was expecting a call from the neuropsychologist today, but it never came. We were supposed to discuss E's options at school and I also have a small list of other questions for him. Do we continue to discipline Elijah in the same way? Could he potentially have a semi-visual view of the world around him? What are the accommodations we need to advocate for to have in his classroom next year?

Everything seemed off the charts today...emotions, behavior, feeling overwhelmed and anxious.. Praying for a much better Tuesday and PEACE!

Also wishing you all a wonderful week! Thanks for peeking in. xo

Hand it over

The boys and I made it to the dropzone last night for our first time this season. They were SO EXCITED about going and had a blast! The fresh, open air, the attention (they are always given MUCH love by our amazing skydiving pals), the playground, our trailer that is totally stocked with toys.. The dz is such a novel place for them and they adore their time there...every time.

I told Elijah last year that he probably wouldn't fit into our toy car this year. Well, he squished himself in! He made it work. We're looking into turning it into a convertible. He loves "driving" this car around the perimeter of the hangar....over and over and over, and usually with Sammy sitting in the "trunk." Sammy is closing the door of our trailer in the below pic. The boys call this our "second home." I can only imagine what Elijah's teachers and friends at school must think when he tells him about our second home having wheels, in a trailer park. :) 

Being so close in proximity to the boys' beds last night, I was able to accurately determine what time Elijah was awake for the day. That would be 3:10am! I have a feeling this has been going on for a few weeks. I'll put a call into his development ped tomorrow. We are not entirely certain that the sleep meds are helping any longer, so I would like to discuss other options.  He was a very very tired boy all day today.

I packed the boys into the car fairly early this morning and headed to church, unshowered and all. I refuse to let our church attendance fall to the wayside this summer, despite our dropzone-ing, fun and busy-ness. I was glad I made the effort because our amazing Pastor Londa put a message into my head that I absolutely needed today. The stress, worry and fear I've been feeling lately NEEDS TO GO. It's not mine to hold, and I need to hand it all over. I've felt much better today. 

Yesterday was a different story. I sat on the hard cement at a playground for over an hour, watching the boys run around while my wonderful mother-in-law's arm was wrapped around me. I had a near panic attack as I walked out of the gym with each of the boys' hands in mine. It hit me hard and very suddenly. I hadn't had that feeling in YEARS. Dan's incredible mother came to my rescue and helped talk me through my feelings. I felt much better after a dose of her love. The next few weeks are filled with...so much! Work, work, work, work, time spent apart from each other...and my mind has a difficult time thinking about anything else. But I just have to GIVE IT TO HIM!

On a much lighter note, the weather was beautiful today! Aahhhh.. finally! And I'm not sure I've mentioned it here yet, but the little boys and I will be departing on a 2-week road trip on June 6th, the day after Elijah's last day of first grade. We will spend five nights in Louisville with our incredible heart friend Evan and his family. Then we will head to Charlotte for another week where we will spend time with my dad and stepmom. We are EXCITED! My cousin Trevor (the Car Doctor, as E and S call him) just did some work on my old but trusty car and will do a final peek before we leave. We feel ready!

This coming week is going to be so absolutely and totally nuts, but...I'm handing everything to Jesus! He can take it all on and lead me. I'm taking it day by day...hour by hour. Look for the blessings!

Thanks for peeking in! xo

Expressing ourselves

I don't think there has ever been a week when I have done more thinking. Thinking is exhausting! I am mentally and emotionally drained. I have been thinking while I sleep, drive, shower, work, exercise and "relax." Certain things about Elijah keep making more sense, and I've also had a few hiccups.

I have tested him a lot in the past few days because I just KNOW that he does retain visual images on some level. We haven't been to the dropzone since August or September of last year. So this morning I asked him, "What color is the couch in our dropzone trailer?" He looked up at the ceiling as though he was picturing it and confidently said, "GREEN!" Correct. "What color is the airplane at the dropzone?" "Blue and white!" Correct. "Tell me what you picture when you think of the dropzone." "Daddy's locker. It's blue and it's number 34. And the bowling balls in the hangar. And my little red car. And the fun toys in our trailer, like the silly bowl that talks and has broccoli in it." Ok, unless he literally has spoken all of that to himself repeatedly, he just HAS to have some visual recollection, right? Did we somehow teach him to do that? Or is it just a gift from God that he is able to do this?

