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!
Showing posts with label neuropsychology. Show all posts
Showing posts with label neuropsychology. Show all posts
Tuesday, September 13, 2016
Monday, December 1, 2014
Meeting in Room 103
I have said this a thousand times and I will say it again. We have been SO blessed with the doctors that have been placed in our lives to care for our precious boys. Dr. M traveled all the way to our southwestern suburb today to meet with Elijah's team at school. The meeting was AWESOME. Dr. M spoke as if he has known Elijah his whole life. The entire time, I found myself shaking my head yes...yep, that's our boy...yep, that's him....oh definitely yes, that explains Elijah..
He started by explaining that E has not just one or two strikes against him, but many strikes. The main ones being an extensive medical history, Nonverbal Learning Disorder and also being on the autism spectrum (some resulting strikes being sleep issues, anxiety and OCD). He explained the main aspects of NLD and how it is not a learning disorder but an information processing disorder. Also, how there are certain things that E's brain cannot do and will not ever be able to do, such as looking at a sheet of math problems and having the ability to prioritize the information and get through it without being totally overwhelmed. I could see things clicking with the teachers as Dr. M described how NLD kids react to school work and expectations and visual clutter.
Together, we addressed the main problem areas and even set a few plans in motion. Dr. M really stressed reinforcing SKILLS. For example, probably E's biggest "trouble spot" while in school is his inappropriate talking. Sometimes he blurts out noises and sometimes he says potty talk. Sometimes he calls people names for no reason at all. Since kids like Elijah think in steps and learn through a lot of verbal repetition, we came up with a plan to write out three concrete steps for him to follow when he starts to say an inappropriate word or noise. Dan and I are in the process of coming up with exact verbiage and then we will repeat, repeat, repeat those steps to him until he can stop the inappropriate sounds/talking before they happen. We will share our exact steps with the school so they can use the same words. Every time I talk to Dr. M, I gain some sort of new and valuable information. One of the things he said today that really helped me understand Elijah was that we (teachers/parents) need to keep repeating things to him until he understands....and that even though he might appear to understand and tells us he understands something, we will not truly know that he understands until we HEAR HIM REPEAT OUR OWN WORDS TO HIMSELF. Our scripts become his scripts. This is how he is going to get through school and life.
One of the things I've been saying for so long is that Elijah is confusing because at first glance, he appears to process information in a completely normal manner. He makes eye contact, he is engaging, he answers questions (mostly) appropriately and he smiles, laughs, interacts and even tells jokes. A person just meeting him could have a 2-minute conversation with him and have no idea the amount of processing that is taking place in his brain. So when you ask this engaging, smart little person to complete an abstract task like draw a picture and write a story to go along with it, you become confused when he absolutely cannot follow through. It can even be seen as complete defiance or manipulation.
Dr. M once again provided such good information. We feel very thankful for him and for E's teachers and team who were so willing to attend the meeting and who seemed so receptive (as they feverishly jotted notes in their notebooks) to understand more about Elijah and NLD in general.
I'll end on that thankful note. Next installment...the sassiest Sammy you'll ever meet. :)
He started by explaining that E has not just one or two strikes against him, but many strikes. The main ones being an extensive medical history, Nonverbal Learning Disorder and also being on the autism spectrum (some resulting strikes being sleep issues, anxiety and OCD). He explained the main aspects of NLD and how it is not a learning disorder but an information processing disorder. Also, how there are certain things that E's brain cannot do and will not ever be able to do, such as looking at a sheet of math problems and having the ability to prioritize the information and get through it without being totally overwhelmed. I could see things clicking with the teachers as Dr. M described how NLD kids react to school work and expectations and visual clutter.
Together, we addressed the main problem areas and even set a few plans in motion. Dr. M really stressed reinforcing SKILLS. For example, probably E's biggest "trouble spot" while in school is his inappropriate talking. Sometimes he blurts out noises and sometimes he says potty talk. Sometimes he calls people names for no reason at all. Since kids like Elijah think in steps and learn through a lot of verbal repetition, we came up with a plan to write out three concrete steps for him to follow when he starts to say an inappropriate word or noise. Dan and I are in the process of coming up with exact verbiage and then we will repeat, repeat, repeat those steps to him until he can stop the inappropriate sounds/talking before they happen. We will share our exact steps with the school so they can use the same words. Every time I talk to Dr. M, I gain some sort of new and valuable information. One of the things he said today that really helped me understand Elijah was that we (teachers/parents) need to keep repeating things to him until he understands....and that even though he might appear to understand and tells us he understands something, we will not truly know that he understands until we HEAR HIM REPEAT OUR OWN WORDS TO HIMSELF. Our scripts become his scripts. This is how he is going to get through school and life.
