Ports in Storms

 I mentioned how hard it is to get in to any clinics, which seems to be a universal experience. The best regarded clinic in the area is the Masonic Institute for the Developing Brain, affiliated with our major research institution. I called them last year about a neuropsych assessment and they weren’t taking new patients at that time. I called back again in June because my pediatrician referred us and I was hoping the referral would get me in the door. The scheduler was super kind but said they were not taking new patients for any of their clinics, even with referrals. Further, they don’t start medications until age 7.

In chatting with the kind scheduler, I mentioned how A’s behavior had shifted so drastically. When she heard that, she mentioned that they have a PANDAS clinic. The doctor there is taking PANDAS patients only. The scheduler booked an evaluation appointment with a LCWS for the PANDAS clinic, and maybe if A met those criteria, he’d be seen there. I didn’t know much about PANDAS, but A seems to lack some of the necessary criteria, like OCD or tics. I was insanely grateful that they’d offer an appointment, but I was worried it would be a waste of everyone’s time. Still, any port in a storm, right? So we went last week.

 The LCSW was amazing and kind and patient with us. She took a very detailed history, then asked about what we might be willing to do. Medication? Yes! New psychologist? Yes! She said she’d meet with the PANDAS dr, but that even if we didn’t fit in there, she’d find some place for us. I held my breath.

Well she did it. I just got the message that the psychiatry clinic is taking A. Their doctors have discussed his case and think they can help him. I should get a scheduling call sometime soon. I know this still might not work, but I’m so unbelievably grateful that we’re going to get seen somewhere that should routinely see kids with more severe needs. Hopefully this helps us down the path to some place better.  

No One Listens

 Circling back to the feeling of not being heard, and our challenges with helping A. It's a repeat of 2016-2018 all over again.

There are very few psych med providers for a 5 year old. I could find 3 in our metro, and one of those isn't taking new patients. The other was going to have a much longer waitlist.

So we're with the one who would take us after an 8 week wait.

In March, we did a neurospych eval. We got four diagnoses from that. Everyone agrees with diagnosis #1: ADHD. Diagnosis #2 seemed plausible, until we took A to the appropriate specialist, who within 20 minutes, demonstrated that A actually had all the skills that the neurospych said he was lacking. Diagnosis #3 was flat out wrong. Everyone - long term psychologist, teachers, OT, family, even our psych med prescriber who has met Aaron ~6 times via video - everyone thinks #3 is wrong. Long term psychologist is angry that the neuropsych administered the test so badly as to get this diagnosis. Finally, diagnosis #4 is plausible, but not a great fit. Neuropsych said the dx hinged on one single behavior. Psychologist suggests a potentially better fitting alternative diagnosis for #4, aligned to that behavior. School thinks #4 right, but acknowledges they don't know about the diagnosis psychologist suggests.

The psych med prescriber, after hearing diagnosis #4, is focused only on it. She says, repeatedly, that ADHD is unrelated to aggression. She says that A's aggression is due to his inability to articulate what's upsetting him, so he acts out instead. And this is where I'm back to being ignored by doctors. First, there's a huge body of research about ADHD and aggression. They are most definitely related. A lack of impulse control means that when a person gets angry, instead of finding a solution, they physically act out. A is the king of 'act first, evaluate consequences later.' He destroys even things he wants, because he has the impulse to take something apart/break it, and he acts before thinking if it can be fixed.

The second thing is that Aaron's years of OT and psychologist visits have actually made him REALLY good at identifying and sharing what's wrong and asking for what he needs. He'll tell us, "it's too loud in here" or "I'm hungry", or "I want to have more Daddy time." He'll tell us if his tummy or his clothing hurts. He's great at telling us, "I need more space." He'll tell his sisters to leave his room, or that he wants a toy they've got. Despite all that, everyone we're working with insists that the violence is because he can't communicate his needs. Finally, finally, last week at his psychologist's office, the lightbulb clicked with the psych that this isn't a communication issue. A had told the psych that he was 'getting red' (his words for getting angry) and needed a safe space. He then told the psych what he wanted - a corner by the desk and some toys. Psych got that for him, and all was well. He was happily talking with the psych about something that interested A, and then just like that, A started pelting the psych with crayons. And the psych turned to Mr.Lines and said, "Is THAT what happens at home?!?" and MrLines said, "YES!" That got them to the state of, "huh. I see what you mean." So now the psych gets it, but he's stumped. And the med prescriber doesn't get it and still thinks aggression is due to an inability to communicate. And I just don't think so. 

