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.