One of the things I've been saying for so long is that Elijah is confusing because at first glance, he appears to process information in a completely normal manner. He makes eye contact, he is engaging, he answers questions (mostly) appropriately and he smiles, laughs, interacts and even tells jokes. A person just meeting him could have a 2-minute conversation with him and have no idea the amount of processing that is taking place in his brain. So when you ask this engaging, smart little person to complete an abstract task like draw a picture and write a story to go along with it, you become confused when he absolutely cannot follow through. It can even be seen as complete defiance or manipulation.
Dr. M once again provided such good information. We feel very thankful for him and for E's teachers and team who were so willing to attend the meeting and who seemed so receptive (as they feverishly jotted notes in their notebooks) to understand more about Elijah and NLD in general.
I'll end on that thankful note. Next installment...the sassiest Sammy you'll ever meet. :)
Wednesday, November 12, 2014
IEP meeting 2014
We had possibly the most positive and promising meeting (of the seemingly 100) that we have ever had with Elijah's team at school. This was his official IEP meeting where we put plans in place for the next year while he is in school.
I requested starting the meeting with a little talk and the team allowed the overly protective mother to speak. :) Since Dr. M couldn't join us (he will be joining us on Dec. 1!), I wanted to stress the pervasiveness of NLD on Elijah. I explained how difficult it has been to get people to understand what WE know about him, so I attempted to describe it with a visual aid.
When Elijah is at his best, he is riding just below boiling point. Boiling point is the point we all get to occasionally when we stretch ourselves too thin, don't get enough rest and don't give our bodies proper nutrition, etc. When we get to that point, we begin lashing out at others, we are unable to control our emotions and we don't sleep well, among other things. It does not take much for Elijah to get into the boiling range. Once he is there, it takes him a looooong time to come back down. This process can take weeks or months, depending how thin we stretch him. A more typical progression into boiling point is a much more gradual curve. It takes time for most people to reach that stage and once we get there it is much easier to come back down to a normal range.
An important thing to point out is WHY Elijah is like this. Why does his baseline sit just below boiling? At some point during, before or after his birth, his heart condition and resulting improper bloodflow/oxygenation damaged some pathways in his brain. This caused his brain to re-route, like a detour. Imagine yourself driving down the road, intent on a destination. Maybe you have an appointment you have to get to within a certain timeframe. Suddenly you encounter a detour. You are forced to stray from your path, taking turns on uncertain roads and at times going in the complete opposite direction from your destination. Eventually, though, you return to your path and you arrive at your destination, although you are now frustrated, tired and LATE.
This is how Elijah's brain operates, which carries the label Nonverbal Learning Disorder. He can arrive at the same destination as the rest of us, but it taxes his brain to do so. Interpreting a social situation or processing a busy, noisy grocery story might be enjoyable things for him, but they require a lot of extra processing. This puts his brain into overload, which renders him incapable of doing much beside just scraping by.
Elijah's team was so awesome. They were receptive to my little speech and said so many positive things about our oldest boy. They described him as friendly, happy, smiley, affectionate and kind. His teacher told us that he is the most affectionate student she has EVER had. Just like at home, he always seeks physical closeness and hugs from adults he trusts. They seemed to understand that his negative behaviors stem from the NLD and that it was going to be a process to get him back to his baseline. In the past few school days he has been showing signs of improvement with name-calling and aggression, which we all see as a very positive sign.
There are a few strategies in place which involve OT, social and behavioral coaching/intervention. Starting immediately, he will receive two 30-minute sessions away from class with his sp-ed case manager every day, as well as 15 minutes each at the beginning and end of each day where he can gradually integrate into and out of class. In addition, he will receive 15 minutes twice/week with his DAPE teacher (adaptive PE). We will continue doing partial days and re-evaluate at the end of December. I made sure to let the team know that Elijah is likely (99.99%) to not be ready to return to full days any time this year unless we want him to soar back up into the scary realms of boiling. Mr. F assured us that nothing would be written in stone regarding length of school days, so we can play that by ear. I asked about getting Elijah an aide, and Mr. F explained that the resources aren't available at this point to give him an adult dedicated solely to him. However, he is hoping to shift aides around a bit to accommodate E a bit more while he is in the classroom.
