We left our house at 8:30am yesterday morning and arrived at the hospital at 10:30am.
Yup, it took 2 hours to get into town and there was no accident that we heard of or could find on any of the radio stations or Twitter (I love @news1130radio).
We called into the Clinic just after 9am to let them know that we hadn’t even reached the Bridge yet. I was thinking that we might be approx. 10 minutes late – not HALF AN HOUR!
Unfortunately, this cut into our appointment time and while the Dr that we met with was super nice and did take some extra time, our appointment was a bit rushed and we didn’t get the full time allotted to us.
We are still processing all the information that we received in our appointment but for the most part it was good.
This psychologist once again confirmed, after a short conversation with Jeremy, that he is NOT Autistic. Not that we were harboring hopes that he is, but she just let us know that there is no way. He is just too interested in being a part of the world around him.
We talked briefly through his history and through his meds that he’s currently on and then because of the lack of time, she cut to the chase…..
She wants to try Jeremy on two different medicines than the current cocktail that he’s been on. After listening to us talk about some of the things that Jeremy struggles with as an individual and that our family struggles with as a whole, she doesn’t believe that his meds have been helping him hardly at all.
According to her and to the Psychologist who assessed him for Autism, it should be a night and day difference.
The problem that we’ve been having is with what our interpretation of what Night and Day difference means.
See, if Jeremy struggles with Impulsivity, Hyperactivity, Inattentiveness, has problems reading & recognizing social cues, and organization along with a host of other things…..once he gets on the correct balance of meds…..those things should mostly disappear and he should appear and act as a fairly typical child.
I didn’t even know that was possible!
For the past 4 years, we’ve been giving Jeremy medicine to “help” with the ADHD and if all of those problems were rated out of scale of 1-10 with 1 being non-existant and 10 being the worst….without meds, Jeremy probably rates a solid 8 or 9 out of 10. On meds, we might be hitting a 4 out of 10. A normal boy might fall in the 1-2 out of 10 range.
If you knew/know what it’s like to live with an un-medicated Jeremy, and then to see him with the meds in his system….the 4 out of 10 sounds and looks pretty amazing! COMPARATIVELY speaking!
But then understand that for the past 10 years, we’ve been living with and loving on and working with a child who lives and breathes ENERGY! EVERY! WAKING! MOMENT! and quite honestly….because he has trouble sleeping….even the nights are scarey. When he was little and we lived in Abbotsford, he would wake up and roam the house and there was one night that he even opened the door to go outside. Now, fortunately we had an alarm system and so we caught him, but my point is that even during the night we had to be vigilant and we couldn’t let our guards down for even a minute.
That’s a whole lot of stress on a family….on a parent!
Living with a child who has special needs is not easy. We don’t go out very often. We don’t visit places or people very often and when we do, its with a great deal of stress on my part. There have been too many people in our past who have openly judged him and us for his behavior or lack of understanding of appropriate social expectations. ADHD is not something that most people just “understand” unless they know or have someone with ADHD in their lives or unless they’ve taken the time to understand. Too often it’s seen as a “bad child” or “bad parenting”. If people knew how hard we work with Jeremy and recognized how much effort we put in to this there might be less judgment or at the very least more understanding. One HUGELY DIFFICULT thing in all of this is that we put a HUGE amount of effort in and to see him “in action” you might not think that we’ve done anything. We may look like hugely lenient parents and we are anything but…..can you imagine where he would be if we didn’t work as hard as we do. It’s tough to feel like all your efforts don’t mean very much! To have a child with ADD/ADHD is really tough.
To explain……I don’t like to go places where Jeremy may do things that are inappropriate. That’s pretty much EVERYWHERE! I know that he’s going to act inappropriately in any number of situations or ways and I try, with everything in me, to “stay on top of him“, to be aware of where he is 100% of the time. I try to be aware of who’s time he is monopolizing, of what he’s saying, and what actions he is doing that others might find offensive…..because my reality has been that of judgement.
He looks like a normal child. He can talk (boy can he talk)! He can reason! He loves to share jokes and talk about his creative ideas….he just doesn’t know what’s acceptable and what’s not and he can’t even tell that you might not be interested. For example, He might try to tickle a small child and instead of doing it once or twice and seeing the baby smile and then stopping…..he might do it 10 or 15 times, until the parent is trying to protect their child from him….and even then…he might not clue in that the parent is uncomfortable, unless they actually say something like, “Please stop that. The Baby isn’t finding that funny any more and I would like you to stop.” Typically what happens in a situation like that, is that the parent laughs nervously, attempts to indicate in a subtle way that they don’t think the baby is enjoying the attention. Jeremy will the indicate that for sure they are because they are laughing. The parent will try again, subtly to get him to stop….by this point any normal person in Jeremy’s position would be embarrassed because the parent is obviously not happy but Jeremy is still going because he doesn’t catch the subtleties of the situation and finally the parent gets upset and rudely tells Jeremy to back off and then we either hear about the situation first hand OR what’s worse, is when we hear about how strange (or awful) our child is through another person that the parent talked with……
That’s just one example….but that has been our life….