This week I have also been thinking about myself and how I remember/envision things. I have never given conscious thought to this topic before! I am also very word driven. Written words are my strength. If I want to pull a thought out of my head, I write. Without writing, I can't always make sense of what is in my head (hence having two blogs that I write on often!). If I try to speak a complicated thought without rehearsing it first? Forget it. It's clumsy and it never comes out accurately. I also express myself by creating. Photography, painting and design are all ways of communicating for me. But written words are my strong suit. We all have different ways of communicating effectively, and I think it is important that we know what works best for ourselves. As children, our parents learn these things about us, advocate and explain it to educators and caregivers. As adults, we learn to advocate for ourselves and accommodate as needed.

Dan and I will continue to advocate for Elijah. For Sammy, too, when necessary, but for now Elijah needs it. I feel a storm brewing as we anticipate changes in educators, labels and understanding of diagnoses, etc. Dan and I are educating ourselves as much as possible in order to help Elijah (and Sammy) receive the best educational and worldly experiences possible!

A few thoughts and then I'm going to "relax" before bed ("relax" = think some more). :)

- Given the scope of Elijah's challenges that we learned about this week, I am AMAZED that he ever has even a single "great" day at school. This week has totally changed my perspective about his behavior. "Okay" is the new "great," as far as I'm concerned.

- A friend sent me a link to a very enlightening blog post, written by an adult with NLD. It is sooo interesting. Take a peek if you have a moment! http://onefootonthespectrum.wordpress.com/2010/06/02/guest-blog-2-living-with-nld-as-an-adult/

Thanks for checking in! Have a great weekend!

Ruminations on NLD

Today was a day of major processing. Thankfully I had the day off work, so I was able to do that without interruption. I began reading websites on the topic of Nonverbal Learning Disorder/Disability while on the treadmill at the gym. WOW. There is so much information to absorb! First and foremost, I am extremely grateful to have this new knowledge but it definitely is overwhelming in these initial stages. I stepped into a cozy, hot shower in the locker room and sobbed like a baby. I didn't even care who was listening. The tears were ready. They expressed relief and grief, happiness and sadness.

Here is what I have processed today..

By being hyper-aware of Elijah's delays and needs early on (before he was 5 months old) and getting him as much help as possible through weekly therapies (PT/OT/speech), medical intervention and the school system, we have inadvertently tackled some challenges way ahead of time with his NLD (nonverbal learning disorder). As I read through website after website on this disorder, every single one describes Elijah as if they know him personally. There are a few characteristics that most NLD kids display at his age, however, that we have managed to avoid by teaching him certain ways of talking/acting/behaving. For example, most NLD kids speak in fairly monotone voices, without much inflection and without using a large range of facial expressions. One of the things we have done with Elijah since he was a baby is to over-exaggerate our inflections and expressions. He learned those behaviors (as well as the associated meanings), and currently speaks with much inflection and he uses many different expressions. Since he was a baby, I have always played the "facial expressions" game with him. "Show me a MAD FACE! Now show me a SURPRISED FACE!" Also, we used sign language with him early on, which helped him to have some reliance on visuals which is really important for him. Now that we are enlightened, we will do these sorts of things with much more regularity. We will explain everything in an attempt to teach him how to generalize and learn cause-effect and understand sarcasm and not take everything literally. This will be an entirely new lifestyle for us, and we are ready to tackle it. It excites me to think up new ways to help him out!

Just in the past two days, Dan and I have immensely renewed patience. And a little bit of guilt. We have punished Elijah for YEARS for things he has had no control over. Ugh. This is a tough one to swallow. Thankfully, he is 7 and his doctor reassured us that we have not caused any damage. We know his "language" now, and we are starting fresh from this point. Dan and I have been implementing new ways of delivering information to Elijah and it has been super helpful. Instead of my usual way-too-wordy lecture, I said to him tonight as he was riding his bike in the driveway, "Elijah! STEP 1! Go inside and do your homework. STEP 2! Computer time." He IMMEDIATELY obeyed, with no whining or complaining. We have also been using the iPad app I mentioned yesterday for bedtime and morning routines. Is it a coincidence that he used the bathroom TWICE tonight completely on his own?! (This NEVER happens. Seriously. Nevvvver.)