I am looking forward to our meeting with Dr. M on December 1st. I know he will have insight to share with E's team. We plan to bring him down to the classroom to ask for suggestions about reducing E's visual processing. We are so thankful that his team is willing to attend yet another meeting to better understand our oldest cutie and we are thankful that we have a(nother) incredible doctor who is willing to go to great lengths to make his life more successful.
That's all for now! Dan and I have not spent time together since last Wednesday, so I must go snuggle with him. This coming weekend will be a much-coveted time together as a family. ALL of us will be together! I can't wait! Have a great week and thanks for peeking in.
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.
Friday, September 26, 2014
Going to bat
This post comes to you from one tired mama. I could fuel a skydiving plane, at least for a few loads, with the energy I have put into THINKING...and not sleeping...this week. It's been totally worth it, though! We are making progress!
Although Elijah's case manager and teacher are doing so much for him at school (they really have put TONS of effort, thought and love into our boy already this year!), I still don't feel like they truly understand the weight of the situation. I don't mean to sound ungrateful or negative at all because I am sincerely so happy about the team that is caring for him. It'll take some time. Eventually they will understand that while all the tactics and tricks are great and may be helpful short-term, we need to get to the root of the problem: Elijah's brain cannot handle full days at school. Or...it CAN (with the help of the tactics and tricks) but then he has NO reserves. He uses every bit of his energy to survive the school day. We are unable to ever do anything past 6:00 in the evening because if he's not in bed by 6:30, his sleep suffers and things escalate. Weekends have to remain super low-key. Not to mention the impact this is having on our family! Dan and I are stressed and tired. Elijah is having a difficult time controlling his emotions, which sets a bad example for Sammy (who is now mimicking his brother's outbursts).
I have been honest with his teachers. I have told them what he needs and what is going to transpire (ugly behavior turns super ugly turns super-duper ugly) if we continue to patch the symptoms. They have asked for more time to try other things, but ultimately Dan and I know that the kid just needs less on his plate.
I called Dr. M today, Elijah's neuropsychologist. I wanted to run the situation by him. He heard me and he agreed. The things that are being done at school are GREAT! But these "solutions" are band-aids. We need to get to the root of the issue if we truly want what is best for Elijah. I mentioned the partial-day idea and he suggested first trying a few hours of in-school downtime at the end of every day. I'm learning that educators and medical professionals want to do EVERYTHING POSSIBLE to keep children in the school building! I totally get that for the majority of children, but for a kid who has soooo many strikes against him and has endured sooooo many struggles and is sooooo depleted/exhausted/miserable, etc etc etc?!
Dr. M offered to chat on the phone with Elijah's case manager. He is going to suggest the in-school free time and if that's not an option he'll stand behind us on doing partial days. I am so happy about this! Dan and I are hoping Elijah's team at school will see the need for this and understand our genuine intentions and still trust us. The bottom line is that Elijah has endured so much in his life and we refuse to see him suffer any more when we know there is a viable solution! If there is a way to make things easier for him, we are going to fight for it. We KNOW what he needs right now (or at least what a good first step is) and we pray that his educators will trust us.
And for those of you who have left sweet comments and sent emails about home-schooling...thank you so much for your thoughts! I don't foresee things getting out of control, but if they do we may explore another avenue short-term. We want Elijah in school for a couple of reasons. He needs to be "pushed" socially...and daily (not too much, obviously). Also, I believe that school (as much as his brain can handle) is strengthening his endurance and will help him out so much in the long run. I don't feel like home-schooling would push him enough, but full days at school push him too far at this point in his life. We need to find a middle ground and we are HOPING that can happen in a school setting and we will do everything we can to make that work.
Thanks for reading and for all of your support and suggestions. We cherish every note, thought and prayer! THANK YOU THANK YOU!
Although Elijah's case manager and teacher are doing so much for him at school (they really have put TONS of effort, thought and love into our boy already this year!), I still don't feel like they truly understand the weight of the situation. I don't mean to sound ungrateful or negative at all because I am sincerely so happy about the team that is caring for him. It'll take some time. Eventually they will understand that while all the tactics and tricks are great and may be helpful short-term, we need to get to the root of the problem: Elijah's brain cannot handle full days at school. Or...it CAN (with the help of the tactics and tricks) but then he has NO reserves. He uses every bit of his energy to survive the school day. We are unable to ever do anything past 6:00 in the evening because if he's not in bed by 6:30, his sleep suffers and things escalate. Weekends have to remain super low-key. Not to mention the impact this is having on our family! Dan and I are stressed and tired. Elijah is having a difficult time controlling his emotions, which sets a bad example for Sammy (who is now mimicking his brother's outbursts).
