ADHD

“ADHD is the most poorly-named affliction ever. Like ‘Hi, do you have a profound physical inability to accomplish your goals specifically because they’re your goals and also the thought of your friends not liking you makes you want to die? You may have Trouble Sitting Still Disorder.’” Premed with ADHD 

This made me chuckle. It is a confusing diagnosis for sure. It’s very similar to the autism saying: “If you’ve met one person with autism, you’ve met one person with autism.” No two people or diagnoses are alike.

The CDC defines ADHD this way:

“… one of the most common neurodevelopmental disorders of childhood. It is usually first diagnosed in childhood and often lasts into adulthood. Children with ADHD may have trouble paying attention, controlling impulsive behaviors (may act without thinking about what the result will be), or be overly active.”

It’s normal for kids to be easily distracted, restless or impulsive. That doesn’t merit an automatic diagnosis of ADHD. KidsHealth.org points out that ADHD is a medical condition with differences in brain activity and development, making it harder for these kids to sit still and so on.

Hubs and I used to be very opinionated about parenting and conditions like ADHD, feeling like we would know more and do better if we in those parents’ shoes. Maybe those parents just want to drug their kids because they are active… <sigh> We had no clue what we were talking about.

Years later, I’m a parent of two children with medical and psychological diagnoses of ADHD. Both boys struggle, but in different ways, and they are both medicated, but with different medications. Again, no two diagnoses are the same.

ADHD is separated into different categories: Impulsive, Hyperactive, Inattentive, or Combination. (Again, a great definition of these was found on KidsHealth.org) E, was first diagnosed with ADHD when he was 7, prior to his autism diagnosis. His ADHD is a combination: Inattentive/Impulsive with a little Hyperactivity. He struggles to follow multi-step directions, procrastinates, is absent-minded, and often loses track of things (Inattentive). Without his medication he is almost wild. He acts without thinking, is over-emotional in his reactions and, many times, he hits or pushes when playing and may hurt someone but, “wasn’t meaning to”. When he was younger, he was a bit of a risk taker, climbing things and unaware of dangers like being cautious of cars in a parking lot and such (Impulsive). He will also interrupt conversations, tell others how to play their video games, talks excessively, and fidgets constantly (Hyperactivity).

Now C, also diagnosed with ADHD before his autism diagnosis, also has a combination type, but it’s very different, being more Inattentive/Hyperactive with a little Impulsivity. One of the biggest issues we deal with is his constant feeling of boredom. Very few things keep his attention and he wants to be entertained all the time; he seems unable to entertain himself and this is very hard on the family (Inattentive). While he is less on the move now, he was the kid that never stopped moving (Hyperactive). He is still minimally aware of what’s going on around him and often interrupts conversations or is unsafe in parking lots and so on (Impulsive).

So, while each boy has their differences, they both deal with similar issues and have multiple comorbidities. We made the choice medicate them in order to help manage some of the side effects of their brain chemistry differences, to help them be more successful in their lives. In moments of clarity, they used to be so frustrated with themselves, and feel so down on themselves, regretting how they acted earlier, saying that they don’t know why they acted that way, and that they must be bad people. Now, with appropriate medication and therapy, though they still struggle with their issues, they are less intense and easier to deal with, not only for us as parents, but more importantly for them personally. They are not drugged-out zombies who sleep all day or do everything we say. The medication simply takes the intensity off of their ADHD, letting their true personalities shine through. They are much happier with themselves, and the family is, as a whole, too.

Before I became a parent, I had strong opinions but, over many years with many difficult choices, I now have new, more realistic and educated opinions. Choosing to medicate your children is a very tough decision for parents. You doubt yourself. You worry that about doing the right thing. You worry what others might think of your choice. Until, one day, you don’t. At some point, you realize that it doesn’t matter what you did or didn’t choose to do. It doesn’t matter what others think. All that matters is that you do what you feel is best for your own children, whom you know best. You no longer judge other parents for their choices because you realize that they are likely doing their best, just like you are for your kids. Each new day brings new challenges. You learn to think differently and keep going.