I have not received an initial super-supportive response to all of this new info from all parties at Elijah's school, which is disheartening. His school is not familiar with NLD, which is totally understandable, but I wish we would have received the "we will do what we can to make sure Elijah gets the support he needs" response that I was hoping for. From what I understand, even though Elijah was given a diagnosis of ASD by a medical professional, that may not apply in the school system. Also, I was told that NLD is a "diagnosis that is not recognized," which seems totally ludicrous. More to come on all of this, as I'm sure this story will quickly unfold. E's school social worker wants to hold another IEP meeting with the whole team before the end of the year to address all of this new information. I am very much in support of this and grateful she suggested it.

I also gave a copy of Dr. M's report to E's PT/OT tonight. His PT has worked with him since he was a tiny babe, so I appreciate her level of interest, concern, knowledge and compassion as well as her commitment to read through 18 pages of results without complaint. She assured me she would read through the entire report and give me her thoughts next week. Dan and I are finding that we so greatly appreciate professionals who genuinely appreciate our situation and we lean on these people. We have sent up major prayers for his 2nd grade school year and that we become connected with people who listen and genuinely care. This will make or break second grade!

One last thing and then I'll stop, I promise! One of the things I read on an NLD site today is how mothers of NLD kids are often perceived as being super overly protective. Uhhhh, YES! ME! I've been labeled as "overly protective" by family members and friends over the years, and I've always felt defensive. I have always fully understood Elijah's capabilities and limitations and I find myself often thinking or saying (or both), "But he can't DO that!" Not because I have ever wanted to limit him! Goodness, I am an adventurer myself and I wish for the same qualities in my children. I just happen to know that Elijah CANNOT DO CERTAIN THINGS. As his mother, I know what he is and is not capable of and I'm not afraid to protect him. Now I know why and that helps. It also helps to know that I haven't been unwarranted in my over-protectedness. Here is a quote from the following website: http://www.ldonline.org/article/6114/
"The myth of the 'overprotective mother' needs to be dismissed; parents and professionals must both assume a 'protective' and helpful role with the child with NLD. Dr. Rourke states, 'Although sensitive caregivers are often accused of 'overprotection', it is clear that they may be the only ones who have an appreciation for the child's vulnerability and lack of appropriate skill development.' Care and discretion need to be taken to shield the child from teasing, persecution, and other sources of anxiety. Independence should be introduced gradually, in controlled, non-threatening situations. The more completely those around her understand this child and her particular strengths and weaknesses, the better prepared they will be to promote attitudes of personal independence. Never leave this child to her own devices in new activities or situations which lack sufficient structure."

That's all for today. Whew, that was a lot! Sorry if I bored you. Thanks for checking in and have a WONDERFUL rest of your week! We love all of you..xo

Huge puzzle pieces clicking into place!

For the better part of the past year, we have been waiting for the last of the puzzle pieces to click into place. I have felt so strongly in my heart that big stones were left unturned and that there was so much more to discover about Elijah. Things have become so complicated with him in the past few months and years. Sleep and attention and toileting and behavior and repetitious behaviors and social difficulties and outbursts and frustration and anxiety and tantrums have all compiled on top of one another. All of the above are affected by and also affect all of the other above challenges. I've felt like we have been slooooowly clicking puzzle pieces into place, learning more about how our sweet oldest boy operates.

After yesterday's appointment with E's neuropsychologist, I feel like we have gotten as close as possible to completing the Elijah Puzzle. Dan and I sat with Dr. M and listened to an hour and a half's worth of results/findings/thoughts/speculations/recommendations. We walked away feeling enlightened and excited. We have answers!

