The Monster Within

I have never hidden the fact that I struggle with mental illness. I have struggled with various issues since childhood. The labels don't matter as much as the suffering they cause, but officially I have OCD, ADHD (Co-occuring with Oppositional Defiant Disorder), Body Dysmorphic Disorder, and I am in recovery (10 + years) from Bulimia.

  It's a mouthful isn't?

 I think the labels are a way to neatly and clinically describe the symptoms of what is actually a living hell. I don't actually own my own mind, it takes off without me and it travels to very dark places. I am helplessly along for the ride. Every once in a while we make a stop at the bottom, and I feel like I am there now.

  I made a novice mistake when it comes to dealing with mental illness. I decided it would be okay to reduce my medication. I've been ok for a long time and with a rational and medicated brain I could see ways to battle the illness without so many drugs. I should know by now that the unmedicated brain is incapable of the same rationale. The first few weeks went fine. SSRIs take a while to leave the system, the effects can stay with you for weeks or months giving the illusion that you are doing well with no medication. I know this. I still convinced myself that even if symptoms returned that I would be able to handle it.

 Well, I can't.

  My illness has hijacked my brain again and my thoughts are no longer my own. The voice, reduced to a whisper with my medication, is screaming at me relentlessly now. It's not an audible voice like psychotic people hear. I know there is no literal monster within. It's still soul-crushing, a flood of self depricating thoughts designed to tear away at my already fragile self-esteem... "You're a terrible mother... you're fat and lazy... why can't you do this right? ...do this or else...

Do this or else. That's how OCD works.

 Do this or else you are failure. Do this or else you will get sick and die. Do this or else you are lazy. Do this or something bad could happen. If you refuse to listen to the demands you are wrought with crippling anxiety and self-doubt. If you are well versed in CBT techniques like I am then you begin to obsessively analyze the thoughts and try to mentally combat them. It's exhausting. There is a war going on inside.. You vs. You and it's a battle to death. All while you are trying to convince everyone else you aren't a complete failure (OCD is behind you the whole time telling you if people really knew you, then they'd hate you too.) Do everything you are supposed to do. Do it better than you are supposed to. Go the extra mile. Don't falter. Don't be weak.

Well, I'm weak.

 We are all weak at some point. No one's psyche is bullet-proof. I've been unable to manage this on my own. I can't "snap out of it" and my ability to think those positive thoughts are what this disease takes from me. I really can't fight it. the fight is what is draining me right now.

 I have to accept the thoughts as part of the disorder. They lose their power if I don't try so hard to prove them wrong. I have to take my medication and deal with the side effects. Jaw clenching, shakes, and reduced libido are terrible... but nothing compared to losing your mind completely. I have to claw my way out of this hole I've inadvertently dug for myself.

  I am putting this out there in hopes of convincing anyone with a serious mental illness who is considering reducing or stopping medication to think long and hard about it. It's a long way back up from the bottom.

Our love is Stronger than Their Hate

The letter above has been circulating Facebook today. I could hardly believe that someone could be this cruel and heartless towards another human being. Much less one mother attacking another so viciously. What is even more unbelievable is the fact that the attacker (and this is nothing short of an attack) was provoked by the fact that this mother gave birth to an Autistic child and actually let him go outside to play. Apparently this woman seems to feel that she and her "normal" children are surperior and should not have to be subjected to the "happy stim" noise an Autistic child makes in his own backyard. 
  I wanted to rant and rave at this woman and fling all kinds of insults her way. I am angry. Outraged. I could easily create an equally vicious letter to the sender, but I am not going to do that. Instead I want to write a letter to all the mothers of children with Autism. Including this mom who was torn down so needlessly by a stranger. I want to uplift instead of tear down. So, from the heart .....





To any Mother of an Autistic Child,

     I also have a child with Autism as well and  I want you to know that your child has every right to be here! You have an amazing, unique child who is worthy of life, love, and acceptance. We can not measure a person's worth with something as arbitrary as an IQ score. Numbers derived from tests that were never designed for children who have such unique brains do not define your child! Do not ever feel like your child is "less" because different is NOT "less"!
 
  You have NOTHING to be ashamed of! You have every right to be at Target, the park, and the laundry mat even if your child isn't the cookie cutter version of "normal". Let the looks and comments roll off your back and remember that you deserve to live a happy life and do everyday things just like everyone else does. Your child's Autism shouldn't force you into exile. Know in your heart that you aren't alone and find strength in the notion that every time you walk into a grocery store with your Autistic child you are educating others.

  You are strong! Even if you cry everyday and wish you could change things.. you still rise to the challenge every single day. Out of love for your child. It doesn't get any stronger than that!

  I'll say it again, because you need to hear it; you aren't alone ! It may feel that way, because most of us are so wrapped up in therapy schedules and the day to day of caring for our children that we become isolated. Moms of Autistic kids have an unspoken bond. We all live by the creed: " I don't know you, but I know your struggle and I will extend my hand and heart to you if I see you in need." