UAE-based expat mum: 'Rejection sensitive dysphoria is part of my child's ADHD symptoms'
American expat Amy Vogelaar says a meme led to her child’s ADHD diagnosis
“Just because you don’t get diagnosed doesn’t mean you don’t have it – you still have all the struggles but none of the support,” says Amy Vogelaar, whose 14-year-old daughter, Zaina, was diagnosed with attention deficit hyperactivity disorder (ADHD) last year.
The mum-of-two says learning that some of the traits that they had over the years just put down to a personality type were actually symptoms of the neurodevelopmental disorder was liberating.
It was something the American family discovered during the COVID-19-induced stay and study at home orders last year. “She struggles with multi-step projects – and this is what I was seeing academically. The assignments were getting more complex because she was in middle school and her teachers weren’t right there to explain and guide her, anything that had multiple steps or multiple instructions she just couldn’t even begin,” says Vogelaar, recalling a common symptom of the condition.
I was saying, ‘All you have to do is just get into the car and we’ll walk to the front gate and we’ll walk in’, and what her brain was telling her was, ‘Your mother is telling you to jump off a cliff into the jaws of sharks’.
As they began to wonder if they should ask for professional help, Vogelaar says, her husband came across a social media post that resonated with them. “My husband happened to come across on Facebook a meme someone had posted about what it’s like to have ADHD and he thought, ‘Oh, this is our kid’. And so we asked a couple of professionals, what do you think? Should we get her assessed? The teachers all said, ‘No she’s doing fine, she’s doing great’. But her guidance counselor said, she was a ‘student leader’ and she was great at that but she never made it to a single meeting. She said, ‘No matter how many times I remind her, she doesn’t come to the meetings.’ So we did get her assessed and she did come back as ADHD and everyone including Zaina went, ‘This explains so much.’”
The reason she never made it to the meetings was ‘time blindness’, a trait that alienates her from the perception of time. ”We always struggled to get her out of the house on time and school on time. And you’ll send her up to do something and you go up 40 minutes later wondering what had happened and she would be completely distracted by something totally off topic. And you know, you think she’s just being a pain in the neck or she’s just being a little kid or irresponsible. Now we know it’s an ADHD trait,” says Vogelaar.
ADHD is also the reason Zaina feels a great deal of perceived rejection that hurtles into emotional pain. “There’s something called rejection sensitive dysphoria – it’s common in ADHD and she’s always called it FOMO (fear of missing out) - but she’s always had this fear. As an example, during the lockdown, we were all doing yoga together in the living room and we would tell her, ‘We’re all dressed, we are all going to do yoga,’ and then we’d do it and she’d come down and be so hurt that we started yoga without her, but we’d been waiting for an hour. She’s [also] very, very sensitive to perceived rejection or perceived insults. We went from thinking that it was a personality trait to realising it’s actually a part of ADHD - emotional deregulation; [feeling] just complete and utter rejection to something that to the other person is very slight and very justified,” explains Vogelaar.
Learning about what was causing the upheaval was life-altering for the whole family and after trying therapy for some time, Zaina was put on medication. “The reason we started the medication was because she was still having this huge emotional ups and downs and so we talked with psychiatrist and asked if there was medication that could help with that. She just had these issues, she was going through puberty, she was 13. But we were like maybe we can try something because she’s curled up in a ball on the floor and not speaking because somebody insulted her. So we did try a medication, with which she did find she was more focused, but then what she really started to struggle when we came back in summer and she went to school was anxiety,” she explains.
Anxiety is a close cousin of ADHD and often the pair go hand in hand. The episodes began a few months ago, soon after she was diagnosed with scoliosis - a sideways curvature of the spine – for which she had to wear a body brace to school. “She started just a few months ago, just unable to go to school… initially, thought it was her choice, she was unwilling to go to school but over the days and months of trying and working with her, you just realised you are unable to break out of this crippling anxiety. Like, I was saying, ‘All you have to do is just get into the car and we’ll walk to the front gate and we’ll walk in’, and what her brain was telling her was, ‘Your mother is telling you to jump off a cliff into the jaws of sharks’. “
Because of the severity of the anxiety, Vogelaar says, “The doctor took her off ADHD medication and is trying to help her anxiety – though what we ended up doing, because she was struggling so much, was we’ve taken her out of traditional schooling for next term and she’s going to do online schooling at a different school.”
Marc Linton, Occupational Therapist at the Priory Wellbeing Centre, says: “Parents are the experts on their own children and must be an integral part of the therapy process if it’s to be successful. Carryover at home is extremely important when working with children of determination and it is where most of the progress is made when in conjunction to working with children’s specialists like occupational therapists, speech and language therapists, psychologists and psychiatrists.
Sibling tussle
Finding the name of the condition may have made understanding easier – but day to day life in the Vogelaar home is still tough, especially on Zaina’s sister. “It’s definitely taken a toll on her. She older and so often called upon to help out. She often feels like she’s making compromises to accommodate her sister. At the moment, she’s very happy to get out of the house and go to school. And we all have mental healthcare so we’ve all availed ourselves of lots of online and in person healthcare, which is highly recommended,” laughs Vogelaar.
She also credits therapy for helping her parent. She explains: “My husband and I both have individual therapy and we‘ve been seeing someone for parenting therapy, because my daughter, the one with ADHD, she kind of turned to me – she always had a great relationship with her dad. But being a 13-year-old girl… but also all of a sudden only I could help her. That’s not how we parented; it’s always been a team and so that was really hard – it was really hard on him obviously; because he couldn’t help; it was hard on me….”
And it exacted a toll on the couple’s relationship too. However, she says: “We have made great efforts and intentionally reconnected and take some ‘couple time’ out for ourselves.”
- Routine. Children with ADHD have difficulty being organised and following schedules. Therefore, structuring their environment enables them to easily organise their actions and tasks around them.
- Visual charts for rules. These are always a good way of visualising expectations and anticipating solutions when rules are broken (i.e. suggestions for when the child is restless).
- Replace statements with actions. Recommendations such as “calm down” or “think before you act” are common statements parents might make. However, as the child cannot often refrain themselves, these statements are to be avoided. They should be replaced instead by suggested actions. For example, a strategy for when the child is too fidgety could be: “let’s take three deep breaths and try again”.
- Be patient, understanding and accepting. These are key to protecting your child's self-esteem. Praise them for the effort they have made and not the outcome. Let your child know you believe in them and see all the good things about them. Build resilience by keeping your relationship with your child positive and loving.
And so Vogelaar champions diagnosis, saying, “There seems to be a stigma – like if you get assessed you are going to be on meds, if you get assessed you are going to be labelled.
“You should be able to say…it’s not that I’m stupid or careless. I have this condition, it’s just another way to be. And then we can focus on all the wonderful things that ADHD brings, like energy and enthusiasm and the ability to really focus on something that does interest you. And thinking outside the box – all of these people known for creating revolutionary things like Apple and Microsoft are not neurotypical.”
Testing ’s expensive and sometimes insurance doesn’t cover it, but the benefits of knowing, understanding, educating and getting the help and all that is just way better than the initial oh no, says Vogelaar.
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