Dr. M began by talking about the things we already know. Elijah has an extensive medical history. Medical incidents/diagnoses stacked upon hospitalizations stacked upon health issues and intubations and anesthesia and a lack of proper blood flow/oxygen and significantly delayed development...his medical history in itself is a lot to comprehend. When all of the above is present, particularly a lack of blood flow and oxygenation, the brain can be affected. The main guess at this point is that certain pathways in Elijah's brain were damaged due to any or all of the above, which caused his brain to create new pathways or ways of being wired. We'll call them Elijah-ways. In certain ways, Elijah's brain does not process information like most brains do. Certain tasks that come easily for his classmates/peers are VERY challenging for him.

First of all, Dr. M totally and completely ruled out ADD, ADHD and OCD. Interesting! But it will all make sense in a minute.

Elijah received three new diagnoses, all of which we believe will help him immensely in the school system and at home and in the world, as well. We have known since he was a baby that Elijah has displayed "tendencies" toward autism but given his desire to engage others and to be social with others, his doctors and educators have always shied away from this label. Dr. M thought that based on the description of his struggles in the social/cognitive realm and based on the information I provided at our initial consultation, Elijah is indeed on "the spectrum." He sees it more as a way to focus on appropriate intervention for him than anything else. He can receive a more appropriate label at school and get help in many other areas than just deaf and hard of hearing. Dr. M explained to us that he has classified Elijah in the highest functioning category of ASD. Most likely, he was not genetically predisposed to have ASD, but came by it through other means (extensive medical).

His second diagnosis is called Motor Dysgraphia and this indicates that Elijah has significantly impaired perceptual-motor difficulties and visual-motor integration due to motor delays. If somebody asks him to write five perfectly-formed sentences in five minutes, he physically would not be able to complete the task. He has always had significantly delayed motor skills. He has come SO FAR, but this still really limits his abilities which is why the doctor wanted to give it a label. It is significant enough that it needs to be noted in medical terms.

The third diagnosis was the most interesting and for Dan and me, the most important piece of the puzzle thus far in Elijah's life. This is the piece we've been waiting to click into place for YEARS. He has what is called Nonverbal Learning Disability, which means that he is unable to process information that enters his brain in any other way than verbally or through written words. Pictures and visuals mean NOTHING to him. They confuse him and frustrate him. He can look at a picture of a person putting a finger to his mouth and not have any idea that that means he should quiet down. In fact, he becomes frustrated about not understanding what it means and acts out in response.

In order for Elijah to understand a concept, he needs to hear it verbally (or see it written...or both) in very literal terms. He cannot connect dots or generalize or perceive body language/social cues or draw a picture of a generalized concept. He scored "superior" in the areas of auditory attention and verbal fluency during his recent testing, but was "borderline impaired" on much of the visual portions. At times, we have been speaking a language to Elijah that he does not understand.

This changes so much! And this explains the OCD/ADD characteristics we've seen recently. These qualities have most likely been a result of anxieties surrounding being misunderstood/frustrated. This new amazing doctor gave us many suggestions and resources and iPad apps to help us all out. Having the new knowledge that E needs verbal and written step-by-step instructions, we are viewing so many issues in a totally different way, such as using the toilet, getting ready for school and completing homework. This morning we had a new app set up for him that had his morning routine spelled out in words, as well as verbally spoken to him. He was able to cross off each task as he completed it. HE LOVED IT! It was genuinely fun for him. We watched him use the toilet on his own for one of the first times ever.

This new news sheds light on Elijah's social struggles, as well. He does not understand body language or other social cues appropriately, so he struggles when relating to his peers. This causes anxiety, which makes everything else difficult for him. We are hoping that if we can tackle some of Elijah's "learning" challenges in a proactive way, his anxiety will be lessened and his confidence and sleep will improve.

This is a lot of information to absorb and I literally will read the doctor's 18-page report daily until I "get" it all. Dan and I are still in the processing stages, but I wanted to get these initial thoughts out. Thanks for reading this entire post! Phew! :) We would appreciate prayers for proper direction on how to parent/teach our oldest boy. THANK YOU! More to come..

The BEST Mother's Day.

Happy Mother's Day to all of you amazing mamas! Today was an incredible day for us. My boys let me sleep in and they woke me with breakfast in bed, super thoughtful gifts and handmade cards and a TON of love and hugs. Sammy told me about 100 times today, "Mommy, you're so LOVELY and PRETTY and I love you SOOOO much!" I feel like the luckiest mother on the entire planet. I love my boys!

