The doctor is… Out!

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.[1] 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.[2] 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.[2] The child might have a diagnosis of attention deficit hyperactivity disorder, or diagnoses of anxiety or depression.[3]

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.

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#JudgeyFace

In the past week, we have been away from home at least half the time; doctors that are too far to travel to in a day and so on. One thing of major import in my world, is that our little C is finally going to get some assessments and we are going to finally know what we’re facing. We had our first visit with his new doc. On the first visit, he meets with just the parents to find out what we hope to accomplish and so on with his help. I know we don’t need labels on our kids. I know we won’t treat him differently, except everything will be different. When he’s running down the sidewalk cartwheeling his arms and legs out to the side as he goes, we’re not going to be as frustrated with him if we know that he’s not being crazy, he’s self-soothing. I mean, in some ways, we already treat his oddities this way. We’ve learned from working with his brother that these are the ways that he fills his sensory needs, but it is still really hard to act like everything is fine when he’s running away from you, bumping into other people or sitting upside down in his chair at the restaurant. He’s a wonderful, loving child who seems very ill-behaved at times but really isn’t. We are tough on him. We make him earn his privileges and so on. However, for those not in the know, he often comes off as a wild child.

Today, while trying to eke out a little bit of school work from him, he sat on the table, with an elastic tie around his head and used the tip of the tie to point to the answers as I scribed them out for him. He kept saying that his brain wasn’t working; he couldn’t think but, as soon as I took over the writing, we got a few pages done, as long as I allowed the odd tie situation.

So, something that made me happy: we finally got into this new doctor. Even though it was just one session, I already feel completely validated in some of the hard choices that we’ve had to make about C over the past year. Things like pulling him out of school because it was just too much for his sensory processing. Things like choosing to sit in the cafeteria at a spiritual assembly we attended, rather than the auditorium because the boys could not handle sitting in a room with almost 1000 people, and sitting at a table was easier for them to keep busy than sitting in a row of chairs all day. Fewer eyes on them if they have to move and so on.

Many do not get it, however, and we get the looks. You know, the look. It’s the look that is on the faces of so many strangers who have no clue what you’re dealing with. People, who look at us parents and think that we need to reign in our kids or make them sit more still. “Why does you kid have giant headphones on? Shouldn’t he be paying attention to the program?” You see the questions on their face. They can’t help it and they just don’t get it.

I recently came across this post by Louise Williams: No One Likes a JudgeyFace. She perfectly expresses a parent’s feeling when they get the JudgeyFace. As a parent that sees the face often, I think this is a brilliant article.

“…whilst at the pool when James wasn’t even being that crazy I saw it. The expression people pull when they are making instant judgements about James and I.

JudgeyFace.

Yep. The face that people display when they are appalled by what they see. They were appalled by my amazing son. How dare they?…”

“…They are judging us. They are judging him, for being a bit unusual and me for not doing something about it…”

It’s a known quantity for parents of quirky kids. No matter what you’re facing with your kid, there are people out there that will judge you or your child for not meeting their/society’s standards of “normal”. We just have to find a way to move past it; let it roll off our backs like water on the proverbial duck. (Does water roll off a duck’s back? I don’t know but, it seems like it should so, I’m going with it.)

That is a challenge though. We are fighters for our kids. We want them to have the same opportunity to have a happy, carefree childhood that other kids have. They are most likely oblivious to the looks but, we parents are not. We see it. We feel the judgement and we break a little inside for the lack of understanding, for the lack of normalcy that we don’t have. We could just as easily have a NT child (NeuroTypical = average) and the get the JudgeyFace anyway, and maybe we’d even deserve it. Or would we? As I sit here with my quirky kids, I realize that no one deserves it. No one really, truly knows what another parent is going through if they aren’t living in that family. Sometimes, even our spouses/partners don’t fully get it, because they may be working outside of the home every day. They see a few hours in the mornings and evenings and then on the weekends, but not the daily struggle of the stay-at-home parent. I know my guy tries so hard but, in some ways, he won’t ever be able to get it because he’s not here during the day. Besides, even when he does see it, he doesn’t get it from my perspective because we are totally opposite personalities.

In the post I mentioned earlier, Louise refers to a video called Too Much Information. I love this video! It’s a very short film done by The National Autistic Society that puts the viewers in the shoes of a boy with autism. It breaks my heart and yet I want to keep watching it. I want to be reminded what sensory overload can feel like because it can help to give me the patience that I need to help my boys work through their overloads.

