Welcome, Mamma Crew, to another chaotic, exciting, but always beautiful day of an older mom like you!
So, in recognition of ADHD awareness month, I thought I would share some of my family’s challenges with ADHD. So, this month I’m going to focus on our ADHD journey.
Now, if you’ve heard some of my older episodes, you’ve learned that we knew Andy, one of my twin daughters, would probably have ADHD since she was in the NICU. The neonatologist told us that she had had oxygen too close to her brain for too long, and it was a strong possibility that she would have ADHD.
At the time, it didn’t mean anything to me. Even when Andy started growing up, and we began to see some of the challenges she faced, I was not overwhelmed. I was confident that I could help her. I was optimistic that we as a family would be able to help her move forward.
But around the time that Andy started kindergarten, we realized that this would be more challenging than we had understood. Even though her teachers knew that she was extremely hyperactive and inattentive, we couldn’t get our pediatrician to help. At that time, we were told that a child could not be diagnosed with ADHD until they turned six, and our pediatrician didn’t feel qualified to make that diagnosis.
So, here we were; Andy’s kindergarten teacher thought she had ADHD, her pediatrician thought she had ADHD, and we were told that she would probably have ADHD since she was in the NICU. We could see she had it, but there was nothing we could do about it.
And to be honest with you, it got to the point where I felt desperate for Andy. She was struggling to learn. She was constantly screaming, and she would just get really close to another child and just scream in their face, and she couldn’t keep her hands to herself. So, we were facing a lot of challenges, and we were trying to work through them. We really were. Finally, when she was about to turn six, our pediatrician referred us to Beaumont Children’s Hospital Center for Human Development. We were able to have Andy tested.
Now, this was a real challenge because all of the testing required about $5,000. At the time, we were struggling financially. We were recovering financially from a difficult pregnancy. I had only finished my Ph.D. four years earlier, and my husband was just starting a new business. So, $5,000 was a lot of money. Our insurance didn’t cover any of it, even though I had excellent insurance through my employer.
Additionally, the testing place wasn’t around the corner. It was four or five hours away from our home. It meant that in addition to paying for the testing, we also had to pay for the gas to get there. We had to stay in a hotel room because the testing took over three days. All the food and other expenses that it entailed for our family to travel and stay away from home. But of course, we felt that it was worth it.
So, the testing started. It did take three days, and our child had the opportunity to work with a pediatric neurologist, a pediatric psychologist, a pediatric behaviorist, and a developmental pediatrician. After three days of testing, we returned home and had to wait several weeks to get the results. And guess what? My child has attention deficit disorder. Wow… Like we didn’t already know this. Right?
We did not know that there isn’t just one type of ADHD; there are several types. The three large umbrellas are: predominantly inattentive, where the child is not able to attend. They have a difficult time concentrating.
They have a difficult time focusing, but they are not necessarily hyperactive. Predominantly hyperactive/impulsive. Here, the child can be highly hyperactive and impulsive. And then, of course, there’s combined, which means you get a mix of inattentive symptoms and a mix of hyperactive-impulsive behaviors.
And, of course, our child is in the combined category. And when it comes to the ADHD spectrum, she’s not on the mild end. She’s not in the moderate. She’s in the severe range. She is extremely impulsive and hyperactive. She just pings off the walls. She’s also extremely creative, just one of the most amazingly creative kids and an incredible mathematician.
So, we get this, and as I said, Andy has a little bit of both categories. She really has a difficult time focusing or attending to things that she’s not particularly interested in. She can be very careless with details. And often, for example, as I said, she’s an excellent mathematician, but she will make basic arithmetic mistakes.
Andy really has a lot of problems staying focused on a task, even if it’s playing. You know, other kids can be playing a specific game. But she’ll start the game, and she’ll get distracted, play something different, annoy the kids, because well, she’s now over here. They’re still having fun doing whatever it is that they started on. So, that’s a real challenge.
One of the biggest challenges that I have with my daughter is that she appears not to listen even when speaking to her directly. It’s like it goes in one ear and out the other, and you’re going to say, “This is normal for kids.” No. This happens all of the time. It happens with Andy’s siblings. It happens with her friends. It happens with us, her parents, her teachers—anybody that’s worked with her.
And of course, my daughter has a tremendously challenging time following through with instructions or finishing something as basic as schoolwork (she is in the gifted range) or the most simplistic chores. She has trouble organizing tasks and activities. She avoids any tasks that she dislikes or requires focus mental effort. She will lose items, even items that she loves and that she cares for. She is extremely easily distracted. She forgets to do daily activities. She will talk your ear off incessantly about whatever it is that she’s interested in. When she’s in school, she blurts out answers, interrupting the person that’s asking the question, interrupting the person trying to ask a question. It’s just very, very challenging. And, of course, she has difficulty waiting for her turn. She’s constantly interrupting others, getting their personal space, interrupting conversations, games, activities. So, this proves to be a real challenge for people, especially her peers. Kids don’t have a lot of patience for this kind of behavior, and they can be very unkind.
Just recently, someone said to my child, “You’re such an ass. Why can’t you just understand how we feel about this?”
And of course, Andy came to me, and she was distraught. And she said, “Mom. I swear I tried so hard. I don’t know why I can’t do this.”
