This entry was written last month. Because of the strong emotions attached to it, it’s been hard to edit. My apologies.
Mr. C has been dealing with so many issues that I don’t know where to begin listing them. We have suspected for quite some time that he is dealing with attention deficit issues of some sort. I lean towards ADHD but I’m perfectly willing to accept an alternative diagnosis. All I know is that this kid needs help!
I’ve done my research and have read that the chances of having a second child with ASD (especially if it’s a boy) range anywhere from 5-15% greater if you already have a child on the spectrum. I’ve researched the symptoms of various challenges and everything I’ve read points to this kid having ADHD, Sensory Processing issues and probably more. When E started seeing a therapist, C and I would hang out in the waiting room. Occasionally, the therapist would spend a few minutes interacting with C. After just a few visits of seeing him for mere minutes, she identified him as 2E child.
Twice Exceptional is defined thus:
“The term twice exceptional, often abbreviated as 2e, has only recently entered educators’ lexicon and refers to intellectually gifted children who have some form of disability. These children are considered exceptional both because of their intellectual gifts and because of their special needs.
A 2e child usually refers to a child who, alongside being considered intellectually above average, is formally diagnosed with one or more disabilities. The disabilities are varied: dyslexia, visual or auditory processing disorder, obsessive-compulsive disorder, sensory processing disorder, autism, Asperger syndrome, Tourette Syndrome, or any other disability interfering with the student’s ability to learn effectively in a traditional environment. The child might have a diagnosis of attention deficit hyperactivity disorder, or diagnoses of anxiety or depression. ”
For years, I have been watching C for signs of “issues,” always knowing that he was smart but probably delayed in some way. E is a 2E kid who deals with ASD, ODD, ADHD, SPD and anxiety/depression. C has been evaluated for autism twice and, while he does have a few red flags, it’s not enough to diagnose him as autistic.
Last year, after the doctors who were evaluating C for autism decided that he did not meet the criteria, we were given alternatives for evaluation. But, the referrals never came though and we were on our own to get them. We took C to E’s special doctor. We had been working with a doctor for some time to manage E’s meds and ASD. This doctor has been amazing for him. Anyone who asked me about who we saw would be sung his praises. I mean seriously, this guy has made that much of a difference for us. So much so, that we often joke that E is now our “easy” child.
He did so much good for E, he’s bound to help us with C, right?
In the spring, we had C evaluated by this doctor, and he didn’t feel that C had ADHD or any real issues other than behavioral. He mentioned the possibility of ODD but felt that it may be learned behavior from E. He recommended family group therapy as well as individual therapy for C each week. We were that told he couldn’t help us until the defiance issues were dealt with. So, we followed his suggestion. We arranged family and individual therapies. We made major adjustments at home in an attempt to modify the undesirable characteristics. Things improved overall in our home life but, he was still having issues. Often, he couldn’t make decisions, wouldn’t answer questions because he couldn’t get the words out, and so on. So, more individual therapy, and more frustrating days fighting with him about everything.
C seems to never engage in a project. He is constantly bored. His therapist described it as a pervasive dissatisfaction and negativity with life. It’s almost as if he is unable to engage in something long enough to decide if he enjoys it. Even everyday decisions like picking which shirt to wear or what food to eat becomes astoundingly difficult.
We tried charts with limited choices, bought specific clothing… basically we did everything that was suggested. Then in October, we got to the point of desperation. He was miserable and we were too. The house seemed to be in constant turmoil. No one was happy. I took a stand and said enough was enough. It was time for a change. So, I took C to our local family doctor and asked for a trial of ADHD medication. I provided proof of why we thought it was necessary and he readily agreed with us and provided a prescription.
