Twice Exceptional

“If you have an argumentative or defiant child be proud that they: are practising skills for becoming a confident leader; feel safe enough to express their views; often have advanced reasoning and logic skills; and are passionate about their points of view.” 
– Dr. Lucy Russell

Twice Exceptional, or 2E, is a term used to describe gifted children with the potential for high achievement, while also dealing with neurodivergent disabilities. Some of these disabilities may include specific learning disabilities (SpLD), speech and language disorders, emotional/behavioral disorders, physical disabilities, autism spectrum, or other impairments such as attention deficit hyperactivity disorder (ADHD)”

Both of my kids are considered 2E. They are both gifted but have different “disabilities”. <- I use quotes there because for some reason calling these “disabilities” makes my skin crawl! Leighton lightly falls on the ASD spectrum, has extreme ADHD with behavioral outbursts and severe anxiety. Where as Kellan has dealt with severe speech articulation/phonological process disorders. I myself am 2E but you know, like I was told in school, “Your IQ level is too high. It may be hard for you but you’ve learned a way to overcompensate and make it work.” [07. Ode to my Mentors] In the link above it even mentions that “giftedness is often overshadowed by disabilities, or these students may be able to mask or hide their learning deficits by using their talents to compensate.” – Yup, that was me. And the struggle was real!

I am SO thankful that we have the pediatrician that we do, as well as are in the school district that we are. SO far – they have done a great job meeting the kids’ needs! Kb has an actual iep from early intervention but we haven’t needed to set one up for Leighton, yet. I’m sure the day will come, esp. with middle school around the corner and all the added stressers that brings. He will be 9 when he starts 5th grade, is currently supposed to ride the middle school bus to 6th for math before being bussed back to elementary – but he’s taking a placement test and may end up in 7th grade for math insead. My 9 year old in a classroom of 12-13 year olds? Idfk about that!!

Having a gifted child has its challenges. As does having a neurodivergent child. Add the two of them together? I don’t think anyone could understand unless they themselves have experienced it. And even then, each child is different but there is definitely a deeper level of understanding among 2E parents. I didn’t realize how much more difficult it was until I met another 2E parent! I am SO [thankful] for her and luckily our boys are the same age! Unfortunately they are in a different school district and haven’t been as fortunate with accommodations. 🙁 BUT! Michigan is a ‘school of choice’ state and luckily for her son, he’ll be attending a different school next year where he’ll hopefully get the chance to thrive! ::fingerscrossed:: I honestly can’t wait to hear how it goes because it’s not only for gifted children, it’s a public school and therefore – FREE!! We have looked into private schools for Leighton, but figure elementary school is more for his -social- needs and we’ll see how the district does in middle school. We just can’t see paying tens of thousands of dollars for elementary school. Hell, I don’t know how we’ll do it, shall he need it at all, especially if they both do! It’s ridiculous how much getting an education costs, and don’t even get me started on college…

Leighton has been nothing but go, go, go since before he was born! He has always had his own timeline, it just so happens to be way beyond his years – an [old soul] as they say. He came out screaming and never stopped. Kidding, kind of. ::notkidding:: My pregnancy with him was hell! I was nearly bedridden the whole time. At 6 months I was hospitalized for a week due to my kidneys being taken over by stones; literally – doc said he’d never seen it so bad and it took me the next 3 years to pass them all. (Ha, just like my gallbladder. By the time I had emergency surgery to remove it, it was only working at 1%; usually they try to remove them if they’re only working around 25%! The surgeon took pictures because he had never seen anything like it. Yay me! ::MoreLikeWhyMe::) When I was 33 weeks pregnant my resting heart rate, while lying down, was in the 160s! That alone was hell! Luckily I didn’t have to suffer too much longer as Leighton decided he was done waiting to be born. At 35 weeks, 5 days he made his debut at 6lbs 11oz & 19.5in.

I had a really hard time adjusting as a new mom, as Leighton never slept more than 15 minute increments during the newborn stage. I also had a c-section and wasn’t cleared to do the stairs regularly until 12 weeks, so I either slept on the couch or a blow up mattress. He was hospitalized at 4 months due to RSV and his lungs have since been compromised and prone to developing pneumonia easily. He had such severe reflux (as well as a severe gag reflex) that he basically lived in a bib for the first year and a burp cloth became a permanent fixture upon my shoulder. Two different gastroenterologists suggested Eosinophilic Esophagitis (EE), which is an allergic condition that happens in the esophagus; the esophagus becomes inflamed and does not contract properly. It can get narrowed and develop rings or abscesses. [Sidetrack: I find irony in the two E’s] He was diagnosed as failure to thrive twice but after getting scoped even his GI doc was surprised that he did not show signs of EE!! Due to his gag reflex and top lip tie he couldn’t latch well for breastfeeding, so I exclusively pumped for 4 month and used special bottles that mimicked the breast, in hopes that he’d be able to latch one day. Which he did around 4 months and I nursed him for 15.5 months! Around a year old he wasn’t handling table food and ended up in OT for eating. Turns out his tongue was underdeveloped. At 12 months he experienced his first involuntary “breath holding spell”. A month later he experienced another but it was unlike any other he’d experience going forward. Let me tell you, having to give your own child CPR to then witness a seizure is without question one of the scariest moments you’ll ever encounter!

