Let’s Talk About Mental Health Issues……

I’m frustrated with the whole concept of guilt and Mental Health.

I, in no way, have all the answers; and on most days I question whether I have any answers. What I do know is that I deal with anxiety and have for as long as I can remember. My mom says that I was fearless as a child and so, I’m not exactly sure what happened, because I don’t really have any concrete memories where I wasn’t dealing with anxiety.

At least 3 of my kids deal with some level of anxiety and Jeremy is also dealing with ADHD, Executive Function Disorder, Learning Disability and Autism. All of those fall under the “Mental Health” umbrella. They all have areas of “Brain Disfunction.” In my mind, that means there are areas where the brain is not functioning in a Neuro-typical way. I do understand that there are many who don’t want autism classified as a mental health disorder because it is usually thought of as being a genetically predetermined disorder, and there is a certain amount of “shame” associated with mental illness or mental disorders.

I choose to think differently about the whole concept of Mental Health.

I deal with any physical health issues for myself or my children in a completely non-guilty manner. If myself or one of the kids has a cold, or a broken bone or some other physical ailment, I don’t feel guilty taking them in to see our Family Dr or a specialist, if needed. Why then, if myself or one of the kids are dealing with Mental Health Issues, should it be any different?

In my mind, it shouldn’t be any different at all.

If my car needs a tune up. I get it done. If my house needs a hose for the water tank, we get it done. If our clothes are in need of repair or replacement, then I take care of it. Why do we take care of our physical bodies and our belongings, but hesitate when it comes to mental and emotional issues.

We, often, hesitate to talk about it openly and freely. Sometimes we hesitate to even admit it to ourselves. It’s a tricky subject and not one that everyone understands or even cares to try to understand, but Mental Health and Mental Illness are not going anywhere.

I’m trying to raise my kids to understand that Mental Health is as important as Physical Health. It’s important to take care of your mental/emotional state; and it’s important to take care of your physical state.

If I needed insulin because my body never produced it, or it produced a very small amount……would that make me “less” in some way. Would it mean that I was broken and not as valuable or worthy as someone else who didn’t need insulin shots? So what if I need extra seratonin in my brain, for either a while or even forever……I don’t see how the two are different. What if genetically, I don’t produce as much as you do? Or what if I experienced some traumatic event in my life and the stress has negatively affected my body in such a way that I needed some help, in the form of seratonin or any other mental health drug…….why is that any different than needing insulin or any other drug.

I don’t see that it is.

In my family, there seems to be a huge history of anxiety and depression. I have also experienced a stillbirth, 4 pregnancy losses and cancer, as well as dealing with a child/children with special needs. So whether it’s genetically predispositioned or because of some life trauma…..I don’t know.

What I do know, is that being on medicine has helped “ME.” I’m not advocating that everyone needs to be on meds. Because if you can deal with your mental health issues through counselling and Cognitive Behaviour Therapy….then awesome….but by doing that, you are still “taking care of” your mental health.

For the first time in my life, that I can remember, I feel like the inside of me matches the outside of me. It’s crazy hard to explain, but I will try. I’ve had many people not believe or understand that I was anxious (as a teen or young adult) because I seemed so confident and in control. I think that must be where my kids get it from. They seem to hold themselves (mostly) together when they are at school or church or “out” and then when they get home, they feel comfortable enough to “fall apart”.

I don’t know that I did a lot of “falling apart” but I did use “control” as a method of dealing with how “out of control” I felt. I felt that I needed to control my situations, the people around me and myself in order to feel safe. It got to the point where my “control issues” were hurting my relationships. And yet, I didn’t understand “why” I felt the need to “control” everything. I just knew that I felt safer when I knew exactly what to expect.

I did believe that I was a good person and yet a part of me didn’t believe that. I believed I was a good friend and yet the insecurity and anxieties held me back from actually “being a good friend.” I thought I could do things like “sing” and yet I could never put myself fully “out there” because I couldn’t possibly be good enough and what if I made a mistake…..what would people think of me. I know that lots of people deal with a certain amount of insecurity and I don’t know that I can fully explain just how it felt inside of me. But imagine if you thought you were good enough but then you weren’t really sure if you could believe yourself…..and if you were so unsure then maybe you really weren’t good enough. Throw in some perfection issues which meant that you couldn’t or wouldn’t do ANYTHING you weren’t absolutely certain that you could do with 100% accuracy and confidence………and that pretty much left you not doing much at all. You wanted to do “stuff” but unless you could control the situation and knew exactly what to to expect and exactly what people’s reactions would be and exactly what the outcome would be……….which having all of that fall into place for any specific event, was pretty much an impossibility and if it did…..you came across so confident that no one would ever guess that you were dealing with insecurity and anxiety……and throw on top of that whole mess, that you never wanted to come across as anything less than confident and so you were exhausted all the time just trying to hold yourself together so that you could come across “PERFECTLY” because anything less than perfection was failure and “FAILURE” was never acceptable and basically you have a perfect recipe for disaster.

Knowing what I went through as a teenager/adult, and then when I finally figured out that I was dealing with “anxiety”, feeling so relieved and yet angry and grieved over all the lost time………I am strongly advocating for my children’s Mental Health when necessary.

I look back at my teenage years when I didn’t feel strong enough or worthy enough or acceptable enough to do things like, go to college or university. I figured that I was good at looking after kids and so rather than do things I was interested in, like music or teaching or even in the medical field….I took whatever jobs fell into my lap, got married and had kids. I was too scared to do anything else.