Sammy had been telling Dan for weeks that he wanted to get me "jewels" for Mother's Day (smart kid). Dan compromised and picked out a really pretty gift-shop ring while he was in DC last week, so that was my "jewel" from Sam (I love it...I will never take it off). He also requested flowers for me. Another wise choice. I think Sammy is going to be a lot like his Daddy and VERY thoughtful in the gift-giving department. Elijah wanted to get me a vase and a cup, which were perfect picks, as well! Dan got me a gift card to a spa...uhh, totally perfect after the past few weeks. I'll hopefully get to use it this week!

I did a lot of thinking about moms today. My mom, my stepmom, my mother-in-law, myself, my sisters and sisters-in-law, my friends, the moms I see at the mall and the park. Moms are amazing! Moms are selfless. Moms have the toughest jobs, but the most rewarding, too. Moms are loved and cherished beyond anything words could ever say. Moms are the most important people. I pray every day that I can be the best possible mother to these two amazing boys God gave to me. Sometimes I lose my cool (uh, daily) and I don't always serve them vegetables. I just pray that they both always know how much I love them. My two prayers that I pray many many times every day (and often in the middle of the night) are: 1. that they walk with Jesus all the days of their lives and 2. that they always know that they are truly loved and accepted by Dan and me.

Thank you for being a part of our lives, no matter how big or small. Praying for blessings for all of you this week!

Daddy is home!

We are so happy to have Dan back home! We picked him up from the airport tonight and the boys totally lavished love upon him. "I missed you, Daddy!" "I love you soooo much, Daddy!" "Please snuggle with me, Daddy!" "Hold my hand, Daddy!" I think this might be my new favorite photo.

Sammy and I got to spend some quality time together today, which was awesome. I love that sweet, sassy, silly boy. Elijah had a great day! He started off the morning by getting dressed, using the bathroom and brushing his hair and teeth ALL ON HIS OWN. Without any prompting or grumbling. I didn't quite know what was going on, but I loved it! Then he asked me to give him a spelling quiz (he has a spelling test at school every Friday).

And then he offered to clean the kitchen floors. Uhh, what the heck?!

And he had a GREAT day at school! His first great day since early last week!

I'm off to cuddle with my hubby! Thanks for checking in and have a wonderful weekend!

Mama business = serious business

Did you hear that? I just sighed a HUGE sigh of relief. I'm done working in Cannon Falls for the week, so the scrambling is done for now. Dan gets home tomorrow night and I can't wait to squeeze him! It has been a totally crazy week for the little boys and me. This single mom business is no joke! I have a new, great respect for single moms. They are my heroes!!!

My limited patience and the boys' total craziness have been feeding off one another all week. Things that are usually a piece of cake have suddenly become chaotic. I don't know if it's chance or Dan's absence or both. Putting the boys to bed the past few nights has been filled with stress, which has never been an issue for us. This morning on the way to daycare, Sammy realized he had forgotten his sunglasses. It was raining, so I assured him he wouldn't miss them. The entire ride to daycare involved screaming (like, ear-clutching SCREAMING), punching the door, punching the air toward me and yelling potty words that I've never heard come from his mouth. Three of the past six school days for Elijah have been "bad" and the other three were "ok." Elijah has reverted to waking up at 3:00-4:00am, which I don't get. He's also been having a hard time falling asleep at night, which isn't like him at all. I'm praying all of this is just a result of a major change in family dynamic/routine and that it'll go back to normal...tomorrow.

Tonight there was supposed to be a carnival at Elijah's school and we were all really looking forward to it. There were going to be games, a raffle, yummy food, friends, etc. As Elijah and I sat in the car outside daycare while picking Sammy up (torrential rains had swept in, so I was trying to wait it out), I received a recorded call from the school. The carnival was canceled due to inclement weather. Oh man, I knew Elijah was going to have a really tough time with that news. I gently shared it with him and tears immediately squirted out of his eyes. I mean, literally, they flew from his eyes horizontally there was so much pressure and sadness. It broke my heart. I hate seeing my boys genuinely sad! When I got back into the car with Sammy, both of us TOTALLY saturated from the rain, I told the boys we could replace carnival fun with another kind of fun. We'd move pizza-movie night up a night! The boys loved that idea and I actually saw a smile on Elijah's tear-stained face. "Thanks, Mom! That made me feel happy again." It sounds like they'll try again with the carnival next week!

