Edie age 8, diagnosed with:
Dyslexia: a learning disorder that involves difficulty reading due to problems identifying speech sounds and learning how they relate to letters and words (decoding). It affects areas of the brain that process language. Dyslexia has no relationship to intelligence.
ADHD: According to the CDC boys are far more likely to receive a diagnosis of ADHD—not necessarily because girls are less prone to the disorder but because in girls ADHD presents differently. The symptoms are often more subtle, and they don’t fit the stereotype. Some symptoms are: Daydreaming and in a world of her own, disorganized and messy, seems shy, problems completing tasks, verbally impulsive; blurts out and interrupts others...
By 1st grade I could see that Edie wasn’t a strong reader. Her brother, who was in 2nd grade at the time, was already reading the 1st Harry Potter book to himself so it was a stark difference between the two kids. I discussed it with her teacher at every parent teacher meeting, and was told repeatedly that she will “catch up”. By the middle of the year, she was placed in a reading recovery group with a reading specialist. No one mentioned dyslexia let alone ADHD which is scary because I would assume/hope that the trained teachers and reading specialists who worked one on one with my child would be able to clearly see what was wrong. They didn’t, and in the end the only person that suggested we get her tested was her private reading tutor. We decided to have Edie evaluated in 2nd grade after the first few weeks of her struggling socially and academically. By this time it wasn’t just her reading we were concerned with, it was her social emotional interactions with other kids. I was getting calls every week from her teacher to discuss her behavior.
We initially had a DOE evaluation which identified a Learning Disability, and again, no one mentioned ADHD. The DOE made it clear that they don’t diagnose, they just identify, and if we wanted a more concrete diagnosis, we would need to do that privately. We ended up at NYU Child Study Center where they diagnosed Edie as having ADHD and Dyslexia. The entire process, DOE evaluation, initial IEP meeting, realizing that we needed more information, and then private evaluation, took a whole school year, which in hindsight was a mistake. We should have just done the private evaluation initially and saved months and months of uncertainty.
I honestly felt a huge initial relief after her diagnosis. I knew something was off, but didn’t know how to help her. I now feel like I am starting to learn the tools to help us all. I feel like we at least have a direction, we were grasping for straws with her behavior and emotions (although sometimes it does still feel that way). When we have bad days, I try to approach them differently. I try, but am not always successful, to come from a place of understanding and compassion because most of the time, whatever she is doing or is happening is beyond her control. - We had a really bad night the other night. She just would not go to sleep and I was getting frustrated and angry. I was done!!!!!! I needed her to go to bed and I needed to be alone. I could feel myself getting angrier and angrier with the situation and then it just hit me. She just could not shut her mind off. I could see it in her eyes. She knew by blowing bedtime she would not get a check on her behavior chart, but she just could not turn her mind off. Once that hit me I changed my attitude and while she was still up for a few more hours, they weren’t filled with me irritably yelling at her. Instead, I tried helping her as much as I could.
First, we were raised with different parenting techniques, and we each bring that into our own parenting. My husband is a bit less flexible than I, and has a hard time with certain aspects of our kids behavior. One of our most contentious issues is that he wants/expects the kids to sit “correctly” at the dinner table. No elbows on the table, legs straight (not folded), no sitting on knees etc. He would never allow the kids to sit on the counter. I personally could care less how you eat, as long as you eat. For my daughter, sitting still during a meal is challenging, and so dinner time with all four of us can be a stressor. There have even been times when he had suggested we go out to eat, and I have declined because the thought of them sitting through a meal with him constantly correcting her was just too much for me. I know and understand his reason for wanting them to sit during dinner, and I would support it if it was something she could do and control, but she can’t. And while I know he knows that, I don’t think he has accepted it.
Because of each of our roles, him working full time, me part time, I am with the kids more. I deal with everything school related, all teacher interactions, IEP meetings etc. Her tutoring, her therapy, all me because he is at work. By the time the day is over and kids are in bed, I have no energy to fill him in on everything that’s going on. And so I know he doesn’t know every detail, and that gets compounded, and it saddens him because he really wants to be involved. He is an amazing father, involved in every way that he can be. He wants to be able to help her and would do anything in his power to do so.
