What’s in a label

another post from Jon

In the summer of 2011, right in the middle of dealing with cancer and a 1 yr old baby, and… everything, we had an assessment to see if Jeremy had ASD. Being the geeky, need-to-know people that we are, we went to the assessment armed with DSM-IV self tests, and a whole host of facts about Autism, Asperger Syndrome, and mental health issues. Asperger’s explained everything: pedantic rules, unexplained extreme anxiety, very poor social development, inability to empathize or sympathize (while at the same time being very concerned about anyone being in pain or acting upset), single-minded unyielding focus on certain topics with the inability to focus on almost anything else, and a whole host of other stuff.

Light Reading
Light Reading

I’m not totally sure why, but he was not diagnosed with ASD, but rather Extreme AD/HD (one of the most extreme cases that BC Children’s mental health had ever seen).  I was so upset.  People think that that is weird or that maybe I wanted the money and programs that are available to kids with ASD, that are not available for AD/HD kids.  Some think that a diagnosis that is of a “lessor” disorder should be good news.  That’s totally missing the point.

Labels (or proper diagnosis) don’t change anything about the person.  Jeremy is an amazing and incredibly bright boy, that struggles with a host of things.  Remove him from the medical system and nothing about him changes.  With or without a diagnosis he is still smart, and still doesn’t know how to connect with a guest in our house, and still cannot read the faces or emotions of the people around him, and would still never get invited to a non-relative’s birthday, and would still destroy very valuable things that are not important to him, and would still not be able to tell a joke to save his life.  He would also still be able to look at a box of junk and invent almost anything he can think of with creative problem solving that boggles the mind, and he would still melt when he stumbles on something that earns him praise.

There are reasons why he didn’t get the label of ASD.  One of the reasons is that he would get angry and loose all ability to communicate when he was very young.  So we drilled into him how to express what he was feeling.  We could not understand how that could be so difficult but after years of walking him through: “are you ‘angry’? are you ’embarrassed’? are you ‘frustrated’? are you ‘sad’? …” he got to the point where he knows, at least academically, what emotions there are and what they apply to.  So if he is being assessed and is shown a picture of someone expressing an emotion, he might be able to access that academic information and tell you they are ‘sad’ or ‘happy’.  Put him in a classroom where he leaves his desk in the middle of a lesson to collect another broken pencil lead (literally a desk full of tips of pencils that had broken), he could not tell by looking at her face or body language that a teacher was getting impatient with him.  Another thing that I think worked against us is that we came in with so much information and were so convinced that it was ASD, that the psychologist kind of felt like she should push back and examine other possibilities…. So we got “Extreme AD/HD with Anxiety and Sensory Processing Disorders”

The label of ‘Extreme’ AD/HD got us new meds and more advanced medical care and it helped a little.  Add in “Anxiety Disorder” and meds for that it made some things better and some things worse.  Add in “Sensory Processing Disorder” and that explains some things and gives us strategies that help a little (weighted blankets, sensory deprivation rooms, sensory toys, dog clickers… he desperately wants one of these.)

Here’s the issue for me: If I take Jeremy to a summer camp where they have qualified supervisors that know about children’s mental health issues and I say “here is my son, he has ADHD / SPD / Anxiety”, then he gets treated thoughtfully, but he will still likely have a good handful of avoidable negative experiences.  If I say “here is my son, he has Asperger Syndrome”, then he gets treated in a way that avoids almost all problems.  That’s where a label makes a difference.

A label doesn’t make the actual condition better or worse.  It doesn’t validate, exonerate or diminish you as a parent. It doesn’t make symptoms go or come directly.  But it does give you a common language, terms that you and the people that you work with understand right away.  It does give you access to tools and strategies that are unique to the issue.  It does give you the ability to sit your extended family down and say, “our son has _____, and the symptoms for that are ______, and this is how we deal with it, and this is what you can do to help”.

Its a lot harder to have a diagnoses that doesn’t cover the issues and you are left trying to say something like: “hi, here is our son with ‘Alphabet Soup’, but he’s also got issues with social skills, and he has odd things that crank him up with anxiety and they don’t seem obvious, so if you see (here is my list of 10 things for Jeremy to avoid) any of these, then you might need to let him go take a walk outside, and if you play sports you will need to watch what his ‘teammates’ do and say to him because he doesn’t understand… (and at this point they are tuning you out and wondering what monster you are sending them).”

After working with the current diagnosis for almost 2 years and trying everything imaginable with some very very good behavioral therapists and occupational therapists, our amazing home school is using some of their resource money to pay for a private reassessment for Jeremy.  The behavioral therapist is attaching a note about her work and observations and has told us, “if he doesn’t walk out with an ASD diagnosis then I am in the wrong career.”

I’m hoping soon that I can just say without qualifiers or exceptions that: “Our son is autistic.  He has Asperger’s. If you don’t know what that means then educate yourself – watch the Temple Grandin movie, read a book or two, watch the first season of Parenthood (not totally accurate, but close enough). Then armed with that information, please come and be an involved and help us out… or at least understand what we are dealing with and cut us some slack.”