We've now tried two different atypical antipsychotics for A. The first seemed to be great until June 1 when all hell broke loose. The second appears to have no impact. All the research I see recommends the third for kids with ADHD. But all that research also says that treating the ADHD ought to happen first before treating the aggression. And yet with a medication provider who doesn't want to treat the ADHD, we haven't done that. Until A turns 7, I don't have many alternative providers. I'm on a few waitlists for places that might help sooner, but even those all say they don't prescribe for 5 year olds. How can we wait another year and a half, though? What happens to A, to T, to E if we wait? Why aren't there better options for kids and families facing this situation? Why do I once again feel like I"m screaming into the void, because the people who ought to help just aren't helping?

Failing My Girls

One of the hardest things about losing Alexis, Zoe, and Quinn was the feeling that I couldn't protect them. I tried, but it was out of my control and I completely failed to protect them.

The other hardest thing was that, at least with Quinn, I knew what to do to protect her, and the doctors ignored/didn't believe/wrote me off.

I am somehow back in the hell of being unable to protect my girls and unable to get medical professionals to take me seriously.

A has had issues with aggression since around age 3.25. We've been seeing a pscyhologist and OT since age 3.5. That gave him new skills, and reduced the aggressions some, but did not eliminate them. I worried that he'd get a reputation as, "that kid" at school when he started K. So we started medication shortly after he turned 5. The medication plus the skills made a huge difference. I could cook dinner for 20 minutes, or clean up after for 20, and let the kids play with each other on the same floor with no one getting hurt. Mornings were even better, with hours of collaborative play.

Then he woke up June 1 as if a light switch had flipped. Now I couldn't step away for 2 minutes, without him really hurting his sisters. He'd be happily sitting at the breakfast table making up Paw Patrol stories one second, then stabbing them with a fork the literal next second. I couldn't walk away to get a second helping if someone asked, or help E use the potty, or get a towel to clean a spill, or anything, without him hurting someone. He'd just transition from happy to violent in an instant. 

MrLines and I tried everything we could think of. More frequent therapy. Emergency medication change. Hours a day of dedicated A and Daddy 1:1 time, in case this was attention seeking behavior. The violence didn't waver at all. A shut T's arm in the door. He pushed E down the stairs. He bruised my ribs by kicking me there, and stabbed me in the hand so badly I couldn't use my thumb for a few days. He and T were still sharing a room, and for the first time ever, he'd wake up early (unsual for him), and before anything at all happened, he'd walk over to T's bed and hit her while she slept.

And just like that, I'm back in the hell where I can't protect my girls. My beautiful, living, breathing, thinking girls, who both now flinch when A runs toward them. It's the damdest thing, because 30% of the time when he comes over, it's to give a hug or a kiss, or to bring them a toy or play. Of course, when they flinch, or I block him because I assume he's going to hit, not hug, it reinforces with him this message that he's not safe, and it makes the behaviors worse. So not only can I not protect my girls, I'm damaging my little boy when I try to do so. He seems genuinely distraught by some of this. He can't figure out what's happening with him any more than we can. He is so sad, as is T, that we moved him into a different room. 