Involuntary breath holding spells are apparently a common phenomenon. Except, Leighton always has to go above and beyond and happened to be the worst case his pediatrician has ever encountered, as well as the neurologist’s. [Yes, we are that -(un)fortunate- to have such terrible luck, and no, I am not exaggerating when I tell you something was the “worst” according to our doctors.] There are usually tips and tricks you can do to get your child to breathe again, such as: blowing in their face/mouth, spritzing them with water, a loud toy (squeaky) noise – kind of like a shock to bring them out of it. Leighton however, never came to before passing out. Once he was going into a spell, literally nothing worked until he [came to] after losing consciousness. Kellan had his first episode when he was 3 months and let me tell you, his spells were so much worse than Leighton’s {in the moment}, however, I can count on my hands the number of times it happened to Kb. Leighton? Leighton was having episodes upwards of 10x a day+!

Any 2E parent knows how explosive their child’s behavior can get. The kid knows what they want but are too young to emotionally regulate logic. Leighton knew his alphabet, [both] upper and lower cases, by 18 months old. I don’t share that as a brag, I share that to give you an understanding of how mentally a head he was, while still barely being a toddler. Emotional development is still something he’s working on at 9 1/2; and it’s exhausting to say the least! So, we had to give in to him and try our best to not upset him, because he could flip like a switch and end up turning blue and passing out. It was terrifying to experience but after a while it became so normal that I didn’t even fret or try to prevent it. No use stressing over it knowing there really wasn’t anything I could do.

The neurologist discovered that his brain ferritin iron levels were low. He had to have special iron panel tests monthly because normal blood work showed normal levels. Yeah – getting a toddler’s blood drawn monthly is as wonderful of an experience as you’d imagine… ::SideEyesofSarcasm:: Treatment? Straight up liquid iron twice a day. Bleh, I legit gag just thinking back to those days! I really wish I would have written down some of the recipes because, I made some bomb smoothies back then to mask the flavor and get his nutrients in!! That was the -only- way I could get the iron into him, twice a day, and even then it took a while to find what really worked to hide that horrifying taste!! We went from 10+ times a day for a few months, to maybe 10 times a month for about the next 9 months. As he got older they slowed and his last one happened when he was about 3 ½ . Only then he replaced passing out with throwing up. His outbursts mimicked The Exorcist, each and every time, until he was about 7. There was no reasoning with him, he’d get so fixated that we couldn’t talk to him. There were times it truly felt that our child was possessed, it was so bad! We don’t believe in physical punishment but there were times it was [hard] to control the desire to just shut him up!

JUST as covid shut everything down, he was supposed to start therapy. Then no one would do virtual visits with him alone because he was only 7. It took a LONG time to finally find someone, and that was only after I was in contact with the school’s social worker a -few- times, practically begging. She finally made it possible because she personally felt that, [and I quote from her email] “a more intensive intervention may be more beneficial for him” instead of her doing Zoom calls with him. Uhm, I am aware he needed “more intensive intervention” but no one would take him on. That’s why I turned to the school’s social worker… for her to just say, {yeah, no.} We may have gotten him in but she could only see him every other week. Once in 14 day was not nearly enough. How can he learn proper coping skills from a professional if said skills couldn’t be reinforced regularly? Trust me lady, I’ve tried and suggested it all. When you’re dealing with a 2E child, with his level of ADHD and Anxiety, we as parent’s need help, too! She did give me a compliment that I have been doing everything right so that was reassuring but, man. It got to the point it felt like we were wasting time and money because she never got to see the [true] Leighton until the very -last- visit! He is so good at masking himself in public, which is that much more frustrating. I understand that this is his home, his safe space, but for us to be constantly met with the behavior we were, the “I don’t knows” and “I can’ts” for every excuse, we were at a total loss.

I -know- how hard it is for him living the way that he is. He hates it! He’s made remarks that he doesn’t “want to live like this.” And while I certainly don’t blame him, as a parent, that’s a very real, very scary thing to hear!! Igor and I have always been concerned about his mental health, especially as he gets older, which is again why we tried getting him help early. The kid would piss himself without giving any fks and would stay in his clothes. He legitimately didn’t care. He also never takes responsibility for himself, everything is always someone else’s fault. He even disassociates his brian/body from himself. “It wasn’t his fault, it’s his brain’s fault.” ::jiminyFreakingcrickets:: She obviously couldn’t tell us what they discussed, but she was very serious in that he [knows] what he’s doing! She didn’t believe that he really needed therapy at that point because until he is willing to listen, and {want} to change the way things are, there is no point. He is so black and white that if you say the -wrong- thing, he no longer listens to what you’re saying until he can correct you, and then claims he was never told xyz. She doesn’t believe that he wants things to be different bad enough, otherwise he’d be making the effort. Of course she wasn’t trying to tell us how to parent, but that he is [stable/safe?] enough for us to start “cracking the whip”, figuratively speaking.

So yeah, one of the fun things we learned about 2E children is that they are – MaSteR- >manipulators<!! Don’t get me wrong, they still struggle which is why he is medicated. BUT! They understand their conditions enough to know how to use them to their advantage. And let me tell ya, it’s been a fucking exhausting 9 ½ years!!!