Peanuts, School, and the 2E Life

Woohoo, I'm averaging about a post a year again. I'll keep on trying to change that, especially since getting my thoughts and experiences down on "paper" seems to be very useful. Maybe the kids will even want to look back on their childhood this way one day. Who knows. Or maybe they'll hate that the information is on a blog, but hey, then I'll delete it I guess. They know about it now and are fine with it, I've checked. Anyway, I digress.

One of our many summer adventures: A trip to Galaxies Edge at Disneyland. 

I think a change in mentality will help with more postings. I have to ask myself why I haven't been posting. It started because life was boring. Peanut OIT was boring (not much was changing beyond be fine, react for no reason, be fine pattern) and school was boring (one can only post so much about math worksheets and sentence structure). Then it sort of morphed into a well, no one is really going to want to hear about the things my kids are handling now. Why? Well, because it seems that talking about academic success and struggles is sometimes a sore point with other parents. That is the beautiful thing about blogging though. If you don't agree with what I am saying or it in any way offends you, then you can just stop reading and go back to whatever friendship style we had outside this blog because I won't bring these things up elsewhere unless asked.
So what are the kid monkeys up to these days? Lots. The included photos are just a small sampling of our summer adventures. We'll start with Big Monkey as we so often have. He's still doing peanut OIT. Yup. This December will mark 6 years since he ate his first peanut dose. Things are still not perfect, but life in the peanut realm is decent. Since January Big Monkey has only had 5 anaphylactic reactions. I know ONLY 5 makes many people cringe and think, "OMG, that's a lot!" However, that is down from every 2 weeks to once a month all year long. This year 4 of the 5 reactions were all clustered into one 4 week period (May/June) which corresponds to the season for his peak allergen, timothy grass. One of those 4 may have been due to fighting off a virus and traveling. The 5th reaction also revolved around traveling and not taking care to put more time between dose and hustling to the subway to get where we needed to be. Whoops. Otherwise, he is good and we just keep on moving forward.

We still made it to the Statue of Liberty even though he had a
dose related reaction that morning. We were just late. 

Little Monkey has been as busy as ever. Thankfully still no food allergies and SLIT seems to have gotten his environmental allergies under control. He still struggles with nosebleeds, but so did his great Papa, so that just might be genetic. He's loving school, kung fu, and all his music. He has taken on violin in addition to piano (maybe I posted about that last year?) and loves it.

Little Monkey feeding his favorite animal 

Big Monkey is also taking piano and kung fu. He's sort of neutral on both, but doing well and doesn't want to stop (so it must be enjoyable to some degree). He's also trying to pick up some guitar skills and will start a new online tutor class soon.

Big Monkey feeding and petting a rhino! 

Both boys have started a coding class and are showing great promise just like Daddy Monkey. We are still homeschooling and both are thriving with online classes (both live and self paced) and book work. It seems that the schedule just keeps getting busier and busier, especially since we also spend a lot of time in the winter snowboarding.

It was so neat to be this close to these huge animals!

So the newest discovery in our parenting journey is that both boys are likely twice exceptional or 2E. What is twice exceptional? Well, the formal description is:

"The term "twice-exceptional," also referred to as "2e," is used to describe gifted children who, have the characteristics of gifted students with the potential for high achievement and give evidence of one or more disabilities as defined by federal or state eligibility criteria." (nacg.org) 

It's no surprise with two intelligent parents and prodigies on both sides of their bloodlines that our monkeys would be gifted. How much so and the disabilities that have come with it was a little bit more unexpected, and proves to be challenging in both raising and educating these two.

On a cave adventure in Grand Cayman

We already know that Little Monkey is profoundly gifted, and his initial evaluation also suggests that there is something else he is struggling with. His reading comprehension scores and another reading measure were well below where his other scores suggest he should be. So he is going through his second round of evaluations this fall and winter. Hopefully before next school year we will know what we are dealing with so we can tailor his curriculum to his specific needs. His evaluation process includes testing with his educational psychologist, a sleep study, and a visit to the developmental ophthalmologist. More assessments may be pursued as the educational psychologist uncovers what exactly he is struggling with.