This is long enough I'll save the 'writing me off' part for another day, but I'm struggling. In some very real ways, this is worse than losing the older girls. That was a moment that was out of my control and then a lifetime of missing them. And I don't think they ever actually knew that I failed them. This is an ongoing failure on my part to help any of my kids. The girls are looking to me to protect them, and I can't make it work 100% of the time. Closing T's arm in the door? We were coming home from school and T and A got out of the car first, because they can undo their own buckles. In the time it took me to get E out of her seat, A had done that to T. It doesn't help that T and E won't always follow my instructions like, "stay in the kitchen with me until I put the food away." or "T, come to the bathroom with me while I help E with the potty." They want free range of the house, and in pushing past me to go where they want to go, they make themselves vulnerable to their brother. When they do that, I lose physical separation I'd bee maintaining, and someone gets hurt. So I'm failing, every single day, and I don't know what to do. 

This Sucks

Kids are getting bigger. E will be 3 soon, and she remains easy and delightful. She tells jokes, is silly, and when she gets upset, she's usually quite easy to redirect into happy giggles. She did preschool last year, and although she was the youngest in her class, her teachers said she was ahead of many peers by year end. She's a ton of fun and often the bright spot in my day.

T is 5, and will start K in September. She's got an incredible memory, does great on logic, and generally likes to be helpful. When you're 1:1 with her, she does amazing. She's the biggest delight when she's just with you and not her siblings. She likes dance and music/singing and still loves her stuffed frog. She loves art crafts, and does great with both writing and coloring. She plays, lots of pretend, with A. She's got basic math down, and she's reading a number of words without help. Her teachers say she's a model student, if quite quiet. She struggled making friends in school this year, although she really wanted to be friends with one other kid.

T doesn't like having to share attention with siblings. She'll throw tantrums and is completely resistant to any calming techniques. "That won't work, not anything will work!!" is something she typically yells when upset. The tantrums were down a great deal in frequency, but thanks to increased tension at home, there's been some ramping recently. She also has big reactions. If she's throwing a tantrum and I tell her I need to take her somewhere she can calm down, and would she like to walk or be carried, she'll tantrum more instead of responding. When I pick her up to carry her, she'll inevitably scream louder that, "you hurt me!!" The slightest tap, touch, or bump and she wails about being hurt if she's the least bit unhappy. She also complains on most outings that "my legs are too tired! I can't go any farther! I want to go home." It's not just complaining though, she'll fully collapse on the ground and refuse to move. Of course, if you mention something like, "we'll get icecream when we get to the car," her legs suddenly reinvigorate and she runs there. She constantly challenges me, but in a way that I feel mostly capable of stepping up to. 

A. A will also start K in September. He loves to learn about things. His jam is really exploring new situations where he can learn something. That especially true if it relates to any type of construction, making anything, building, engineering, or sloths. He still loves sloths. A constantly wants to be moving. Thanks to 18 months of therapy (psychologist and OT) and two years of IEP services at school, A's actually really good at naming his emotions, telling people what he needs, and even building relationships with others. He's grown tremendously in that space. He's also still the kid who will hug E if he hears her crying, and think about how to help her. 

But here's the hard part. After starting A on medication in March, and seeing a great improvement in his aggression, suddenly a light switch flipped and he's intensely violent. It was an overnight change. He was doing great, and then one Saturday morning he woke up and he can not be left alone with his sisters for even a second. They both have bad cuts and bruises from him. He almost broke my ribs yesterday by kicking me in the stomach when I was working with him to dry up water he'd spilled on the carpet. Many of the attacks are random. He'll be happily playing with his sisters, or even by himself, and then stop to hurt someone. I sat with him in the back row of our van for a long drive. Just watching his face as he was watching a movie on the drive was surreal. He's completely fine and happy one second, and then this wave of  rage sweeps across him, and he attacks whoever is closest/weakest. Once he feels the need to hurt someone, he will not stop until he's done so. I've had him repeatedly chase me around our kitchen island, as I backed away and tried to redirect him to his safe spot and his beloved stuffies. Touching him to restrain him makes it vastly worse. We've abandonded the break times we've done for years because there's no way for the adult to avoid injury.  Putting him in the safe spot in his room doesn't work either, because unless you lock the door, he'll keep popping out to throw hard or sharp objects at me. I've had to lock him in there twice, because he was so violent and would kick, claw, and bite when I tried to hold him. In those instances, he destroyed T's stuff. He's shut her arm in the door, stabbed both girls with a fork, and then with Magnatiles, and hit them over the head with a wooden toy box. Mr. Lines and I have rearranged our work schedules to make sure there are always two adults if all 3 kids are present. Even then, in the time it takes to help E wash her hands after the bathroom, he can sprint across the room and hurt T. 

