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?
I have lived this, and we have survived this! My son was hospitalized for being a danger to himself and others at age 6, after years of horror and stress. Through sheer luck and desperation, I connected with someone who pointed us in the right direction. My son is now 13, successful in mainstream middle school classes, kind, gentle, and in control of his emotions and temper. Watch the documentary “Diagnosis Bipolar,” and if it resonates with you we can talk. When I watched it I cried and cried, because none of the doctors or specialists had ever encountered another child like my son, but nearly every child in the movie was similar in some fashion. Heartbreaking, but a relief. Eventually my son was treated by one of the psychiatrists in the movie, and the unique medication protocol has, without exaggeration, saved our lives. I hope that I am the key to helping you find hope as well.
ReplyDeleteWe just went through something very similar with my son. He was 9 when it kicked into high gear. My husband has scars on his arms from all the times he got bitten. For a solid six months and then intermittently for the next 3-4 months he had extremely violent melt downs. Hitting, kicking, biting, head butting, swearing, threatening to kill us, threatening to kill himself. It was hell. We got the ADHD diagnosis pretty early on, but none of the meds really worked or the side effects were too extreme. It wasn't until I insisted that his aggression stemmed from anxiety and we treated the anxiety that the aggression mostly went away. He's on zoloft (anxiety) and jornay (ADHD), and biweekly counseling - and it's not perfect but he no longer attacks us and I feel like he's making slow progress. My heart goes out for you and your family. I've never felt so helpless in my life.
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