We are so excited to see Dan and to hear about his adventures! The boys and I have missed him so much and we're looking forward to a nice, relaxing weekend together. Next week = a follow-up appointment with E's awesome neuropsychologist, more work in Cannon Falls, Dan's and my 8-year anniversary, possible skydiving for Dan and hopefully more rest, normalcy and happiness for all of us!

Thanks for peeking in! Happy early Mother's Day to all of you wonderful mamas!

Mishap Monday

I don't have Dan to talk to in the evenings after the boys are in bed, so I feel compelled to sign on and write! Sammy and I spent a day together while Elijah was at school (it was an "ok" day today...I'll take it). I rushed to get some photos edited this morning so we could stop by the post office on our way to the gym. Sammy and I walked up to the counter at the P.O. and...oh no. I realized I had left my purse at home. I loaded Sam back into the car and got into the driver's seat. Uhh, where are my keys?! Seriously, I...the most methodical OCD person when it comes to things I should be keeping track of...was suddenly without a purse AND keys?! I thought I was losing my mind! I quickly ran back into the P.O. and asked if anyone had seen keys lying around. I got a few strange/worried glances, as they had all just witnessed my missing purse saga. I went back to the car and Sammy was holding up my keys in front of his face. "Mommy! You told me to hold these!" Oh boy. I have relived the scene a hundred times today and I have no recollection of handing Sam my keys. The rest of the day took place without dementia precursors, so I'm chalking that strange 10 minutes up to a tired mama brain.

I bet you didn't know that babyporta.com was your source for field trip follies and tired mama mishaps! So happy to entertain!

Bringing Elijah to karate is one of the many things Dan takes care of each week. I took him to karate tonight for the first time in a long time and it was so much fun! His skills are coming along and he is working so hard. Granted, his attention wanders more than most, but he tries his best. Here's a cute pic I snapped of E and S afterward (I really tried to get Lamby out of the shot).

Here's a quick video of my silly boys enjoying the lovely outdoors..

I got called into work tomorrow and Wednesday, so I'll be doing the "scramble," as I call it. Get E on bus-get S to daycare-drive quickly down to Cannon Falls-work 5 hours-hurry home-get E off bus-get S from daycare-BREATHE. If Elijah has a "great" day tomorrow, we plan to visit a park after school that the boys having been just dying to go to for weeks. I hope it works out! Have a great night and thanks for putting up with my rambling (once Dan is home I won't be so annoying).

It's the little things!

After a not-so-shining day being a mom (and beating myself up about it), Sammy called me into his room after I had put him to bed.

"Mommy? I really REALLY love you. I love you TONS OF TIMES!"

We had kind of a rough day today. Both boys are exhausted. A croup episode always sets us back extra a couple days. By the end of the day I felt like the world's worst mother. My patience was gone, I was quick to raise my voice...ugh. I'm ready to start a new day tomorrow. I put Elijah to bed super early in hopes that he can catch up a bit.

I signed on mainly to share Sammy's line, so that's all I've got. :) Have a good night!

Croup: Season 6, Episode 3 (Elijah)

We're starting off with a bang sans Dan. Juuuust as my sleepy body was crawling into bed last night, I heard stridor over the monitor and for some reason was not at all surprised. I carried Elijah for the second time in two days, this time to a steamy bathroom. The stridor wasn't super-scary, thankfully, so an epi neb wasn't necessary. We snuggled while sitting on the edge of the tub for 20 minutes and then I gave him a dose of oral steroids and put him in bed with me. From that moment until 2:00am, I went from placing my hand on his chest to putting my ear to his chest to asking him if he was ok...repeat 100 times. 2:00 (the witching hour) has always been Elijah's hour when croup is the most awful, if it's going to be awful. I realized I was not getting ANY sleep, so I put him back into his own bed at 2:00 on the dot. He had mild stridor the rest of the night and at 6:00 (the magic hour) all was well and he was ready to start the day!

