215: ADHD: Lack of Support in Our Communities

by | Oct 21, 2021 | Mama Thursday

Welcome, Mamma Crew, to another chaotic, exciting, but always beautiful day of an older mom like you!

So, October! I love October because I love Halloween! And if you see me wear this blouse too many times this month is because I absolutely love it! Isn’t it cute? I love the candy corn. I love the orange and the bats, and I’ll put a link below so you can find it on Amazon if you decide to like it too. 

So, what are we going to talk about today on this ADHD Awareness Month? Today, we will talk about the lack of support that we will find in our communities and learn to become advocates.

Before I continue, I should say that there might be some adult language when I express my frustrations in this episode. So I just wanted to give you a heads up if you’re listening to it and your kiddos are around. 

So, despite spending so much money to get the testing and the diagnosis that we already knew, the testing center didn’t really provide any direction. They didn’t point me to any ADHD doctors near me. They didn’t talk to me about ADHD coaching for parents or kids. I wouldn’t find out about ADHD coaching until years later. In all fairness, ADHD coaching is relatively new, but it has become more prominent in the last few years. 

Basically, coaching is an intervention that complements medication or non-pharmacological alternatives. As a specialty within our broader field, ADHD coaching is a practical intervention. It specifically targets the core impairments of ADHD, such as planning, time management, goal setting, organization, and problem-solving. In our house, time management and organization are big challenges.

However, predominantly, college students and adults are the ones that use coaching. We are starting to see more programs developed for adolescents with ADHD, in part because they’re making that transition to independence. So, lately, I have seen a lot of ads for parents with children who have ADHD that might be interested in coaching. There are also individual classes. If you haven’t checked out Outschool.com and have a child with ADHD, there are some excellent choices. My daughter recently took a couple of classes, “your ADHD brain works” and “how to use ADHD to your advantage.” And we are considering enrolling her in the ADHD support group that means once a week.

Now, given that I often heard teachers and parents talk about the impact of ADHD in the classroom. We are seeing an increasing number of neurodivergent challenged kids in the classroom. I didn’t find the support that I expected from the school system. Even today, about one in three students with ADHD has received no school-based interventions, and typically two out of three have no classroom management. This is sadly disappointing, but schools simply are not meeting the needs of our special needs children. 

So, not surprisingly, about one in five students with ADHD experienced significant academic and social impairment. It’s very sad, but the kids in most need do not get appropriate services at our schools. Now, I thought, okay, so the school system is overwhelmed, or teachers are overworked. There are so many challenges with the school system, but I will get what I need from our pediatrician. Right?

Wrong! Our pediatrician had graduated from one of the best schools in the country and had done really excellent and had very good residencies. She had no idea how to handle ADHD other than medication. Even with the medication, she wasn’t helpful at all. It was an eeny-meeny-miny-mo kind of approach, so there was no help there either. And let me tell you, this was effin frustrating! Because you have your child, who you know needs the help, and you just can’t find it. 

Now, before you say, “You’ve lived in a very isolated area.” 

I’m going to tell you that getting the resources to meet my child’s needs was very difficult, even when we moved to a metropolitan area. This is in part because the resources are very limited. There are a lot of us competing for those resources.

So, in this world of finite resources, meaning limited resources, we really need to learn to advocate on behalf of our children. Now, I have to tell you that this was challenging for me because I’m an introvert, and I am the child of an alcoholic. I learned to keep my mouth shut very early on in my life. Now, I knew that I didn’t want to be anything like my mother, who could never advocate for us, but I also knew that I was really going to be challenged in this area. 

So what exactly does advocating entail? Well, it just means speaking up. Isn’t that amazing? And that can be pretty hard, though! You speak up when something is not comfortable. You learn to be louder than the squeaky wheel in the room. You also learn to advocate quietly when that approach works better. Whatever works is what you do to get your child what they need.

And under no circumstances do you ever believe that the expert knows better? Teachers are going to tell you that they have more experience than you do dealing with ADHD. There’s no question about that. But no one knows your child better than you, and ADHD is a syndrome that impacts every child differently. Hence, it is so challenging. 

Doctors are going to tell you that they know better than you. But let me tell you. Often you will be more informed than your child’s doctor. So remember, it is your place to get involved in your children’s education, in your child’s care. You are not overstepping boundaries. It’s your child, you have a right to be concerned, and you have a right to speak up. It’s not disrespectful to share your concerns. 