Yes, my child also has a difficult time understanding social cues. She has an incredibly difficult time with this. She doesn’t understand sarcasm. I’m going to say about 90% of the time, it flies over her head. She has no understanding of jokes, even if it’s a light-hearted joke. She will have difficulty comprehending it or not being hurt if she’s the butt of the joke, even if it’s just a friendly joke.
And, of course, Andy has this incredible ability to hyper-focus on things that she enjoys. Now, you would think that this is a good thing. But it’s actually not because she will fixate on something to the exclusion of everything in her life—eating, family, friends that she has been able to make and has been working hard to keep, schoolwork, chores.
For several years, it was really a struggle with Andy because she wanted to be Spider-Man. No, she didn’t want to be an actor playing Spider-Man. She wanted to be Spider-Man, and she was constantly talking about building her underground bunker and creating web fluid. We were worried she would hurt herself because she was climbing up on the bed and the couch. It was a challenge between seeing her happy enjoying something and getting her to do the things she needed to do. It was hard to break that hyper-focus so she could socialize with her peers. It’s just an incredible challenge.
And then, of course, when I thought it couldn’t get any worse. Andy became obsessed with FNAF, Five Nights at Freedy’s, a game where somebody kills all of these kids. My daughter was very empathetic towards the killer, which really put everybody off. She was constantly defending the killer. I was a little bit disturbed by it. So, I finally sat down with her and asked, “Explain to me why Michael Afton is just… Why do you think that people should be more understanding of his situation?”
And that day, Andy just absolutely broke my heart because she said, “Mom, what if he couldn’t help it? There are so many things that I tried to help, Mom and I just… I can’t. I can’t help myself. You know, I can’t help myself from smacking my sister. I can’t help myself from blurting the answers. What if he couldn’t help himself?” It was so hard not to burst into tears. So hard! Andy added, “You know, what if Michael had terrible parents? What if society created its own monster? Shouldn’t we do something about a society that allows parents to turn a child into a monster?”
It was such a thoughtful and compassionate point of view from a child who doesn’t receive a lot of compassion from her peers.
One of the other issues with the ADHD test was that the testing site could not recommend a doctor specifically dealing with ADHD. Not just because we lived in an area that didn’t have a specialist, but they didn’t even recommend a doctor outside of our area. They basically said, “Go to your pediatrician and talk to them about medication.”
The testing site did suggest some behavioral therapy which was not available anywhere near our area. We would have had to travel five hours each way. So that didn’t work out. And that was part of the reason why we decided to move away from that specific town. We needed to be in a place that had more resources.
Additionally, once the testing site told us about the three different umbrella types for ADHD. They didn’t give us any additional information. They made it sound like the challenges she was facing were normal for kids. But it’s not normal. It’s not normal for your child to be picked on. It’s not normal for your child to feel isolated. It’s not normal for your child to be excluded. It’s not normal for your child to have a horrendous time making or keeping friends.
The testing site never explained the diversity of comorbidities, meaning other diseases or other syndromes or other challenges attached to ADHD. You know, children that have ADHD are more likely to be OCD. They are more likely to have very strong autistic tendencies.
For Andy, one of the biggest challenges is food texture. If something feels wrong in her mouth, she just can’t eat it. When she was a toddler, I had to buy plates that separated the food because the food couldn’t touch one another. So, the corn couldn’t touch the chicken. The chicken couldn’t touch the dessert. I mean, this was like a massive meltdown if these things collided.
To this day, my daughter has difficulty eating food that has more than a couple of ingredients. You know, like chicken fried rice. She has a tough time with it. She likes chicken fried rice. But despite my absolute frustration, she will separate the vegetables. Then she’ll separate them into different piles, and she will separate the egg. She’ll divide the chicken. She’ll separate the rice. Does this take a godly amount of time? Yes. Is it problematic when we’re in a hurry, or when there are other things we need to do? Absolutely. But we also understand that she can’t help herself. We have tried to work with her on that. Like anything that has to do with children, we’ve learned to pick our battles, and that’s not a hill that we’re willing to lose the war on.
Most certainly, one of the things that would have really helped us would have been if there were more developmental pediatricians. I’m not going to say just near us because in Florida, we have a condo in the Orlando area, and we have access to an excellent Children’s Hospital. There are many doctors in the area, and yes, you can find developmental pediatricians there, but they’re packed. I mean, they’re absolutely packed. We’ve never been able to get an appointment. We’ve had a difficult time even finding a psychiatrist that works with children. And we had a hell of a time finding a good psychologist to help us and help her. Fortunately, now we have, but that was a real challenge. So, finding adequate medical personnel is very difficult.
An ADHD coach. Believe it or not, there are coaches for parents, and there are coaches for kids. I wish I had known that. I could have really used one to help me navigate the original challenges that we faced with ADHD.
And of course, it would have helped if the testing doctors had explained the essential need in understanding girls with ADHD. They have entirely different challenges than the boys. And, of course, those challenges just really explode during adolescence.
Next week, I will be talking about the lack of support for families who face serious challenges with ADHD. Even when you find that personnel, just the absolute need to advocate for your child and educate yourself so that you can help your child appropriately.
If you’re new to the show, please don’t forget to check out our previous episodes. There’s a lot of good content out there! If you found this episode helpful, please download and subscribe so we can continue to stay in touch with each other.
And finally, don’t forget to check us out on Facebook—Older Moms Blog support group. It’s just an amazing tool. Even as my kids have gotten older, I still need support, and I also find that these ladies are very compassionate and capable of providing it, and I want to provide it for moms like me.
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