I’m not saying that anyone is doing a bad job or is not supportive. In fact we have very good family and understanding friends and great church youth leaders.  But even they are struggling with trying to understand how to treat J with a diagnosis that is very complex and doesn’t cover everything rather than just reading up on what it really is.

So we wait for the reassessment; maybe August, probably September.  We’ll let you know how it goes.

~ Jon

A Moment To Breathe….

Jon sent me to Starbucks to get away from the house and kids for an hour or so on Saturday morning and while I avoided writing anything for the first hour, I figured that I should at least try to work out some of the crap that is banging around inside of me……..

Me

I’m sitting in Starbucks feeling like I should at the very least attempt to put my thoughts down onto paper.

I’ve been so all over the place recently and it’s frustrating me.

I want to be able to talk about how I’m feeling and why, but every time I think about what I want to say it all comes across whiney and needy and I hate that.

The church that Jon works for is going through a tough patch and he’s not gotten paid in the last month and while we’ve managed to scrape up some funds from small tech jobs here and there……it’s only just been barely enough to cover the bills AND he’s been crazy busy trying to juggle everything.

I have been SO FRIED from this past year and I was really REALLY hoping that I’d get the summer to be able to rest and recuperate and instead of having a slower paced life and more time with Jon….I’ve had more heaped on me and less time with him…..that part sounds like whining – I know…..but I love Jon…I love being with Jon….I love talking with him and working things out with him. We work so well together as a team…and this past year has stressed and strained us so much! We are okay! We are dealing with “ALL THIS”, but I miss him so badly and I desperately wish that we had some time with each other….but it’s not really happening right now.

And now….this whole post has gotten de-railed for me because I feel bad for whining about my problems and issues when there are people out there who would give anything to be in my shoes…..

I guess it shouldn’t be de-railed because I still have a ton of other issues in my life, and I’m not really sure who would want to trade for those…

I guess what I’m saying is that no one’s life is perfect and I’d give grace to someone else who was complaining about their life and the tough things that they were going through and so why shouldn’t I expect that others would treat me the same way?

I guess this all goes back to m not wanting to bother people….I struggle with that so much. I don’t want to talk about how tough my life is when I know that others are struggling with their lives and yet, why am I okay with them having issues and talking about it?

I dunno. Any thoughts?

Another thing that is weighing heavy on me is the whole Autism/Aspergers thing with Jeremy. I’m terrified of not getting a diagnosis and yet when going through this process – you must come face to face with all the negative aspects of this “syndrome” or “disorder” and well…..it’s pretty negative.

To have to list down on paper all the areas that your child struggles with, to have to admit that it’s pretty bad……to see what is considered “normal” or “neuro-typical” and to see that your child is not even anywhere close that that ideal……. When, over the past 10 years, you’ve come up with coping mechanisms and put measures into play to structure your lives so that you can pre-empt the negative aspects of this “disorder” but then to realize that it’s “not normal” to have to live like that…its tough!

What’s even harder is when your child is desperate to be around people and yet they don’t realize that their actions make people uncomfortable……..and aside from explaining to people (most of whom don’t care or understand or care to understand) that your son has……..has what???? He’s not been officially diagnosed and then I’m right back at the whole, “I’m terrified that he’s not going to get diagnosed and we’re going to have to do all of “THIS” by ourselves” and I know that at this exact moment I don’t have all the answers that we need to help him be the most successful person that he could become…….it just about destroys me!

On top of that, I’ve been noticing that Siah is displaying some of the symptoms of being on the Autistic Spectrum…..it’s difficult to get him to look you in the eye. He is very literal. He doesn’t do a lot of pretend play. He has melt downs when things aren’t exactly as he expects them to be (I’m not just talking about typical 3 year old behaviour)….He is less understanding of social situations than “normal” kids…..and although he doesn’t seem to struggle as badly as Jeremy does….he’s only 3! This means that he’s not in a lot of the same social situations that we see Jeremy struggling in.

We were supposed to get a call in July to book an appointment in August for Jeremy and I’ve not heard anything yet. So I did call in to our case worker on Friday, but…..she only works on Tuesdays and Wednesday’s and so I’ve got to wait until Tuesday before I hear back from her……GAH! I’m so sick of waiting.

I really wanted to get this dealt with BEFORE Jeremy went back to school so that he could get started on the right foot and not be struggling from behind……..I’m still hoping that we are still on track for an August Appointment for Jeremy.

Well, After all of that…..I’m outta time. I’ve got to head home back to the masses. I’m just gonna post this for tomorrow and hope that if it comes across poorly, that you’ll all just have grace for me…..well, cause if you don’t, I’ll just cry. I might just cry anyway!

GAH! I don’t really feel like I’ve worked anything out inside of myself and I hate that……

I do believe that I’ll be okay….that we’ll be okay but I’m tired! I’m tired of feeling like I’m fighting for everything……I just want a moment…..a moment where I’m not struggling or fighting. I just want a moment to breathe…..