Within 24 hours, we saw improvement. C was now willing to try again if he messed up on something, rather than cry and run off. He would persevere at getting his thoughts out. He could sit and do school for almost two additional hours if asked. It seemed clear that we had our answer – C did, in fact, have ADHD. As we worked with the medication, we realized that C was having the same issues E had with these same meds. It’s metabolized rapidly and the patient needs to take increasing amounts to keep a stable effect. The problem is, as we played with his dose, he began to lose his appetite (which is a known side-effect). This kid just about lives to eat. He loves to snack all day long. He is always hungry (although honestly, he could be using food as a sensory input), so this change was a big red flag and we slowly backed him back down on his dose until we found a suitable one.
He has been medicated for about a month now and, although the medication helps, it isn’t quite right. Likely, a different medication would be better. Maybe, now that he can focus a little bit, we are seeing underlying issues that he is also dealing with. We don’t know the answers.
With the determination of a mother on a mission, I typed up our notes. Notes of symptoms we see, changes from the meds and even notes from the therapist. All things that support our need for help. Then I make an appointment with the doctor that E goes to on the same day that E had a follow-up. I knew that the doctor had already told us that C didn’t have ADHD but, things had changed. He was not defiant anymore. We had followed his suggestions and still needed help.
I don’t really know even what to say here except, I was wrong. The doctor invites me in and we started out with E because he, theoretically, needed less time. Then after quite a while, we move on to C. I explain what we are dealing with. I hand him a copy of the notes that I had typed for this appointment. He thanked me but did not even look at them. He then told me that he would not be able to help. He did not believe that C had ADHD. He might have ODD but not ADHD. I questioned the fact that the medication helped and was informed that the particular medication we were using could help anyone, regardless if they had issues. What? I asked about the inability to communicate and focus. I was told that C needed more behavior therapy rather than medication. Something like ABA Therapy would be just right. But, when I questioned how to get that therapy when it’s only available to patients diagnosed with autism, I was told that <shrug> it seemed like I was “stuck.” Then he told me that I, personally, needed to create a more regimented day for C with a strict schedule and to be more firm with the rules. Never mind the fact that we’ve done this to no effect. When we tell C “No,” he can’t cope with his out-of-control emotions so he throws a tantrum that turns into a 20 to 60 minute meltdown, crying, pouting, moaning and throwing things, regardless of there being an audience or not. Sometime, he cries so hard and for so long that he vomits. In telling me about needing to better train C to behave, the doctor tells me to think about all the amazing things you can train chickens to do, and they practically have no brains. WHAT!? Are you comparing my child to a chicken or saying that that he has no brain? What the hell?
Inside, I’m mentally shutting down. I’m fighting the urge to cry at the unfairness of life. Fighting to regain balance so that I can defend my opinions. But, before I can get a grip on them, he brings both boys into the office. He directs E to step on the scale, takes his blood pressure and so on. He talks to E about how things have been going, and then he shows us the door. Wait. Didn’t I have an hour booked for C? Shouldn’t you at least take a moment to talk to him too? I know for a fact that most of our time was spent talking about E. I know, because I can read a clock, that he just used our appointment to catch up on his late schedule. As I stand to put my coat on, practically numb with disbelief, C pipes up: “Hey what about me?” The doc replies: “Well I saw you,” gesturing to C sitting on the sofa, and then holds the door open for us.
I’m an emotional person by nature and, let me tell you, I bounced from shock to anger lightning fast. I was fuming. I whipped out my phone and called the hubs to rant about what just happened, all the while trying to moderate myself and hint at how I really felt because there were children present. The rest of my day was spent mentally raging, planning on what I would write in my scathing letter to that office. Oh! He was so fired! Let’s not forget that, meanwhile, I’m trying to drag my kids through Costco, their most hated store. They, of course, are feeding off my bad mood and are reacting to it and the overstimulation of the store. Now we are all upset. Is it happy hour yet?
After nearly a week, I am still shocked at how I was brushed off by that doctor. I’ve calmed down and will not respond in kind, and I will not write my scathing letter of disapproval. I will however, be the advocate my child’s needs. I will start over from the beginning. I will hunt down the referrals I need to see the specialists and get the evaluations I need. I don’t know what we find, but I am confident that we will find some form of help for our little C.
That doctor is out, but another will soon be in.