Little Monkey and Daddy Monkey on stand up
paddle boards in Grand Cayman.

Big Monkey completed his second round of assessments in late spring. So we have a good picture of what is going on with his brain as a whole. He is also profoundly gifted (in fact, the boys' IQ scores only differed by 3 points). This sort of blew me away as he has always struggled greatly with a lot of school work. His language skills clearly indicated he was a smart kid, but I had no idea that he was this level of smart. Apparently, he is just really good at compensating for his disabilities.

Big Monkey is dealing with a number of struggles. The first and probably common issue that many kids struggle with is a sensory processing disorder. We have over the years found ways to work around this (i.e. tried about a million different brands of socks and underwear to find ones that did not make him feel like he was wearing a cactus). Thankfully, this no longer inhibits the progression of our day or his ability to sleep or wear pants.

Big Monkey learned to solo kayak

His more pressing issues include: developmental motor coordination disorder (often called dyspraxia), possible visual processing disorder, possible auditory processing disorder, dysgraphia, and dyslexia. They also gave him a diagnosis of "provisional ADHD, mild," but the truth is that the other listed disabilities often mimic the symptoms of ADHD. So we will address those first and then there is a really good chance any ADHD symptoms will disappear. What are each of these "disorders" and how do they affect his education and daily life?

Big Monkey snorkeling off shore.

Dyspraxia - I will admit that this diagnosis probably offered me the biggest sigh of relief as a parent. For the longest time I thought somehow I had created a lazy child. A kid unwilling to do things like learn to tie his shoes. Dyspraxia is a delayed development of motor skills and/or difficulty coordinating movements. This makes it difficult to master simple every day tasks including age-appropriate self care items (like tying shoes or buttoning buttons). We practice these items almost every single day and have for years, but they are still a struggle. Physical therapy or occupational therapy is usually used to help, but many have found that marital arts practice, if done correctly, has far more success. So we are already walking down the right path for him. The best way to really understand what Big Monkey experiences is to think of it like this: Big Monkey knows the idea behind tasks like tying his shoes. However, his brain cannot tell his muscles what to do. The two are disconnected. If you can physically manipulate his muscles movements while verbally describing to him what he is doing and how it should feel, then he will eventually be able to start to connect the two and accomplish the task (this is why martial arts works). As far as shoes are concerned, velcro shoes are far more worth it than the effort and frustration to have laces. Even I have velcro shoes and Daddy Monkey just replaces all his laces with elastic laces that he never has to tie. Pick your battles. So all those people that said tying shoes was some required milestone for kinder or 1st grade or something? Well, this is one reason why a school environment is not suitable for Big Monkey.

Visual Processing Disorder: This is a possible diagnosis because it still needs to be confirmed by a developmental ophthalmologist. We already have our appointment set for this. So a VPD has nothing to do with actual vision. In fact, Big Monkey has better than 20/20 vision. He is red/green deficient, but that doesn't play a roll in this disorder either. A VPD is a decreased ability to understand the information that is taken in through the eyes and affects the interpretation of what is seen. It can affect ones ability to perceive objects' positions in space which can directly affect reading and math. For example, VPD can make it difficult to see words and numbers as separate units. The equation 1 + 2 is three distinct symbols/units, but with VPD using the spacing to separate out these units can be very difficult or even impossible. Imagine how long it might take you to do a math problem if you had to spend extra time figuring out if what you were looking at is one number or 3 and then figure out how they relate to each other. It can affect reading in a similar way in that separating out words can be a challenge. Of course that means writing can also be impacted as a huge portion of writing effectively is seeing what you have put down on paper. VPD is of course more complicated than this, but what I have described is an effective overview. If the VPD diagnosis is confirmed, there are exercises that Big Monkey can do to train his brain to take in visual information differently. Basically, physical therapy for the eyes. Everything I have been told is that these exercises are hard, uncomfortable, and not enjoyable. However, they are effective if done as prescribed. VPD will be a journey for sure.