So I go anywhere and everywhere, strung out and stressed out and wired as tight as a spring even before we go anywhere because it’s not about the possibility of Jeremy doing something inappropriate….that’s a given….it’s just how badly the situation will go and how understanding or judgmental the people on the other end will be.
According to the ADHD physcologist, Jeremy is ADHD (Attention Deficit Hyperactive Disorder) and is also dealing with ODD (Oppositional Defiant Disorder). When she said ODD, Jon and I were both taken back, but she explained that it’s not that’s he’s openly defiant in an aggressive, destructive manner. He does, however, question and challenge almost everything, and in that manner….he meets the criteria for the oppositional part of that diagnosis….
I don’t believe that all these letters (ADD/ADHD/ODD or any others) DEFINE Jeremy but that they give us a starting point to be able to talk with other professionals in a knowledgeable manner. It’s a starting point. It’s a common ground that we can meet together at to discuss how Jeremy can move forward in a successful way.
I will be honest and say that the meds stress me out some. If you know me….you know that I’d rather do things all naturally. Not that in my life right now that’s even a possibility (what with the CHEMOTHERAPY and all) but I don’t like to use chemical’s in my house. I don’t like to use chemical’s on our bodies and I certainly don’t like to put chemicals into our bodies…. I struggled with medicating Jeremy in the first place. It’s not really gotten any easier over the past 4 years.
The Dr has prescribed Jeremy two meds. One is called Vyvanse and the other is Risperidone.
The Risperidone is being used to help with anxiety, disruptive behavior and eating disorders. There is a huge amount of anxiety that comes with not knowing what to expect from certain situations or people, and from not being able to focus your thoughts…especially when it’s expected of you. When your brain is jumping around from thought to thought to thought and your behavior is off because you keep jumping from activity to activity…well that disruptive behavior also can bring stress with it. One other problem is that often a stimulant has a negative effect on your appetite. As a result, Jeremy has been hovering around 60 pounds for the last 3-4 years. This past summer we took him off his ADD meds and as a result he gained about 5 pounds and at some points in the summer was actually solidly 65 pounds, but once we started back on the stimulants this fall…he lost 2-3 pounds. It sucks. One of the side effects of this drug is weight gain…and while some people might consider that a negative side effect….we believe that having a few extra pounds on his frame will help Jeremy to feel a bit better. To show you the difference….Our 1 year old is just over 30 pounds and our 4 year old is just at 50 pounds….Jeremy is 10 years old and about 62 pounds…..he just doesn’t weigh enough to be healthy!
The Vyvanse is a stimulant. If you’re not familiar with ADD/ADHD, the front part of your brain is basically the “Conductor” that tells the rest of your brain what to do….it needs the chemical dopamine to be able to function well and properly. For people without ADD/ADHD, your bodies produce the correct amount of dopamine and the “Conductor” keeps everything organized and running smoothly and as a result, you can go about your day without feeling frantic or stressed and without “jumping from thought to thought to thought“. If you don’t have enough dopamine, then your “Conductor” doesn’t function very well and depending on how much or how little dopamine you produce, you may be more or less organized or hyper or able to focus your thoughts. Having a stimulant kicks the “Conductor” into gear (much like having a morning coffee, also a stimulant) and Jeremy is able to settle down and to be able to focus a lot more.
It was tough to walk into the Mental Health Building and I’m coming to grips with the fact that a child of mine is in need of Mental Health Services to be able to be a successful person. There is so much negative stigma attached to Mental Health Issues and while I’m not out to crusade for Mental Health…I am definitely out to crusade and champion for my son….but the two are tied together, aren’t they?
There are so many people out there that need help. It shouldn’t be embarrassing to need help. The goal is to be able to live an amazing life and to be able to function well in society and if you require some help to be able to do that…..then so be it.
This is not to say that it’s easy to be walking this road, but I want the best for Jeremy and I will do whatever it takes to help him to be successful. I believe that we are on the right path…..a tough path, but the right path for him.
The alternative……to allow him to needlessly struggle for the rest of his life and end up feeling stupid or dumb or insecure – NOT ACCEPTABLE! This is not something we can “discipline” out of him. Yes, structure is good and learning about choices and their consequences is imperative. Learning to grow and learn from our mistakes the best we can, is so important…..but it would be so UNLOVING of me to not help Jeremy in the way that he needs help. I wouldn’t discipline my child if they were diabetic in the hopes the they would start producing insulin and so neither will I neglect the fact that his brain requires a little extra help to be able to function well.
And so here we are…..I’m eager to see how this new round of meds will help….I’m hoping that this might be the key to unlock this child of mine from the confines of his own brain. Time will tell but I’m hopeful!
Added to say: I just want to recognize those people out there who do love Jeremy unconditionally and who champion him and accept him regardless of his challenges……I am so grateful and thankful to you for accepting and loving my boy almost as much as I do. We couldn’t have survived these last 10 years without you.
