This week Max finally got tested for ADHD. We brought with us the teacher evaluation sheets as well as the one I filled out and he took the test which I thought was going to be this big difficult long test – from the way everyone talks about it and the way no one wants to pay for it and the years it’s taken me to get him to this point…it turns out to be a 15 minute test. I’m choking back my angry feelings that everyone – health insurance, doctors, teachers, etc – making this seem so complicated when it is very very simple.
Max does not have ADHD. It is conclusive when all the data is compiled. Just looking at the data from the computer stimulus test it is easy to see why everyone all along the way has thought it likely that he had ADHD. But he doesn’t. The test revealed some indication that Max has some auditory processing issues but to explore that further would require an occupational therapist qualified to do sensory processing assessments. This would either cost us thousands of dollars out of pocket or that the school use their resources to perform such tests.
I almost started crying in the office. I think the doctor thought I was disappointed that Max didn’t test positive for ADHD. That’s not it at all – given my choice I would choose that Max not have any brain or neurological disorders. I almost started crying because I have been pushing and pushing for this testing for years so I could rule it out and move on. I was crying because other than the awful homework nights and PE failing – Max has been doing very well this year. So well that all of his teachers and the school counselor can’t see what the problem is that I keep talking about. I feel fraudulent. I feel like the hypochondriac who feels cancer spreading in her body but no one else sees it until it’s suddenly an urgent problem requiring surgeries and treatments I can’t afford. I feel like the mentally ill person no one believes because I’m, you know, mentally ill and us people have a tendency to see things distorted and enlarged.
Except that I know I’m not imagining the problems Max has had since he was a kid. I know I didn’t imagine the self harm. I know I didn’t imagine him talking about stabbing himself to death when he was two because he got in trouble for something and felt really bad. I know I’m not imagining the difficulty he’s had fitting in socially. I know I’m not imagining the teachers and principal at Ballston Community school calling me three times a week to tell me about Max’s disruption of their classrooms, his disrespect of this teacher or that, his refusal to cooperate, his altercations with the older kids, and them all looking to me for a solution. Them looking to me to get him tested, or medicated, or give him consequences that would make his behaviors STOP.
Everyone looking at me to DO SOMETHING ABOUT MY KID.
I know I didn’t imagine how his fifth grade teacher gave up on him and had to send him to the principal’s office several times a week just to get him out of her classroom where he was making it impossible for her to teach the other kids. I did not imagine that awful meeting I had with his teacher, the principal, and another teacher who wanted to be in on the meeting to tell me how disruptive and obnoxious my kid is in assemblies – the only time she had to deal with him. I did not fucking imagine all these people telling me the school couldn’t do anything else for my kid. They were done.
They looked at me and asked me WHAT ARE YOU GOING TO DO ABOUT YOUR CHILD?
So I almost started crying because everyone keeps telling me I need to do something about my child and now everyone’s looking at me and asking why I’m making such a big fuss because my kid is obviously JUST FINE. It makes me want to tear my hair out.
The tests have conclusively ruled out ADHD and the current psychologist and the previous one that I didn’t like both think he doesn’t have OCD either. What looks like OCD is apparently sensory processing issues. But right now there is no official explanation for his intense need for rituals. The bed-time ritual whose order is very important and without which he will not sleep – there’s no official explanation for it. But other people’s kids don’t stay up until 3am waiting for their bedtime routine to begin because their parents accidentally fell asleep before getting him into bed. yeah, that happened. Max stayed up waiting and waiting for me to tuck him in and put the fan on and give him his melatonin and his book and put the frogs on – he got so tired trying to stay awake and finally came down to wake me up and angrily ask me why I never came up to tuck him in.
I asked him why he didn’t come to get me earlier. He didn’t know. It didn’t occur to him. He was waiting for things to happen the way they’re supposed to happen.
What now? Nothing. I worked hard all this year to avoid suddenly finding ourselves back in that bad place with no support in place to deal with it. I wanted to set things up for Max to avoid having to wait until things get BAD to get him help. I worked and stressed tirelessly for nothing.
Philip reminds me that it wasn’t for nothing. After four years of not being able to get him tested to find out if he does, in fact, have ADHD – we finally know for sure. I wish it didn’t leave more questions and uncertainty, but it’s true that having at least this one thing crossed off the list of possibilities is important. It’s off the table. My kid isn’t “normal” or “typical” but we know at least one thing he’s not. That’s something even if it doesn’t help me prepare for the bad times I know will come.