Auditory Processing Disorder: So after reading about VPD, I'm sure you can guess that APD is more or less the same concept except for the hearing sense. We are going to retest Big Monkey's general hearing, but his last exam showed normal hearing. So his APD is more likely his brain's inability to properly process and perceive the auditory signals coming in. His APD becomes especially bad in noisy environments (any place with a lot of background noise). For us it often displays as inattentiveness, lack of response, or Big Monkey asking "what?" a lot. It also means he struggles with following multi-step instructions. He just cannot process and remember what you asked him to do (see how this could potentially mimic ADHD?). Daddy Monkey suspects he has something similar and gave a great description of one aspect of APD the other day. In a place with background noise (a restaurant, bowling alley, somewhere with a TV on in the background, etc), if you try to talk to them they sometimes appear to space out or look like they are concentrating but then have to ask you several times to repeat yourself. Often they never hear everything you say. He described it as hearing the last quarter of my sentence but then having to guess at what the first 3/4 of my sentence was. Can you imagine how wrong that could go? Forget it if you talk to them when they aren't actually looking at you either. Apparently it is also much harder to process sounds over digital devices like a phone or computer as well. It's no wonder Big Monkey often can't recall things he has been told. It is amazing that he loves to be read to though and learns best with video based instruction (although those sounds are usually reinforced with visual cues as well).

There are things we can try for APD. I haven't exhausted all my research on this subject yet, but we are currently looking into two items that may be of benefit. First, there is an audiologist just outside Denver, CO that offers a filter (passive device) that is fitted and worn in one ear. Think of it like an ear plug that allows sound through. The basic idea is that the filter slows down the auditory input coming into one ear while the sound enters at the normal speed into the other ear. Apparently having the auditory input coming in at two different speeds gives the brain access to more auditory cues and helps many APD people pick up on more sounds and understand better. It does not work for everyone and does not actually train the brain to do anything (you can't train the brain to hear sounds at 2 different speeds on its own). Some kids outgrow the need for the filters, some do not.

A second option that is a relatively new idea for APD sufferers is low-gain hearing aids. These are low power hearing aids with directional microphones that are completely adjustable and customizable. They are able to directionally amplify sounds as well as dampen background noise. They can be adjusted based on needs and can even potentially be adjusted to help the brain learn to hear on its own. Essentially, eventually he could maybe be weaned off the hearing aids. They can also have bluetooth capabilities to connect to things like digital mics so that say, in college, he could have his professors mic'd directly into his ear if needed. We see a lot of potential benefit with this option and are looking into a 6 week trial of hearing aids to see if we notice any improvements before we make any decisions (I love that there is essentially this risk free way of seeing if this is a solution for us). I will be sure to keep progress on that updated here.

Dysgraphia - Dysgraphia can have many causes, but in general is a difficulty with written expression. It can manifest as poor handwriting, difficulty spelling, and difficulty getting ideas translated into written expression. In Big Monkey's case, it is probably partly related to all of the learning disabilities already listed above. Poor motor coordination will make it hard to write. VPD will make it hard to read and learn to spell as well as read what you are writing. Maybe if those things are address, some of the dysgraphia will get better. However, accommodations for this are fairly simple. Big Monkey just does most of his writing on the computer as typing now. Writing with pencil and paper is just too exhausting and results in work that sounds like a first grader was doing the writing (super simple sentences, simple ideas, etc). He has a lot more complex creative skills than what he can get onto a physical piece of paper. However, even writing via typing is not quite at grade level for Big Monkey. So we're working through these issues.

Dyslexia - Finally dyslexia. Most people have at least heard of dyslexia. However, most people's understanding of what dyslexia is only accounts for a small portion of the symptoms associated with dyslexia. Most people understand that it is the inability to read well and usually is from mixing up letters. That's part of it, but dyslexia is so much more. Big Monkey has what is called stealth dyslexia. Why is it stealth? Well, because he is still able to read WAY above his grade level. Big Monkey is in 5th grade and has a reading ability of somewhere in college level. He can read novels and things with a lot of context very easily. However, give him a single sentence (i.e. a multiple choice question, a line or two of instructions, or a very short informational passage with not a lot of context) and he is VERY likely to miss words, mess up words, and not have enough context to fill in the gaps. So that multiple choice question that asks to tell "which animals are NOT included in this biome" has a good chance of being answered as "which animals are included in this biome." See the problem here? He'd never know that he read the question wrong because you can probably guarantee one of the choices aligns with what he thought he read. This results in test scores that can severely underestimate his abilities as well as impact his grades. This is not just about slowing down either. Big Monkey takes FOREVER to complete tests (they give him 2 hours to complete his yearly standardized tests and they routinely take him 3 hours). Taking more time can help some, but it doesn't guarantee he reads things correctly. We can get accommodations for things like having access to headphones and tests that read him the questions. This works fairly well as long as the testing environment is quiet (see APD above).