Oh homework! School work in general is just more challenging. I don’t think it’s the actual work that’s hard for her, I think it’s the sitting while doing it that is the challenge. And I get it, you sit for 6 hours in school, then come home and need to sit for another hour to do work that supplements what you just spent 6 hours sitting and doing in school. It sucks honestly. There is only so much focus she can control in the day and by the time we sit for homework she is depleted.
She has asked me to do streaks of blue, red and purple, but it was always in a big chunk underneath her hair. She has been asking me for a while now to do some blonde highlights. I had been putting it off because her hair is so beautiful and I didn’t want to change it. She honestly just wore me down asking all the time. Towards the end she got antsy, so I let her have her iPad. She kept asking how much longer it was going to take, and if we were done yet. Once I finished foiling her hair, the color had to sit and process for about 20 min, and that was hard for her to wait for. In the end she was happy, but I wished I had made her blonder!
Edie has been asking us to do karate for a long time and we finally signed her up. After talking about it with a friend, who is a personal trainer (@marathonmanx Juan), he suggested we do Jiu Jitsu because it involves a lot of wrestling type moves, and is more physical than karate. The class that she goes to is a mixture of all different types of martial arts, and I can see already that the parts she enjoys the most are the one on one partner sparring/ 'wrestling'. I really feel like she needs a physical outlet, a way to focus all her energy that she has to keep under control all day for school, and I am hoping this helps her with that. I also love the discipline that martial arts teaches through physical movement. Focus and attention are hard for her even when she is doing something she is enjoying and loves. I could see moments where she was zoning out, her eyes would just glaze over, just for a quick moment. But she did great, and I am really proud of her!
This is the first year Edie is in an ICT (integrated co-teaching) class so every year prior we have focused on all the negatives, her fidgety behavior, her impulse control, her social issues, and of course her poor reading and writing. So, this is the first time that I actually looked forward to PTC. Edie's teachers this year are so amazing, and I truly feel they have her back 100%. Meeting with them and hearing their input and suggestions is really helpful. They are so optimistic and encouraging.
I am very involved with Edie's class, her school work, assignments, etc. Fritz is rarely able to attend class functions, or go to the school because of his work schedule. So when he does come, the kids are eager to show him what they are working on, and I know he feels the same. He is very nurturing with them, and really looks at everything they show him, and engages them with questions about their work. I think Edie was really happy to show him all that she had done.
During the meeting, edie's teachers were telling us about all her improvements. They said she rarely uses fidgets anymore, is a math super star, and has been making some progress with reading. We were so happy and grateful to them for all their hard work working with Edie. I think the biggest factor in all her improvements are her teachers. I think she finally feels safe and understood at school, and that has allowed her to focus on the actual school work, and not always be on the defensive like she was in years prior.
After a while, we asked to speak with the teachers privately and asked Edie to leave the room. We also wanted to discuss meds with them. We are considering putting Edie on medication specifically to help her with her focus and impulse control. I wanted to get the teachers feedback and ask them what they thought about it. They both said she could use help in these areas, and agreed that if the meds did work for her, it would make a big difference. We both have reservations about putting edie on meds. I am more open to it than Fritz. I just feel that if there is something out there that can help her, how can we not give it to her. He is worried that it will numb her and she will turn into a zombie, and I can totally understand that. We recently all met (virtually) with a therapist who I think put Fritz's mind at ease, and we all agreed to try the meds and go from there. Edie knows she will be starting medication and doesn't seem to have much of an opinion about it. I think it's too hard for her to really understand what it all means, but we made it clear that if she doesn't like the way she feels, she should tell us and we will make any and every modification to make sure she feels 100%.
Edie, age 9
Mateo is 13 months older than Edie and he is the easiest, sweetest kid. We worry that because Edie commands so much attention, he feels left out. I can’t tell if he does yet. We try our hardest to make sure he’s getting the same amount of attention. I have also noticed that we have different expectations for them, and I know that’s not fair to him. Because he is so ‘good’, when he acts out, it feels like a big deal.
