Diagnosis ADHD: Community and Labels (Part 2)

In my last post, I presented some information about ADHD and discussed how we came to pursue and accept that diagnosis in our son. If you missed that one, you might want to go back and read it first. I don’t know about you, but I had a lot of preconceived notions about ADHD that were completely wrong before I began reading books and listening to interviews from experts in the neuropsychological field.

Long story short, ADHD is a neurological disorder that is grossly misnamed (because “attention deficit” and “hyperactivity” are not the main or even most disruptive symptoms) that affects a large percentage of people (children and adults) in every walk of life, of all ages, on every continent, and in both genders.

Diagnosis ADHD

Today I want to address why pursuing a diagnosis or “label” of ADHD is important.

Understanding

One reason I believe pursuing a diagnosis of ADHD is important is so that you can fully understand what your child is going through. On the one hand, symptoms of ADHD can be confused with other disorders, and pursuing a diagnosis is going to help eliminate some other possible issues. For example, if you suspect your child has ADHD because of inattention, other possible disorders that could look like ADHD could include language or number disorders, anxiety, autism spectrum disorder, or depression. The treatment of these different disorders are quite specific, so a proper diagnosis (to be clear, this would come from a neuropsychologist) will ensure you are actually helping and not wasting your time or delaying the help your child needs.

On the other hand, if ADHD is a proper diagnosis for your child, you are going to want to dive and learn about it, especially as your child begins to hit the late elementary or early middle school age. Because our son is not outwardly hyperactive and quite intelligent, we did not know to pursue his diagnosis until 4th grade, and by that time he had already been struggling for at least a year with what I consider direct repercussions of ADHD (self-esteem issues, anxiety, loneliness, self-isolation).

Thankfully, there is one great place to start with a struggling child (no matter the eventual diagnosis), and that is counseling. A licensed counselor (or psychologist) is a great asset to have on your team as you are pursuing diagnoses and helping a child deal with feeling different. A counselor is both a mentor and safe adult for your child to depend upon as well as an expert who can help lead you to the right tests and tools. Not every adult in your circle is going to be supportive or helpful in your decision to pursue a diagnosis for your child — some because they are unfamiliar with neurological and mental health and others because they are not close enough to see that your child is struggling. A counselor is someone who can help you see the big picture of what resources are available for your child and will walk with your family through recovery.

I highly recommend (if possible) a counselor who is the same gender as your child and who actively works with children and adults (remember: you’re raising an adult, not a child). A good counselor will communicate well with the parents (so, easy to get a hold of via phone or email) and is someone your child looks forward to seeing (i.e. is a fun person to be around). We have had the most success with a counselor trained in cognitive behavior therapy. Increasingly, counseling is covered by health insurance, so you can choose someone compatible with your insurance if that is helpful.

Accommodation and Co-Occurring Diagnoses

Another reason pursuing a diagnosis of ADHD is important is so that you can provide your child with accomodations. Because ADHD is a neurological disorder, it is frequently accompanied by other disorders of the same kind. According to Understood.org (a very well researched resource), as many as 45% of children with ADHD have at least one co-occurring learning disability whereas only 5% of children without ADHD have a learning disability. The most prevalent co-occurring learning disability is that of “written expression” (dysgraphia – 65%) followed by struggles with reading (dyslexia — 32%) and math (dyscalculia — 30%). That is not to say that all children with ADHD will have these co-occurring issues, but these are definitely disorders that need to be considered. Needless to say, if your child has a learning disability, they need assistance, and a secondary diagnosis can help get you want you need — be that occupational therapy, an Individual Education Profile (for public school), assistive technology, or just patient and well-informed teachers (even you, homeschool mom!).

learning

Typical accommodations for ADHD fall under the category of helping with executive functioning — things like helping a child stay organized, giving them extra time to complete assignments or tests, giving a child fewer (or shorter) assignments, reducing distractions, seating them close to the whiteboard, teaching to multiple senses (verbal + visual, for example), giving them time cues, and so on. A more extensive list can be found here.