This is so. fucking. hard. So hard. I can't keep the girls safe. Honestly, loosing our older girls was easier than this, because it happened and it was over. My body failed us once, and that was that. This is me being faced every single day with not being able to keep them safe. I can't help A, either. My awesome, sweet boy is trapped inside this rage. 

We're changing rooms this weekend, and putting A in E's room, and E in with T. We've already made one emergency medication change for A, with no impact, so we're discussing making another change today. Because of the huge snap in behavior, which does align to an illness, we're getting evaluated for PANDAS in early July. I don't even know how to survive that long. I am just barely holding it together now. 

Rolling Dice

 Life is a roll of the dice. As far as I can tell, there are very few guaranteed outcomes. You wake up each day (hopefully), and see where things take you. I've considered myself lucky that even when life has taken me to awful places I never wanted to go, I've had the practical, physical, mental, and emotional resources to deal with it.

Procreation is also a roll of the dice. Will it work? If it does, what will be the status of any offspring produced? Who will they be and what will they be capable of? A’s story is his to share, but as I’ve mentioned here, being his parent, and trying to be a good parent, has challenged me. I’m not sure I have the right resources to deal with the challenge. And I don’t know where to go next.

I’ve searched for and found professionals. The first play therapist we found was a bad fit. She decided that the root of A’s behavior issues was the sleep training that we did at age 1. She also told A that the play therapy room was a safe space and “you can do anything you want to do in here.” Then she got quite upset when A filled a play tea kettle with sand from the sand table and poured it into a bin of musical instruments. She got even more upset when he did it again after she told him not to. I’m not sure how someone with 30 years of play therapy experience was surprised by a 3 year old pouring sand into containers after first being told that he can do anything he wants to, and then being told that he can’t do THAT, but she was. We mutually agreed to stop seeing each other after a few months.

The second play therapist uses PCIT, and that seems a better fit. He’s a licensed psychologist with 25+ years in the school systems before moving to private practice. He spent the first ~5 months working on how DH and I interact with A, essentially making sure we weren’t the root of the issues. That’s good, because for all I knew, we were the root of the issues! Therapist seems to be satisfied now that our interactions should be facilitating desired behavior, and yet, no improvements are happening. 

A month or two ago, A got frustrated during a session and threw the game the therapist was trying to play with him across the room. A threw it after repeatedly telling the therapist that he didn’t want to play any more, so he was clearly verbalizing his wants. Throwing was a normal reaction for A when forced to do something he doesn’t want to do. I think the moment a dozen ‘fishing for feelings’ game pieces went flying across the room was the moment when the therapist really understood that the behaviors I’ve been describing are beyond normal 4 year old boy behaviors. 

I expressed my concern to the therapist that it’s been months of sessions and months of me implementing the ‘homework’ and yet no improvement in behavior. Therapist acknowledged my frustration. He also acknowledged that usually he doesn’t have such a hard time connecting with kids as he’s having with A. Great. My kid is extra broken. 

We’ve also done months of OT, but OT, while extremely helpful, has taken us as far as we can go. You can equip a child and their family with endless tools, but until the child and family use them, there’s not much more you can do. 

So I rolled the dice and this awesome kid came up, but he’s hard. He snuggles, and cuddles, and giggles, and he’s curious, and amazing, and funny. He loves his dad and his stuffed puppy and sloth. I think he loves me and his sisters most of the time. He’s creative and he’s got so much potential it’s unbelievable. But he’s hard and I don’t have the right resources yet to help him with that hard, and I’m not sure where else to go to find the right resources.

Reminder: Check Yourself

 The amazing Mel from Stirrup Queens gives a priceless reminder each week: don't forget to do your backups. In this digital age, that's true, and I'm always grateful for the nudge.