I love my husband. I love my kids. I’m not unhappy with my life, and yet…..I could have done things differently. I’ve shared this with people before and I usually hear something like, “We all feel insecure and regretful of the things we wish we had done but didn’t do.” This is different. I’m talking about life crippling anxiety. Like there where things I wanted to do and yet was SO scared to do them that even the thought of doing it stressed me out, and so I did what felt safe.

I’ve lived my entire life, up until now…..only doing things that felt safe……and that doesn’t seem like a huge list of things, especially compared to things that I have dreamed about doing over the years.

I’ve accomplished a fair amount in my 38 years but I’ve dreamed of accomplishing so much more. I’ve just discarded those dreams because I wasn’t good enough, or people would think I was stupid for wanting to do those things. I believed the lie that others could do it better than me and I shouldn’t even try in case I failed. Because failing is one of the worst things ever. I believed that. I’ve believed that for so many years and I hate it.

This is why I’m a HUGE advocate for my kids and their mental health. I’ve pushed my kids beyond every “limitation” that I’ve had that has held me back. I’ve explained why I’m pushing them into uncomfortable situations. I’ve had them ask for things from adults/teachers/doctors/etc. when they felt uncomfortable doing so. Discomfort isn’t a bad thing. Failing isn’t a bad thing. It just means that you tried and for whatever reason it didn’t work out, this time……..and that’s ok.

Never try, never win
never get a break
You miss a hundred percent of the
shots you never take

Hedley came out with this song and it’s been HUGE for me……

I’m a lot more open now. I say “yes”, when everything in me wants to say “no”, because “NO” is safe. I don’t mean that I say yes to everything. I’m still in recovery mode from the 2.5 years of cancer treatment and the havoc that wreaked on me. But, I will honestly assess my stress level, versus just saying “NO” because I’m scared. I ask myself if I’m allowing anxiety to hold me back from saying yes to something that I might actually want to do and even be good at. I try to be honest with myself about what I can do and what I can’t do, and to not view everything through the lenses of anxiety. I will even tell others that any hesitation they might sense from me is anxiety and I’m not willing to allow it to control or rule my life any longer.

Does this mean that all my days are good, confident days…..NOPE! Not at all. And when I’m having a particularly bad day – as far as anxiety goes – I am gentle with myself and honest with both myself and others as to how I am doing. Because I know that tomorrow is a new day and most likely I won’t feel the same. I have stronger days and weaker days, but now I know that I am “fighting” anxiety and that it’s not me……I’m not bad.

I am enough. I am good enough. I am strong enough. I am confident enough. I am enough.

I want my kids to believe that they are good enough and can do whatever they want. I want them to “go for” the things they want and so I advocate for them and I encourage them to advocate on their own behalf. We talk about strategies for dealing with “issues” and “insecurities” and “anxieties”. We use medication as an aid, if necessary, and we do it all without guilt. There is no guilt or shame in needing help…….whether its physical, mental, emotional or spiritual.

I am enough!
They are enough!
You are enough!

Exhaustion

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I’m so tired…….I think I’ve been doing better and then something comes along and knocks me down so flat that I feel like any forward movement I’ve made has all been taken away and I’m right back down to scraping the bottom of the emotional/mental/physical barrel.

This week has really done me in. Between first days and lunches and anxiety and high school……it was all pretty overwhelming but I was hanging in there.

Today totally just knocked me over the edge.

I was originally going to take Jeremy out to the appt by myself, and then we had some issues trying to work out who was going to watch Judah and who would pick up Siah and I thought that maybe I might get out of having to deal with today (avoidance……awesome escapism tactic). Jon felt I really needed to be there.

Oh, I didn’t want to. It’s so hard. When your son doesn’t fit “the mold” neatly and nicely and attempting to diagnose the “puzzle” that is your child means that you have to fight with every ounce of strength that you have and even with some that you don’t have…….it’s tough. And after fighting last time and being so dismissed…….it was such a blow that I…..we….didn’t even really want to hope for this to work out.

And yet we want the best for our son and so we scrape together the courage to go to a meeting where we bare our souls and pull out every negative aspect of our son and of ourselves and of our families…….and lay it all out for someone to see and hear and sift through, in the hopes that they will be able to give us answers – or at the very least clues that will help us to help our child.

I sit there in these meetings and wonder how our genetic soup managed to come together in such a way that our son was given this……

ADHD, ODD, Anxiety, SPD and possibly ASD…..all mashed up together in one small child.

It’s SO much. It’s so much for us to deal with. It’s so much for him to deal with. It’s so much.

And yet, like with Angelica……..we make it as “normal” as we can. Bald is beautiful. Confidence is beautiful. And our brains are all unique and the things that make us unique make us so very special. We play up the incredible aspects and attempt to make the difficult things “just a matter of fact”.

But the truth is……it’s not easy. In fact, somedays it feels like a crushing impossibility.

We won’t know the results for a bit. I’m hoping for an Autism Diagnosis because there is so much in that particular diagnosis that makes sense and yet, I’m so scared to get my hopes up.

I want help. I’m tired. I’m tired of fighting. I’m tired of trying to be strong. I’m tired of carrying everyone. I’m just really tired.

To be honest, getting the diagnosis would feel like someone was validating just how difficult the past 12 years have been. Don’t get me wrong. I love this young man with every fiber of my being. Which is why I’m fighting with energy that I don’t really feel I have to give…….but it’s been tough…..really tough. And I’m tired.

I’m so tired.

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…..