In addition to help with executive functioning assistance, children with ADHD desperately need their parents, caregivers, teachers, and even peers to understand their behavior. These kids have a heightened sense of emotions. Being neurologically different can be very frustrating, and being asked or expected to do a task you cannot do well or at all can make that worse. Additionally, these kids need immediate (not delayed) consequences (good or bad) because their sense of time is not the same as the neurotypical brain. For the ADHD brain, all time is now, or (if you’re like my son) all time is either now or waaaaaay off in the future to the point that it doesn’t matter.

Before I fully understood this, I would tell my close friend that my son does not respond to the normal parenting techniques. The threat of delayed punishment or privilege did not translate into behavior correction. If anything, it just muddied the water. For example, if he said something mean or negative to his brother, I used to say, “Please do not say that and apologize to your brother or you will not be allowed screen time this afternoon.” Rather than prompting an apology, my comment would prompt my son to negotiate or go on a diatribe about Minecraft. A much better way for me to handle the situation is to ask my son to please physically move himself away from his brother (preferably, come sit by me). I might say something like, “We do not say say mean things to our brothers. Come sit by me.” The punishment is having to relocate and shutting down the negative words towards his brother. It is immediate and definite. If for some reason I think he doesn’t know why he is being punished, I might say something like, “You are here because you were saying mean comments to your brother.”

This is still new ground for me, but I am considering creating something visual but inconspicuous to accompany his corrections — something that will show incremental infractions that add up to a larger punishment. The goal is that he has to understand he is being corrected, but it has to come without embarrassment. Often I have to correct him on something that is harder for him to control than other people, but at the same time he must be held to a civilized standard. Also, there are some single infractions that do warrant a complete loss of privileges (dessert, use of electronics, freedom to leave your bedroom, ability enjoy extra special activities, etc.), but I think it best to save those for repeated offenses or major disobedience. If you use the “big guns” for every act of disobedience, then you’ve got nothing left in your arsenal, so it’s better for me to punish small and immediate than large and delayed.

Community

This is really for you, mom (or dad). One of the best reasons for you to pursue a diagnosis for your child is so that you can enjoy the support of community. Raising a child with a neurological disorder can be very isolating if everyone in your circle is raising neurotypical children. Once you have the diagnosis (or even a pretty good inkling of what’s going on), you will find yourself gravitating to other parents going through a similar issue. This is natural and good for you.

For one thing, those parents already have an understanding of what your child is dealing with and will perhaps raise their eyebrows fewer times at your child’s behavior (your child desperately wants to fit in, so fewer raised eyebrows is good). When parents of neurotypical kids meet your ADHD child for the first time, it reminds me of a when a mom of all girls is compared to a mom of all boys.

Having a child with a neurological disorder can be a situation from which everyone in the family can learn empathy and patience in a similar way as family members can learn these lessons from a family member with a physical disability. Siblings of a child with a physical disability will often quite naturally help, support, and defend their brother or sister. Would anyone ask for a disability just to teach this lesson? No, of course not. But, can we be shaped and molded by adversity? Yes. Definitely.

Another little note I’d like to point out about community is that neurological disorders spread like wildfire within a family tree — not that they are contagious, but they are genetic, meaning (unless your child’s disorder is cause by a brain injury) if your child has a neurological disorder the chances are great that one or both parents/grandparents, aunts/uncles, and siblings will also have a neurological disorder. In generations past, the diagnosis would have been called something else or perhaps the symptoms were dealt with in other ways (i.e. alcoholism or drugs, dropping out of school, self-isolation). My point being, once a child is diagnosed and you are in the thick of dealing with it, other family members might come to you for advice or you might begin to see a similar pattern in another of your own children.

Community here is key. Not only can we learn from each other, but we can also support each other and share resources. No one needs to start this journey from square one, and often a diagnosis is what can get your in touch with others on the same path. Reach out to others for support, tell people what you need, learn to advocate for your child, and don’t try to walk alone.

Until next time, I’m reading:

Novels:

Moderately challenging books:

Stiff books:

Diana

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s