Not surprisingly, I suppose, he had a "bad" note from his teacher today. It was his first in a long time, but with the steroids in his body (this med has always done a number on his mind/body) and lack of sleep I could have a little understanding. My attempt at putting both boys to bed early tonight was a complete failure. We are an overly tired bunch right now. I'm praying for a healing, restful weekend for all of us! And for a great DC trip for Dan! We miss him!

I'm believing for a turn-around day tomorrow. I'll be starting the day off with funfetti-strawberry pancakes! Come join us! :)

The runners

Day #1 of temporary single-mom-dom down! Nine to go! There is something so strange about having Dan across the country while leaving Sammy in one spot, Elijah in another and traveling 60 miles to work. I didn't like it! I swallowed down tears all day. It didn't feel right. What if one of the boys needed me quickly? I was happy to scoot out of work and head toward home. Elijah and Sammy were eager to get to the library tonight! Each boy quickly picked out four books. I heard Sammy say "EEeeeewwww!" the whole ride home as he flipped through his tadpole book. "It's non-fiction, Mom. Eeeeewwww! Look at that slimy...thing! Eeewwww!"

I was so happy to go with Elijah on his field trip yesterday. I have gone with him to this same nature center a handful of times. Preschool, kindergarten and now first grade. Each trip is special because it means one-on-one time with my oldest cutie. He still loves holding my hand and being close to me, which I love! Personally, my favorite part of each trip is the bus ride home. Exhausted from exploring, Elijah inevitably falls into my lap, wrapping his arms around my legs and falling asleep. I'm so excited to do these same trips with Sammy! But let's not rush time.

There were only a handful of parents volunteering on this particular field trip, so each of us had 5-6 kids to look after. It seems I was matched up with the runners, which is ironic considering I was also looking after Elijah, my very cautious non-running walker. It was stressful! The other five kids RAN ahead of me as I constantly encouraged Elijah to "Please move more quickly!" There was a point where I realized there was only so much I could do, so I relaxed for ten seconds until.. We came upon a HUGE hill. It was steep and covered with dried grass taller than myself. My runners yelled back at me, "We're going up the hill!" Wait, what?! Hold on! I told Elijah to climb on my back. Toting my 50-pound boy, our team backpack, and my own bag of rain gear, I climbed the mountain so as to not lose track of the other children. I thought I was going to DIE when I reached the top. Then I saw ANOTHER mountain, only this one was bigger. I said under my breath, "No freaking way." The runners looked back at me as they began scaling mountain #2. I yelled, "GO FOR IT! Just PLEASE come back down!" Elijah started to climb this one on his own, but I knew I'd need to stick close because coming back down would be tough. Not only was it steeper than the last, but it was wet, muddy and very slippery. "I want to climb to the top, Mom!" Ugh. It's so tough to tell him "no," but sadly I had to. It would have taken us forever and it would have been a ton of effort for both of us, probably involving more piggy-back rides and/or carrying. The runners ran down the hill past us and then back up again. And then down and back up (I'm not kidding) and back down. Did I mention we were supposed to be looking for bird eggs and deer tracks and signs of squirrels and geese? Forget it. I was in survival mode and I wasn't ashamed. When we got back to HQ, all of the other teams had photos on their iPhones that they'd captured of various nature-related items. "Look! We saw a baby duck!" "We found a pile of deer skat buried beneath some branches!" Ha! My kids were all still alive and I couldn't have been happier about that.

That one will go down in the books. I'll never forget it. It was interesting to see Elijah's interactions with his classmates. Personally, I feel he has come such a long LONG way. He is miles beyond where he was even a year ago. He engages with his friends, much more than what we've been told, I think. We've heard nothing but, "He's socially awkward" all year, so it was refreshing to see some positive interaction, even if some of it was borderline naughty. His classmates are kind and so sweet and showed genuine love for and interest in Elijah.

I hope you all have a great weekend! Thanks for checking in on us!