Some of Big Monkey's learning disabilities can be addressed with therapies. Others will have to be addressed with accommodations via a 504 plan. People may be used to a 504 plan being used in a school setting and wonder how this helps since we homeschool. Basically, the 504 will follow him through school. It will help him with state testing that our homeschool charter requires as well as give us a jumping point for requesting accommodations for college board testing like SATs. He might need extra time, a computer for essays, ability to wear his hearing aids (yes, you have to get accommodations for this for testing so they don't think you are cheating), access to auditory cues for questions, requests for breaks so he can give his brain a short break (everything is 2-3x more work for him to process which is exhausting), etc. So setting these expectations in place now is important so we cannot be told in the future when the work is a lot harder that we have managed fine so far.

All of this also explains so much. It may explain Big Monkey's recurring headaches, constant exhaustion (although he will also be undergoing a sleep study just to be sure), the appearance of "laziness" (he is in fact, not lazy at all but is instead working harder than any of us to do less than the rest of us), his clumsiness and lack of physical coordination, his struggles and tears over math, and his inability to hear (or as I thought, listen) to me. I feel a little bit of guilt over the fact that it took us almost 11 years to identify these things, but at the same time, they have explained to me that he is extremely good at compensating. That made it even hard for the educational psych to tease out what was going on. It took 2 psychs almost 2 years (no evals over summer though) to finally give us a full picture of what was happening. For that I am thankful even if all the things we need to do now sound exhausting.

Many parents believe that they would love to have a gifted child. Getting into the gifted program is sometimes seen as this huge goal. Sometimes people think that having a gifted kid means things must be easy because your kid is so smart. It's a great goal, and having smart and/or gifted kids is a wonderful thing. However, having a gifted kiddo is a double edged sword. It is both a blessing and a curse. Unlike a neurotypical child or even a high achieving child, a gifted child can struggle a lot. They often do not fit into normal social or educational situations/environments. Gifted kids often struggle to relate and connect to their same-aged peers and thus struggle to make friends. These kids often are not challenged enough and therefore act out with disruptive behavior out of boredom. 2E kids have all these ideas in their brains and these abilities and yet struggle with issues that make basic functioning in life hard. They never stop asking questions, challenging you, seeking more, needing more. Some days it is utterly draining and rewarding all at the same time. Sometimes people think that when a parent says "I have a gifted child" that they are saying "my child is better..." Don't be quick to judge. While some parents may be just bragging, more likely than not, the parent is just looking for a shoulder to lean on as parenting all types of kids is tough work.

I will be forever dreaming of being back on this beach

Big changes

I know my pattern seems to be to only post twice a year, but up until this month I wasn't sure what to share or if I even should share my thoughts as I debated some big changes. Now that I have made my decisions, I feel like I can honestly share what was going through my head as well as what we decided.

You see, back in November I started second guessing our decision to pursue peanut OIT for Big Monkey. At that point in time he had been having major reactions several times a month for over a year and a half. I began to feel like not enough was being done to help us stop these reactions and get back to a normal and stress free life. I was beginning to feel a little brushed off and felt I was basically being told to wait it out, but what parent can truly spend years watching their kid have a monthly anaphylactic reaction (or worse several a month). The longest period Big Monkey had gone reaction free was 2 months. 8 weeks. That was it. I was terrified. So terrified that I made a consult appointment with another doctor for mid January.

This became all to common in our life and was scary. Photos can't even capture how terrible his face looks mis reaction. 