I have been honest with his teachers. I have told them what he needs and what is going to transpire (ugly behavior turns super ugly turns super-duper ugly) if we continue to patch the symptoms. They have asked for more time to try other things, but ultimately Dan and I know that the kid just needs less on his plate.
I called Dr. M today, Elijah's neuropsychologist. I wanted to run the situation by him. He heard me and he agreed. The things that are being done at school are GREAT! But these "solutions" are band-aids. We need to get to the root of the issue if we truly want what is best for Elijah. I mentioned the partial-day idea and he suggested first trying a few hours of in-school downtime at the end of every day. I'm learning that educators and medical professionals want to do EVERYTHING POSSIBLE to keep children in the school building! I totally get that for the majority of children, but for a kid who has soooo many strikes against him and has endured sooooo many struggles and is sooooo depleted/exhausted/miserable, etc etc etc?!
Dr. M offered to chat on the phone with Elijah's case manager. He is going to suggest the in-school free time and if that's not an option he'll stand behind us on doing partial days. I am so happy about this! Dan and I are hoping Elijah's team at school will see the need for this and understand our genuine intentions and still trust us. The bottom line is that Elijah has endured so much in his life and we refuse to see him suffer any more when we know there is a viable solution! If there is a way to make things easier for him, we are going to fight for it. We KNOW what he needs right now (or at least what a good first step is) and we pray that his educators will trust us.
And for those of you who have left sweet comments and sent emails about home-schooling...thank you so much for your thoughts! I don't foresee things getting out of control, but if they do we may explore another avenue short-term. We want Elijah in school for a couple of reasons. He needs to be "pushed" socially...and daily (not too much, obviously). Also, I believe that school (as much as his brain can handle) is strengthening his endurance and will help him out so much in the long run. I don't feel like home-schooling would push him enough, but full days at school push him too far at this point in his life. We need to find a middle ground and we are HOPING that can happen in a school setting and we will do everything we can to make that work.
Thanks for reading and for all of your support and suggestions. We cherish every note, thought and prayer! THANK YOU THANK YOU!
Wednesday, May 21, 2014
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.
Monday, May 19, 2014
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
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
Tuesday, April 29, 2014
Neuropsych visit
I am still working down in Cannon Falls for a few more days, so life seems a bit nuts in general right now. Working away from home in addition to working from home in addition to managing family stuff....sigh. I often wonder, What are we doing to ourselves?! Dan and I have created such an unconventional and strange life for our family. We have found a way to have at least one of us at home most of the time with our boys, which is so incredibly awesome. It has been our ultimate goal to have at least one of us here for the boys while they are little. But we work so hard for it, and some seasons can be pretty challenging (cue now). Dan leaves for a ten-day DC trip on Thursday. Then skydiving season will be in full swing. Then wedding season starts. Then then then... We'll all be back together as a family in October! :)
I brought Elijah to his appointment with his new neuropsychologist today. The newest new doc! Do you have any guesses about how awesome he was? Elijah has a record for having only the BEST doctors, and this one was totally top-notch, right along with the others. Perhaps I should start another side business involving connecting parents with the most excellent pediatric medical care in the Twin Cities.
Dr. M (#2..this is our second Dr. M) was seriously awesome. Compassionate, understanding, kind and super smart. He took as much time as necessary (3+ hours) to fully understand Elijah. As he explained to me, he wanted to get inside Elijah's head and understand how he operates. He took an entire hour and a half with just him...asking questions and performing memory, attention and academic "tests." Then he talked to me one-on-one for over an hour.