I'll add a different reminder for this week: don't forget to do your skin checks.

Eight or so years ago, my dad's super fancy, doesn't-take-insurance, concierge doctor was doing an exam and noticed a small spot behind his ear. It was a location he'd never have seen on a self check, because even with a mirror, you can't really see the top, back, outside of your ear. He was in his 60's at the time. She told him she didn't really think it was anything, but she was going to biopsy it just to be safe. The biopsy came back as melanoma. 

I had always been skeptical of the ideal of concierge medicine. That said, no provider operating under insurance guidelines that compensate for approximately 32.5 seconds per patient would have spent the time to catch and biopsy that spot. I strongly believe my dad is still here today, albeit with slightly less of his ear, because his doctor was so thorough. 

Anyhow, that diagnosis, combined with my own pale, mole and freckle covered skin, earned me annual derm visits to check my skin for any concerning areas. I went in for this year's visit, 6 months late because my original appointment was booked for the day I had norovirus, then my rescheduled appointment was the day I had COVID. I had a spot of minor concern to me on my forehead. Turned out to be pre-cancerous. I now have a very ugly freezer-burn mark on my forehead, but hopefully won't find myself with squamous cell carcinoma in a few years. 

If you are a category at risk, schedule your skin check, it's worth the time and cost. If you're not sure if you're a category at risk, ask your doctor.

4.5 and 2 - Long overdue updates

 It's been a long time and a challenging one, but it's interesting to see how the kids have grown. 

T is fiercely independent in some ways, but absolutely wants to have all the attention in others. She doesn't like to do things for herself, she wants you to do things for her. It seems to be her way of confirming that you care about her. She's the one who tires easily and doesn't want to walk/run/ride as far, so sometimes it's just a lack of energy meaning that she doesn't want to do something herself, but she still wants it to be done. We've been working for months with her on how to ask politely and be patient when asking. These things are still not her strong suites.

T is smart, she has an amazing memory. If something is lost, you can count on T being the one to find it for you. If T tells you a story about what happened or what she saw, there's a good chance it's true. At home, she displays very little empathy. She can be silly if prompted, but at age 4, she'll be the one to remind me that "No, mom, he's a stuffed frog" if I ask her if her stuffed frog Mr Jumpy did something silly like eat the last cookie. In other words, she's a bit more serious than I tend to be! That doesn't mean that she doesn't giggle and have fun, but that she trends serious, not silly.

T is creative and usually wants to be the leader when playing at home. At school, her teachers tell us that she's always looking out for her brother, making sure he's safe. She even tries to help keep him out of trouble there, which is funny because she's the very first to try to get him into trouble at home! She also doesn't talk up or engage with others at school, unlike at home. We are putting T and A into separate classrooms in September with the hope that she'll be able to make her own friends and come out of her shell if she doesn't feel she needs to be A's caregiver at school. We've noticed at summer camps that she'll be the one to remember the names of friends, and to point out friends who are in the same camps together. I hope she can make friends this school year.

T's misbehavior is usually clearly driven by a desire to get more attention, or because she's tired. She's pretty good about going to her room to take a nap when she needs it. She can be trusted to play alone and she's a great helper. One on one, she's absolutely delightful. I think the experience I would have had raising her if she'd been an only child would have been vastly different than the one I have had with her as a twin and now an older sister. She spent most of age 2.5-4.25 having really spectacular tantrums. The worst one was last summer and was a full 90 minutes of top of her lungs screaming. Despite what any of the books say, no amount of acknowledging feelings helped them. No calming techniques helped. Any intervention just enrages her more. We've found that she just needs time alone with her stuffed frog to calm down. 

T is also gorgeous. I genuinely think she's beautiful. Everyone in our family is average, at best, so I have no idea where she gets it from, but I'm happy for her. She has stunning hazel eyes and beautiful curly hair. I grew up basically being told I was ugly by my parents, so I hope she knows how pretty and how smart she is.