The psychologist thinks Max most likely has NVLD and describes it as a personality disorder rather than a brain disorder. He thinks the reason Max is doing so well this year is because he’s in an environment that’s working for him and has teachers that he likes and respects – except for the PE teacher – and that as long as he has an environment that works for him and as long as he likes his teachers then he’s going to seem pretty normal and the school isn’t going to see his behavioral problems. He says that when that changes, and he predicts that if it doesn’t in 8th grade then it likely will in High School, Max will likely act-out and become problematic as he was before. So if it gets bad – and the behavioral issues return – then I push the school to test him for learning disorders.
In the meantime I can’t ask for any accommodations from the school. Teachers can make them as they individually see fit and most of them already are to some degree. The biggest issue this year has been the homework and his PE teacher. He is trying harder with his new PE teacher and isn’t flunking his class now (the better shoes that correct his pronation are helping too). As for the homework – it hasn’t been an issue during testing because he’s had light to no homework and it’s been AWESOME. As the teachers return to the normal level of homework I will instigate my plan to help Max with or without their cooperation.
It is ridiculous for my kid to do more than one and a half hours of homework a night. He often takes two to two and a half hours to do a full night of homework. Sometimes it becomes three hours. This is unacceptable to me. I have told the counselor and I will be telling the teachers that I will time his homework on any night that he has a full load so that he doesn’t do more than 1/2 hour of homework per class. It’s what I have to do for my kid and it may affect his grades. That’s possible. My kid is smart enough to get straight A’s but if achieving that means going through the stressful struggle to get his assignments done and me having to spend my entire evening trying to change his dark mood and his frustration and tears back to a good mental place – it’s not worth it. I care more about Max’s emotional state than I do about him getting top grades.
I’m his parent. I know my kid. I know his strengths (he has a lot of them) and I know his struggles. My relationship with my son is important and finding the delicate balance between preparing him for reality and protecting him from it isn’t easy but it’s something I take seriously. I’m trying to make him take responsibility for his experiences outside our home but I also know he’s generally behind his peers in practical ways and pushing him when he’s not ready is both ineffective and destructive.
When Philip came home after the testing and commented to Max about his test results Max said “Yeah, I guess I’m just your problem child.”
And that about sums it up. There’s no diagnosis to explain his otherly-ness. I know he has anxiety and that his anxiety medication has helped him quite a bit. But he doesn’t even have an official diagnosis of anxiety. There’s no official explanation for why Max is so different. Why he poses such parenting challenges. It’s fucking hard just feeding the kid. It’s practically a full time job trying to get him to try new foods and find ones that are healthy or healthy-ish that he’ll eat. Being able to explain to people that his food issues are related to his OCD was the closest we ever came to shutting people up – shutting down their criticisms and interference and rudeness and unwanted advice. Now we don’t have anything. We have no official defense against everyone’s criticism. And yes – I get criticism all the time – both outright and implied.
So I’m IT. I’m our only defense. I’m wearing mental boxing gloves and I will fight anyone who tries to put my kid in their own boxes and then find him (or me) wanting. We have our own yardsticks for success and normalcy. I will do battle with anyone who suggests or implies that my kid is the way he is because he’s just a bad seed, a willful shit, or that he’s “normal” and that it’s just my parenting that’s made him into a spoiled kid who won’t eat vegetables.
Max is my problem child. Parenting him is like parenting three kids at once. I wanted protection for us. I wanted help. I wanted support. I didn’t just want those things – I’ve been desperately in need of them. But what I keep coming back to is that it’s just us. We are on our own as usual. Doctors can’t help. Teachers can’t help. There are no resources for us. There is no help. We’re on our own.
But you know what? The fact that Max is as confident and well adjusted as he is today is because of mine and Philip’s determination to parent the child we actually have and to adjust our parenting to meet our child’s needs and challenges. We aren’t following anyone’s parenting rules and we keep making it up as we go along. We change as our child changes and the most important thing we’ve ever done is to choose our battles carefully. Max trusts us. He talks to us. He turns to us and he knows he is loved no matter how weird he is and that, in fact, we love his weirdness and he loves that his parents are really weird too. He takes pride in it. So I think the three of us, with my mom in a supporting role (and who’s also wonderfully weird), will protect each other and support each other even when no one else does.
Max is an amazing kid. Parenting him is going to be the death of me but it is also an incredible privilege. This kid of mine has a whole lot of shining to do and it’s my job to make sure he has the opportunity to do so.
Before you try to fit any of us into your preconceived notions of how parents and kids should be or act – I suggest you look up!
Before you judge any of us against your own yardsticks – I suggest you LOOK UP!
My boxing gloves are on and my fists are ready.
You should know that I have a wicked right hook.