When I say speak up, by no means do I mean to be nasty to the doctor, although sometimes that’s called for. But for the most part, just speak your opinions and don’t allow them to step over you because they will do that. I can’t tell you the number of times that I’ve been to a doctor’s office, and he will say to me, “Well… You don’t really understand how this works.”

And then I’ll say, “Well… I have a Ph.D. in public health. I think I can figure it out.” 

And as soon as they hear that, they stop being condescending. Suddenly, doctors are far more careful about what they will say to me and how they will approach me. So, stand your ground. 

The bottom line is, even when your child’s teacher might not be happy that you’re approaching them because they have a lot going on. All teachers want their students to do well, and most teachers fall in love with the kids. I was a college professor, and trust me. I became so emotionally invested in my students’ success or failures. So certainly working with children, this investment is far greater.

Also, keep in mind that the teacher, the doctor, whoever it is, they’re dealing with forty kids, fifty kids, a hundred kids. It depends on the situation you’re dealing with and their specific challenges. Don’t be afraid to ask these people questions. In fact, I encourage you to be prepared when you go into any of these meetings with tons of questions. It doesn’t mean that you’re going to ask them all. It means you will have them there, and you can number them based on priority. Understand that if you have fifty questions clearly, they’re not all going to be answered in one appointment. Maybe pick the top five and then next time pick the next top five and so on, depending on your priorities.

I cannot stress this next step enough. Understand your child’s diagnosis. You will be spending a lot of time educating others, making the teacher part of your team, making your pediatrician part of your team. You will also be educating people who do not understand your child’s challenges because they are invisible. So you really need to understand your child’s diagnosis. 

I Wouldn’t Trade My Amazing ADHD Superhero for Anything in the World! I’ll Support Her and Love Her For Life!

 

But when you go researching the internet, you also need to understand the difference between opinion, the junk that people put out there, and reputable sources. Just because someone has an opinion and puts it on the internet does not make it accurate. I see this all of the time! Good sources for you for this situation are the Mayo Clinic, children’s hospitals, any children’s hospitals. In our area, there are numerous children’s hospitals that advocate for that specific syndrome or disease. There’s a great magazine called ADDitude. There’s CHADD. There’s the Tourettes Associations, the ADHD Association. There might be chapters near your area. Those chapters will have tons of reputable information on your child’s diagnosis. Take advantage of it. And a lot of it, by the way, it’s going to be free of charge.

Learn about medications. The first medication that my child was prescribed was Adderall, and the pediatrician said, “We’ll just try it and see how it goes.” 

And at this point, I was relatively trusting. Three days of mystery was all it took. I was done! This was horrible! And when I went in to talk to her, she was like, “Well, there’s no other options.”

Uhm…No! That was certainly not the case. And there’s plenty of differences even between stimulant medications and non-stimulants. There is a wealth of options. There’s also a big difference between time-release medication and fast-acting medication. You need to find out what you believe will be suitable for your child, for your family. Figure it out and work with your doctor. Don’t let your doctor just tell you, “Oh… There’s no options,” because that’s never true. There are always options. We may not like the options there are, but there are always options. 

When you know you’re going to be talking to your doctor about medications, research the medications and be ready with your questions. And anytime you start your child on a new medication, keep a journal, not just of the doses but your child’s behavior. I’ve had to learn that lesson the hard way, and I believe I talked about that in one episode this month.

Another thing that I found very successful for our family was creating a ladder of our child’s challenges. So, I basically draw a ladder with five rungs. And I never add more than five because I’m looking at our top five priorities, and in each rung, I write one problem that I need to help my child with or that my child feels she needs help with. This part is very important. Make your child your co-pilot. A lot of parents take the attitude that “Well, my child’s too young, and I’m going to tell them what to do.”

That stops working pretty quickly. Because ultimately, our goal as parents is to have our children grow into independent, self-sufficient individuals. We can’t expect them to go from being completely dependent on us to be independent of us. So it’s important to have your child join you in this journey because eventually, you’re going to be turning that wheel over to your child. The wheel of their life.  