“You need to give what’s best in you a chance to grow with the right gardener, one who see that you’re a special plant, not a weed.” – Ned Hallowell

 

Defeat?

Today is beautiful. I am outside, enjoying the weather and yet, I’m fighting feelings of defeat. This morning we had our third visit with the psychologist who has recently begun working with C. We have been waiting several months to see this doctor, as is common with most of the pediatric specialists our kiddos need to see.

I know there are no quick fixes for what he is dealing with, and that this is a marathon and not a sprint, but I guess I let myself get my hopes up. I was under the impression that this new doctor would, not only be the one who would be able to help C with his behavioral issues that are connected to his gut issues, but also help with the other behavioral issues he deals that are connected to his ODD and anxiety. Unfortunately, this doctor only works with the mind/gut connection.

We had our first meeting with her last week. After filling her in on all that we were hoping to accomplish, she basically told us that she felt that we’d be better off seeing a different psychologist to focus on the ODD, anxiety and other issues before treating the gut issues. Though I’m terribly disappointed, I understand her point. If he is defiant and oppositional towards the suggested treatments, then we will be at a standstill. He must be cooperative for the therapies to work. However, she’s still willing to see us for a time and see how it goes.

For the second appointment, C met her for the first time but spent most of the one-hour session with his face buried in my lap or in a pillow on the couch, and then went out and sat in the hallway with my phone while I finished the appointment. Not really a rousing success. We did, however, come up with an initial plan.

First, C needs to wear underwear during the day and, second, practice sitting ‘properly’ three times a day. The underwear is a tough one simply due to habit. C hates being dirty in any way and yet hates bathing. We have tried having him wear regular underwear before. It becomes an issue though because he doesn’t feel the urge to go, then he leaks through the underwear into his clothing– especially when we are giving him stool softeners and laxatives. He is, understandably, hesitant to return to this situation. Despite that though, he has willingly gone along with this change. We’ve set the bathroom up with plenty of clean underwear for him and a special bin for his soiled clothing. The reward for telling us each time he notices that he needs to be cleaned up is a sticker on a chart and a reward after a certain number of stickers. For now, he is still allowed pullups at night. We are not ready to fight that battle yet.

Sitting properly means sitting up straight (rather than slouched over with his head on his knees) and using the ‘Squatty Potty’ Stool (rather than letting his feet hang). This sounds simple, and it is, in concept. But C has a hard time sitting up straight on the toilet, saying that it makes his legs hurt. With his sensory issues, this ‘hurt’ may simply be discomfort because he is not used to the position, or it could actually be pain. We don’t know and he can’t find a way to describe it other than it hurts. For now, the sitting position is our big hurdle. We have previously provided toilet seat covers and cushions to ease his discomfort, but he still won’t sit properly. We are even considering buying a new toilet seat just to see if the shape makes a difference. His anticipating that it will ‘hurt’ when he sits leads to anxiety which makes him tense; being tense is not conducive to our goal. So, between having to convince him to sit properly and his resisting, this stage may take a while to accomplish.

Meanwhile, we still don’t have definite answers to his lack of feeling urgency other than that his intestines are so stretched out that the nerves aren’t firing the proper messages, if at all. The goal of these therapies is to heal and shrink his gut back to normal, yet that won’t happen until he can have regular movements. Not being able to poop regularly causes things to back up and the gut to stretch and the cycle continues. I feel like we are in a holding pattern. We keep getting the same ineffective advice and remain in the same situation. At some point, something must change.

(I feel like I need to point out to various readers that yes, we’ve tried removing gluten from his diet. We limit sugar and dairy. We increased his fiber intake. We even tried essential oils. There are some situations that must be dealt with using modern medicine. This is one of those times.)

So, I am defeated today. I want to throw in the towel. I want to run away and not have to face these tough decisions anymore, but I won’t. I will fix myself a grownup beverage and sit in the sun on my deck. I will pretend for a short time that I’m somewhere free of worry. Then, I will step back into reality and try again. I will go to the next appointment with my head held high, knowing that we are doing everything in our power to help our child, and I will fight for something new to be tried.

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