He’s not a protective older brother. He lets his cousins and friends pick on her, which I get. He needs his space, his alone time, and she can be overbearing and attached to him. I think when he’s with friends and they aren’t the nicest to her, he really just doesn’t know what to do. We have talked about it in therapy, him and our therapist, about helping her when she’s in these kinds of situations. I know he hears it, and I want him to be there for her, but I also don’t want him to feel burdened. Sometimes, when her behavior is really out of control, she’s hard for me to stick up for, so I can only imagine for him!
So, quarantine has gone way better than I first anticipated. Edie began her meds right around the beginning of quarantine, and it has been a life saver. I anticipated long hard days of fighting to get her to do school work or read, or really do anything, but it has not been that way at all. Don't get me wrong, we have had many many hard moments, and it's not been fun at all, but considering where we started I am so impressed with how she has handled it. I attribute it all to her being on meds and them working for her. The hardest part of quarantine has been the social isolation. She doesn't have many friends, and the few that she does have, have a very hard time having Zoom playdates. Those fizzled out after the first few weeks, so she really has not had interactions with anyone besides us. I am really nervous for when we do re socialize, how she is going to be. The friendships and social issues were our biggest concern, and being isolated did not help.
Edie was supposed to go to summer camp and sleep away camp, which we were really excited about for her as an opportunity to make some new friends, but that's not happening this year (2020). I am grateful that she has her brother Mateo to play with, but the fighting between them occurs just as much as the playing.
As far as the meds, we have seen huge improvements, mainly in her impulsivity. She is impulsive with her body and her words, and I have seen improvement in both. The main side effects for us that we have seen are weight loss and not falling asleep at night. It's hard to know if she's not tired at bedtime because of the meds or because she's just been home all day and not nearly as active as usual. A few weeks ago we were upstate and were planning on going on a hike. The night before I made a conscious mental note to see how being out all day and active would affect her at bed time. Halfway through the hike, something was off. She was literally bouncing off the trees, talking a mile a minute, and just seemed all over. Even my husband, who hated the idea of her taking meds, asked me what the hell was going on with her. I asked her if she took her meds this morning, which she had done independently without me asking for weeks, and she said she forgot. It was the first time since starting the meds that she was off them (we do them 7 days a week) and we saw a huge difference. It completely confirmed to us that she benefits greatly from being on them. It was a blessing in disguise because it removed any doubt or concern my husband and I had about putting her on meds, and really helped us see how the meds do help her day to day.
The virtual therapy is going well, it's really more of a check every 3 months than therapy. We have taken a pause from her weekly therapy sessions because trying to do them over zoom just wasn't working. Edie just couldn't fully concentrate and what we were working on with her therapist were her social issues, and now because we are isolating, those issues are not relevant at the moment.
Before the lockdown, we were working on Edie's socialization with her peers. Finding a friend has been a real challenge for her and something I know she truly longs for. She sees my son with his best friend facetiming daily and I know she wishes she had someone to facetime with, but she doesn't. We have not podded up or really seen many other people during this time, so her socialization has basically stopped. It is the most heartbreaking part of this year for me, watching her wish she had just someone to play with or facetime. She is aware that other kids have had playdates or are in pods, but has not vocalized any of her feelings to me. I don't think she really can at the moment, but I do think it is affecting her and makes her sad when she thinks about it. There is not much we can do at the moment. Our close school friends are mostly isolating, so we do not have a pod cohort to join, which I feel terrible about for her. She is definitely happy to be in school, she goes in person 2 days a week, but it's not the same. The kids can't really play and don’t have any of the natural school interactions that they would have had before, so it's not a real school environment. I am nervous that this year has really stunted her social skills, and am really nervous for her to go back to a normal social situation. Next year she will be in 5th grade and then middle school, and those years have always been what I am most nervous about. Kids are more mature, girls begin to socialize differently, and I am really nervous for her honestly. I just need her to find one friend who gets her and understands her. She hasn't found that yet in school.