And here is another challenging part of ADHD, and learning to advocate for your child is understanding that the challenges will change. We were holding pretty steady. We were very happy, and then adolescence hit! And let me tell you, this is a hormone roller coaster under the best of circumstances. This is a loop-the-loop roller coaster that goes backward and forwards when you have a child with ADHD. And understanding girls with ADHD becomes very important because the suicide rates for girls were significantly higher than boys at this stage, or at least that’s what I found in the studies I looked at. It was consistent across the board. Those female hormones, progesterone, and estrogen really cause a lot of trials and tribulations during adolescence for our ADHD daughters. 

So, I talked about making them your co-pilot and understanding that you will eventually turn in the wheel. Part of learning to advocate for your child is learning to help your child advocate for themselves. Self-advocacy takes practice. It’s challenging and even more challenging during the adolescent years. We are so insecure about who we are and how we fit in this world. So, it’s definitely a habit that our children need to learn. Frankly, it’s a habit that we should be teaching earlier rather than later. 

Teaching advocacy becomes more challenging by the time we hit adolescence because our children are less willing to listen to us. They’re individuating from us, separating from us. Still, at the same time, this is when it becomes more important for them to practice this habit because, in a few years, they’re going to be on their own. This is a really good time to work with an ADHD professional—a therapist, a counselor, a coach to help prepare your child for independence. Some of the things that you want the coach to teach your child or to reinforce in your child, or give your child skillsets for are: learning to speak up for themselves, making their own decisions about their lives, learning to get information both about things that interest them and their medical care, finding support for their life journey, understanding their rights, responsibilities, accountability is very important because ultimately their life belongs to them.

Of course, always reinforce listening, learning, problem-solving, reaching out to others when you need help. That can be very challenging for all of us. This is even more so for ADHD children who are going faster than your average person, mentally, emotionally, and often miss important social cues. 

And ultimately, learning about self-determination. You have to be accountable, responsible for your own choices in life. We must teach our children that they’re going to go out into a bigger world and have to find their place in it.

This is very important. If there is a support group in your area, join it. This is hard for me to say as an introvert. Still, even if you don’t spend a lot of time sharing or talking, you’ll feel less lonely, less isolated, and you’ll have a group of people that do not judge you. That is so important for both our children and us. Being part of a group that understands our challenges, triumphs, and joys really reduces depression, anxiety, fatigue. There are also social opportunities to be with people who have common challenges, shared interests, and a common perspective of life. As I said, you’ll feel less lonely, this isolated, judged, reduction of depression, anxiety, fatigue, and lots of understanding, compassion, and joy. 

I would love, love, love to tell you that I have this one all figured out and that I can help you get it perfect. I wish I could tell you it gets easier with time. I haven’t figured it all out. It hasn’t gotten easier with time. It’s just different with time. But the other day, when I was facing one of those big challenges with my child, my ADHD superhero, and I had no idea how to help her, I was so frustrated… I couldn’t find the answer I needed to find, and I needed to find it quickly. For a moment, my brain went to, “see if you hadn’t had to have,” and that’s when my brain stopped. The word “children” never materialize. I can’t picture my life without my ADHD, OCD, Tourettes superhero. She doesn’t understand this right now because she’s an adolescent, but she is amazing. She’s compassionate. She’s goofy! She’s a loyal, faithful friend. She is incredibly creative and artistic. I wouldn’t trade my life with her for anything in the world! All the challenges I’ve lived with her have been worth it!  I know the challenges she will face in the future as much as she allows me to be part of it; I will welcome it because I love my ADHD daughter. I will never think that is anything less than amazing!

Hey, if you’re interested in homeschooling your ADHD child or other special needs child, please check out my homeschooling podcast! You’ll find a lot of good information there. Or, if you have just started homeschooling or are interested in homeschooling, please check it out at Homeschooling with Dr. B.com.

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And if you’d like this lovely shirt that I found on Amazon, I’ll put the link below. So, for links and resources, please visit our website! If you share an imperfect journey to motherhood, welcome to the Mamma Crew! Till next week! Embrace the joys of imperfection! Toodles!

 

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Dr B.

I began my journey into motherhood at the age of 40 when I became a mother of twins! Today I am a mother of 4! Being an older mom might be a growing trend, but we are still a minority with our own unique blessings and challenges. Join me in this journey! To contact me directly, email me at oldermoms@entrepreneurialdreamers.com