We should be less quick to judge; be more sensitive to the variety of situations that could cause whatever issues brings on that face. Please watch the video and maybe you will feel less like making a JudgeyFace the next time the opportunity arises.

I shouldn’t still… but I do.

I should be used to this by now, but I’m not.

It should not break my heart anymore, but it does.

I shouldn’t still… but I do.

Last night was another example of what we deal with all the time but, is rarely seen by the outside world.

It has been a strange week of “off” behavior for E. If he were a girl, I would wonder if it were the time of the month. Mood swings, anger out of the blue, silliness, hyperactivity, intense food likes and dislikes. I’ve mentioned before that I, personally, have been dealing with hormone imbalance issues, and I’ve always thought that E was strangely in tune with me and my moods. Maybe that’s why it was such a rough week. A bad week for me means a bad one for him. It’s like the old saying: “If mama ain’t happy, ain’t nobody happy.” (Sidebar: I hate the word ain’t!) It’s true for us, but in a totally different meaning. If something is bothering me (or even, sometimes, Dad) then E reacts in a less-than-desirable way, and everyone in the household is upset by it.

Last night, C was having some “bathroom” issues. There aren’t a lot of polite ways to talk about the “bathroom” things that we deal with in this house but, I’ll try. A few months back, C had gotten so backed up, that he was in horrible pain and couldn’t even go #1. He asked to have an ambulance called and ended up having to be flown to the hospital to be taken care of there. Now, we are dealing with months, even years, possibly, of monitoring and assessing him to make sure that he’s regular and that things don’t hurt. Last night, he needed to “go” but couldn’t. The pain got bad enough that he couldn’t relax to go #1. The stress of the parents goes through the roof. Do we have to rush him to the hospital again? Can we fix it at home?

Our baby is in distress, and so are we. Dad rushes out to the pharmacy just as they are closing, and makes it in time to buy the products we’ve been instructed that will help the situation. I stay and sit on the floor while C is moaning on the toilet. When he’s ready for a break, we get him into a bath of warm water and Epsom salts. He calls this a “relaxing bath” because he won’t have to wash himself (which he hates). He lays in the bath for a while and, between that and patience, he was able to go. Victory! We are able to deal with the situation at home. No ER visit this night.

Meanwhile, I should mention that it’s dinner time and we are trying to feed the family. E starts vacillating between being out-of-control hyperactive and panicked over his brother’s distress. He is very empathetic in some ways. Of course, he has had his share of ‘bathroom’ issues as well. E had chronic constipation from infancy all the way to age 7. He knows well how difficult this issue can be. His stress at the issue at hand has caused him to get out of control and demand attention of his own from mom and dad. Attention but, not positive attention. This makes him angry and he starts slamming doors and yelling. He likes to screech these high pitched noises that hurt the ears. He also tends to pick one person to vent his anger on. Usually it’s me.

Trying to keep the peace, Dad and I take turns helping Caleb, eating our own dinner and trying to help E stay calm. The evening progresses, C starts feeling better, things get moving and he finally is tucked in bed with Dad reading to him. E decides to try to be defiant and refuses to get ready for bed. He starts fighting, yelling at me. He slams his door only to open it and start yelling that he hates me; I’m the worst (mother). Over and over. Meanwhile, I’m sitting as still as a statue, trying not to react. This is what he wants, what he craves. This is his driving force.

I know in my head that he does not hate me. It’s his out of control mind talking. He may not even realize what he is saying at this point. But it hurts. My chest is tight and I’m trying to hold in the tears. I calmly sit there, pretending to ignore his outburst. He throws things. Yells some more. Now he’s even more upset that I “don’t care” that he hates me. Any comment I make causes a reaction so I continue to sit and just say “okay” to everything that he shouts at me.

After a long, drawn out process, Dad is able to finally to get C to sleep, despite the noise. He goes into E’s room and informs him that he will come in and read him a story once E has calmed down. It takes a while, but we hold firm. E calms enough for Dad to go in and deal with him. They talk. E apologizes. He was out of control. He didn’t mean any of it. He listens to his story, goes to sleep and peace descends once again in our home.

I knew he didn’t mean it. I knew he would feel sorry for how he acted. I’ve seen this before. I shouldn’t let it get to me, break me, make me cry but, I do. I cry for the pain or confusion or whatever else my dear sweet child is dealing with. I cry for the “normal” child we didn’t have. I cry for myself, for stress release, to lament all the feelings inside. Then I go and comfort myself with a huge bowl of dessert. The night is over and the new day will be different.

It’s Not Autism.