A is still pure energy and an ear-to-ear grin. He never stops talking, or singing, or yelling. He has a beloved stuffed puppy and stuffed sloth and the stories he will tell you about their adventures show his joy and all the things he's learned. He loves helping his dad in the garage or his grandma in the garden and yard.

A has boundless curiosity, and for the most part, it's because he really wants to know and understand. He loves to cuddle and hug and climb you like a tree. He can't sit still. The only time I've ever seen him still was the first day that he had COVID. We knew he was going to be sick before the fever started because he laid down on the sofa with his grandma and didn't move for about 20 minutes. That has never happened before. A wants to be outside, playing and digging in the dirt, tearing things apart, or running around the house. Even sitting on your lap, he's a tornado, constantly shifting position from top to bottom.

A can be so amazingly sweet to his sisters, especially to E. He'll help her get her stuffed animals, he'll push her around in boxes, which she loves. He'll offer to feed her food and give her big hugs and play wit her. Unfortunately, at his worst, he'll also physically lash out and hurt her, kicking, hitting, and scratching. Sometimes it's because she's going after a toy he wants. Sometimes it's just because she happens to walk close enough to his legs that he can reach her to kick. His worst behaviors seem to stem from being told 'no'. We've done a lot of PCIT work. It seems that attention isn't what he wants, and he's actually great at telling you what he's feeling. After six months of work, our therapist told us in not so many words that, as parents, we were doing all the things we needed to be doing, so the issues weren't caused solely by our parenting styles. On one hand, it was good to hear that we hadn't "broken" our kid. On the other hand, that leaves us without a "fix" that we can implement ourselves. At the room, A just can't modulate his frustration from being told 'no' into behavior other than aggression. That aggression might be physically hurting a person, an object that a person cares about, or it might be screaming loudly because he knows that no one likes it. 

A absolutely does not follow directions. We're 9 months into OT and PT and we've made progress on hurting other people, but no progress on following directions. If he doesn't want to do something, you mostly have to physically redirect him. And once you have to get into physical redirection, then you're running into behaviors that stem from being told 'no', as described above. A is off the charts high on sensory seeking, so he's always looking for loud noises, making loud noises, and looking for tactile stimulation.

A likes to break things. Every toilet paper roll holder has been broken off the wall, all of our window screens that he can reach have been destroyed. Basically any object in our house that he can reach, he's broken. The psychologist we've been seeing since Jan said back then that he doesn't diagnose kids with ADHD until age 6 or 7, but by June he commented that we should plan to have A evaluated soon because his behaviors are consistent.

A tests high normal on intelligence and receptive language, and just barely scrapes into low normal on expressive language, specifically articulation. His speech is garbled and most people struggle to understand him. I really, really hope that time and therapy, and maybe the right medications, can help him because he is such an amazing kid. I worry that some of the amazing is going to get lost under the problem behaviors.  

E is the too-good-to-be-true kid I didn't dare dream of. She's all cuddles and smiles. She potty trained herself at 20 months. Legit, she said: "pee, potty! Diaper off!" and a week later, she was 100% done with daytime diapers. She's been using 10+ word sentences at 23 months, and 5 word sentences since 21. She is the kid with the sense of humor, joking with us on a fairly regular basis, albeit in 22 month old fashion. She shows empathy, worrying about both siblings if she hears crying or sees them upset. She adores her big brother, asking for him and always wanting to play with him.

E has a tenacity that I'm envious of. When she decides to do something, she'll keep working at it until she succeeds, typically without whining or crying. The downside of this is that we've had to move her out of her high chair already, because she decided to figure out how to unbuckle herself (and she did), and we've had to get rid of the baby gate, because she decided to figure out how to unlock it (and she did). The upside is that so far she mostly listens to directions and can get herself safely to and from the places that she needs to go. This includes climbing on and off the potty herself. Although she looks like a drunken Olympian mounting the pommel horse when it comes to getting on the potty, she can indeed succeed when she says, "Me do it!"

E is a picky eater who would happily subsist on milk only, or milk, cheese and pizza.