Then Big Monkey had another huge reaction and I panicked about leaving the doctor and plan that already knew my son's history and I backed out of the appointment the Monday before. I went back to waiting it out until the second guess snuck back in. Then one evening after a long day of snowboarding and a long drive back home, we forgot Big Monkey's inhaler for the evening. He did get all his other usual medications and had taken his morning inhaler, but we totally forget the evening dose. The following day he had another big reaction. Our doctor's response was that he needed to be on all his medications all of the time and that was the cause of the reaction.

My thoughts were that this was insane. I mean, I am a mom of 2 busy boys and wife to a busy husband that spends long hours at work. We balance a busy household and often travel various places for long days. We do our best to remember it all, but this is real life and sometimes a single dose of inhaler is forgotten or a Claritin is missed. These small mistakes once (we're not talking a week of missed medication) should not mean my kid goes into anaphylaxis. These mistakes should not leave me watching and wondering when the day my kid will die because somehow the medications don't work. Kids die of anaphylaxis. It happens. I felt that having 12 reactions a year significantly increased our risks of that tragic day happening, not to mention wondering what kind of damage all of this was doing internally to my son.

So I reached out to knowledgeable food allergy treatment friends and they gave me a few leads on local doctors as well as their opinions of them. After several conversations, I decided to reach out to one provider and she agreed to call me and discuss my son. I was a nervous wreck. I didn't know if I could trust her and her process any more than the current one we were on. I didn't know if I was making the right choice or the biggest mistake of my life. my husband assured me that we really needed someone more local. If we we're potentially going to struggle for many more years, then we really needed someone just down the street. Someone we could just call up, make an appointment and go into on any day of the week.

So I had that phone call and she was amazing. I of course still had my reservations (change is scary), but I felt good. I felt more hope than I had in a year. Big Monkey was excited about what we heard. So we made the appointment and started the process. It took us approximately 4 months to get everything going, settled and to be in a good place, but we are here. I officially left our previous OIT doctor in late May/early June and much has changed for Big Monkey.

So prior to this change Big Monkey was consuming 30 peanuts 3 times a week as well as free eating in between. He was also being treated with 2 separate environmental allergy treatments, an inhaler, nasal spray, and daily antihistamines. We overhauled about half of this plan with the new doctor.

First, we dropped the environmental allergy treatments of SLIT and Grastek. We kept the inhaler, nasal spray, and antihistamines with the thought that his body was just totally overloaded.

We dropped his peanuts down to 8 but went back to having them every single day (there are some exceptions to this). He also went back to having a 2 hour rest period post dose. Seems like a step backwards, but if it means no more reactions, then it is actually a step in the right direction.

Sadly, Big Monkey reacted to the 8 peanuts 2 weeks in a row in late May. So I made another appointment to go in and adjust his plan. Our new doctor didn't bat an eye and loved that I came in to make changes (did I mention how much I love them?).

Big Monkey now eats only 3 peanuts a day. THREE. He is of course thrilled since he hates them. He has also stopped needing all the sugar and junk he was consuming with the other peanuts. This is a huge deal for us since he also has familial high cholesterol and really does not need to be eating that kind of stuff all the time. So far it has been 5 weeks since our last reaction. Obviously, we have a long way to go before we know for sure if this new plan is working (especially since grass season just ended a few weeks ago here), but I say this is going the right direction. I have noticed other minor improvements with him that I didn't really realize were occurring until they went away.

Needless to say, I am super happy with my decision. It took me a long time to get to this place and make it happen, but it was the right call. Hopefully this will be our last doctor and our last protocol, but I won't heatitate to adjust things in the future if we need to. Big Monkey seems to be a bit unique and we will do what we need to.

Quitting is apparently not an option. I have offered it many times to Big Monkey as I know I am exhausted by all this. He refuses every time and practically cries at the thought. He wants to go to birthday parties and eat cupcakes, get ice cream from the ice cream shop, fly on airplanes, go to Europe,and eat at restaurants. He wants to do all of these things without worry and without anyone having to make special accommodations. He only wants to request no peanuts in his food. I get that. He is a wise 9 year old. And handsome too.