He needs to sort through his results before giving me a concrete report, but he shared some preliminary thoughts with me. First of all, he hates labels (I love this). I shared with him that some people in the school system and in the medical world have mentioned labels such as EBD, ADD, ADHD and autism. His response went something like this: ADD? Autism? Elijah doesn't have either and should not be labeled as such. Does he have qualities from these diagnoses? YES. He most definitely has attention issues and social issues. Do these issues stem from ADD and autism? NO, most likely not. [insert him holding up E's rap sheet of medical procedures] THIS is likely to blame, and for good reason. Major things happen in a person's body and mind when they endure major operations or health issues. Take that times a hundred in Elijah's case and there are going to be things that are seriously delayed. This is not a case where we want to put a label on a child, unless the label is....JUST BEING ELIJAH! This is who Elijah is, and everyone who interacts with him needs to know what he has endured in order to help their understanding of him. Without a desire to understand his background, he wouldn't make sense.
I so appreciate this. Like Dr. M#1, he gets it. He totally understands. He sees Elijah's arm flapping and repetitive talking and doesn't make judgments or place mental labels. He sees his history and he understands that this is just who our boy is!
He agreed that his Deaf and Hard of Hearing label at school is necessary for now, but that we need to get him under a different label eventually (asap). He is not currently getting the support he needs with his social deficiencies. This is something at the top of our list going forward. Dr. M feels that his social immaturity stems from a slow development and immaturity, which inevitably has led to anxiety. His initial thoughts are that anxiety (and sleep issues) are at the root of most of his challenges.
I have an appointment scheduled for May 12th to go over final results, so we'll receive further thoughts/results at that point. Elijah has never fallen into any specific category, but has always displayed characteristics of various "disorders." I think we are learning that he is just....Elijah! He is just who he is and we love him for it. I'm feeling super thankful for another incredible, smart doctor who was put in our path! By the way, this amazing Dr. M is more than willing to COME TO IEP MEETINGS! I love him. Elijah....no, all of us...are so blessed.
Thanks for checking in! Tomorrow I'll be going on a rainy and cold field trip with E to a nature center. We're excited!
I brought Elijah to his appointment with his new neuropsychologist today. The newest new doc! Do you have any guesses about how awesome he was? Elijah has a record for having only the BEST doctors, and this one was totally top-notch, right along with the others. Perhaps I should start another side business involving connecting parents with the most excellent pediatric medical care in the Twin Cities.
Dr. M (#2..this is our second Dr. M) was seriously awesome. Compassionate, understanding, kind and super smart. He took as much time as necessary (3+ hours) to fully understand Elijah. As he explained to me, he wanted to get inside Elijah's head and understand how he operates. He took an entire hour and a half with just him...asking questions and performing memory, attention and academic "tests." Then he talked to me one-on-one for over an hour.
He needs to sort through his results before giving me a concrete report, but he shared some preliminary thoughts with me. First of all, he hates labels (I love this). I shared with him that some people in the school system and in the medical world have mentioned labels such as EBD, ADD, ADHD and autism. His response went something like this: ADD? Autism? Elijah doesn't have either and should not be labeled as such. Does he have qualities from these diagnoses? YES. He most definitely has attention issues and social issues. Do these issues stem from ADD and autism? NO, most likely not. [insert him holding up E's rap sheet of medical procedures] THIS is likely to blame, and for good reason. Major things happen in a person's body and mind when they endure major operations or health issues. Take that times a hundred in Elijah's case and there are going to be things that are seriously delayed. This is not a case where we want to put a label on a child, unless the label is....JUST BEING ELIJAH! This is who Elijah is, and everyone who interacts with him needs to know what he has endured in order to help their understanding of him. Without a desire to understand his background, he wouldn't make sense.
I so appreciate this. Like Dr. M#1, he gets it. He totally understands. He sees Elijah's arm flapping and repetitive talking and doesn't make judgments or place mental labels. He sees his history and he understands that this is just who our boy is!
He agreed that his Deaf and Hard of Hearing label at school is necessary for now, but that we need to get him under a different label eventually (asap). He is not currently getting the support he needs with his social deficiencies. This is something at the top of our list going forward. Dr. M feels that his social immaturity stems from a slow development and immaturity, which inevitably has led to anxiety. His initial thoughts are that anxiety (and sleep issues) are at the root of most of his challenges.
I have an appointment scheduled for May 12th to go over final results, so we'll receive further thoughts/results at that point. Elijah has never fallen into any specific category, but has always displayed characteristics of various "disorders." I think we are learning that he is just....Elijah! He is just who he is and we love him for it. I'm feeling super thankful for another incredible, smart doctor who was put in our path! By the way, this amazing Dr. M is more than willing to COME TO IEP MEETINGS! I love him. Elijah....no, all of us...are so blessed.
Thanks for checking in! Tomorrow I'll be going on a rainy and cold field trip with E to a nature center. We're excited!