To a parent of a “Quirky Kid,” those words can be a huge relief, knowing that something has been taken out of the equation. A weight has lifted off your shoulders because you know that it’s not this one thing. By contrast, it can bring another type of stress and emotion to the table. It’s great that it’s not this but, it’s something else. Now you have a bunch of referrals to other specialists so that you can narrow down just what you are dealing with. By this point you are emotional. You want to cry because you are happy that it’s not autism or, maybe, you want to cry because, wouldn’t it be easier if it was? At least you’d know the enemy that you’re facing. “Better the enemy you know, than the one you don’t.”

As mentioned before, we have two beautiful, brilliant children. Our oldest son deals with High Functioning Autism (ASD), which unfortunately took until he was six or seven years of age to diagnose. Now at almost nine years-old, we are managing things better than ever before, despite the “downs” that always come with the “ups,” and continue on our educational journey with him.

Our youngest son has been high-maintenance for a while, but not out of the scope of “normal.” We did our research, knew that there was a chance he could be facing similar issues as his brother, and so we wait and watch. We (myself more than the hubby) watch like hawks for signs, symptoms, indications that might mean something. Does he have autism? Should we worry? What struggles is he going to face?

I know every parent spends more than a little time worrying about their children’s health. Maybe it’s before they are born, worrying that they develop properly. Maybe they’ve gotten sick for the first time with something really bad. You worry; it’s in the job description. I tend to be “blessed” with an overabundance of worry. I am a worry-wart. I know better but, there it is. My mother-in-law, many years ago, gave her husband a little cross-stitched plaque that says, “Worry is like a fast getaway on a wooden horse.” I love that. It’s brilliant and simple. Worry gets you nowhere while using up your energy. Still, I tend to worry more than I should. That being said, I think that when a parent’s child has an issue of any sort (ours having ASD for example), that makes you prone to worry about the other children you have.

In our life, E was diagnosed later than most. We have dealt with guilt over not seeing the signs sooner, not getting help sooner, feeling that we did something to cause it… and the list goes on. Now we are facing issues with child #2 and every little detail about their achievements, or lack thereof, is scrutinized. Oh, he knows his alphabet before all the other kids in his preschool class. Should I worry? Look! he’s writing his name but doesn’t want us to know. He hides his intelligence. Is this an indication of a problem? He’s doing advanced math in his head, just like his brother. Should I worry? He’s doing this or that, should I worry? It’s really unfair to both the child and the parents. We are at a disadvantage. We have no knowledge of what having an average child is like so, we have no way to determine if C has issues or not. Everything is filtered through the lens of our experience the needs of our first “quirky” child. However, there are times when the scrutiny pays off. You may catch wind of an issue before it gets out of control.

About a year ago, we decided to see if we should do the ASD assessments to see if C was also affected. At the time, the professionals didn’t feel like he qualified to be assessed but wanted to do a follow-up in a year. Recently, we went in for this follow-up. He, again, didn’t qualify for the autism assessments. However, the doctor did agree that we could use some help in figuring out his “quirks.” She had a “no duh” type comment with considering sensory processing issues and recommended an Occupational Therapy Evaluation. Due to the fact that he almost never answers direct questions, a Speech Therapy Evaluation was recommended. Now we move on to his toe-walking. He has been wearing (or at least he is supposed to be wearing) foot braces at night when he sleeps and a different pair for the daytime. These are supposed to prevent his foot from going up on his toes, and train him to walk flat-footed. He doesn’t wear them often, the nighttime ones make him too hot and the daytime ones prevent him from running, skipping and jumping, which he lives for. He still walks and stands mostly on his toes, so we are referred to a Physical Therapist who will better evaluate if the braces are enough or if we need to try serial castings, or even surgery to help him walk flat and avoid any growth development issues as he gets older. It was also recommended that we see a psychologist to get an official ADHD diagnosis and to learn about the best way to help him cope with that, as well as getting an extensive IQ test done that might help to pull out which processing functions he may be struggling with. There is suspicion that, while he is a very brilliant child, he gets frustrated and confused when trying to voice what he is thinking; which could be why he get frustrated when trying to explain something and gives up, or never wants to answer questions.

It’s almost an overwhelming amount of knowledge to take in. There is a huge ball of emotion that is now in my lap. I’m happy that we don’t have another child having to deal with ASD. Or at least I should be. I almost wish it was ASD. Then we’d have an answer that we know how to provide help for; a step down the right path. Instead, we have more questions, with only one question off the table.

It’s not Autism, but it is something.

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