Monday, April 7, 2014
Cardiology check-up
Today was Elijah's first day back at school after a long spring break. He had an "awesome" day! Wooo! We picked him up a bit early and scooted downtown for his bi-yearly cardiology visit. My tummy always feels a bit "off" on cardio-visit days, and today was no exception. All was well, though. In fact, everything looked GREAT! Dr. G had told us last fall to expect another heart cath this summer. Well, guess what! His heart function and pressures looked great (for him) today, so no heart cath for another 6-9 months! This will be the longest stretch between heart caths EVER!
We asked Dr. G about a timeframe for the next valve replacement (open heart), and he said it would be a minimum of two years. Maybe more. Elijah has some big growing years ahead of him so the faster he grows, the sooner the next big surgery will need to happen. We're thinking 2016 might be The Year.
I know E's sleep doctor has conferred with Dr. G about the new meds he is taking to help improve sleep, but I couldn't help but ask him about the meds myself. He had ZERO worries about these meds adversely affecting his heart function in any way. Phew! It always feels good to get the Dr. G endorsement firsthand. Love him.
By the way, we have been verrrrry gradually increasing Elijah's sleep meds over the past 10ish days and we really have no idea if they are working. I think he is sleeping a bit later in the mornings, but his behavior at home hasn't been ideal. We will continue with the meds for a bit longer, increasing the dosage by a bit, and see how things go. THANK YOU to the commenter who suggested the baby video monitor to keep an eye on his sleeping during the night. What a great idea! It's on my list for this week so I don't have to wonder for hours during the night whether he is asleep or wide awake.
Literally while we were at the doctor's office today I got a call from the neuropsychologist's office. They had received our paperwork and were ready to schedule an appointment. Yay! It is much sooner than I anticipated, so Elijah will have a FIVE-HOUR evaluation done on April 29th. I know this will provide us with even more valuable insight into how Elijah works and thinks. I'm genuinely giddy about this visit, whatever "news" we receive. The puzzle pieces keep clicking into place!
Dan leaves for a five-day work trip tomorrow, so the boys and I will be flying solo for a while! Our agenda includes: a bit of daycare time for Sammy so I can get some work done (he is NOT happy about this), a visit to the library (Elijah is very interested in Abraham Lincoln lately), trips to the park, pizza-movie night, GREAT days at school and lots of boy-Mama time! Please pray Dan's trip goes well and that the boys and I have a healthy, fun week. Wishing you all an incredible week, too!
We asked Dr. G about a timeframe for the next valve replacement (open heart), and he said it would be a minimum of two years. Maybe more. Elijah has some big growing years ahead of him so the faster he grows, the sooner the next big surgery will need to happen. We're thinking 2016 might be The Year.
I know E's sleep doctor has conferred with Dr. G about the new meds he is taking to help improve sleep, but I couldn't help but ask him about the meds myself. He had ZERO worries about these meds adversely affecting his heart function in any way. Phew! It always feels good to get the Dr. G endorsement firsthand. Love him.
By the way, we have been verrrrry gradually increasing Elijah's sleep meds over the past 10ish days and we really have no idea if they are working. I think he is sleeping a bit later in the mornings, but his behavior at home hasn't been ideal. We will continue with the meds for a bit longer, increasing the dosage by a bit, and see how things go. THANK YOU to the commenter who suggested the baby video monitor to keep an eye on his sleeping during the night. What a great idea! It's on my list for this week so I don't have to wonder for hours during the night whether he is asleep or wide awake.
Literally while we were at the doctor's office today I got a call from the neuropsychologist's office. They had received our paperwork and were ready to schedule an appointment. Yay! It is much sooner than I anticipated, so Elijah will have a FIVE-HOUR evaluation done on April 29th. I know this will provide us with even more valuable insight into how Elijah works and thinks. I'm genuinely giddy about this visit, whatever "news" we receive. The puzzle pieces keep clicking into place!
Dan leaves for a five-day work trip tomorrow, so the boys and I will be flying solo for a while! Our agenda includes: a bit of daycare time for Sammy so I can get some work done (he is NOT happy about this), a visit to the library (Elijah is very interested in Abraham Lincoln lately), trips to the park, pizza-movie night, GREAT days at school and lots of boy-Mama time! Please pray Dan's trip goes well and that the boys and I have a healthy, fun week. Wishing you all an incredible week, too!
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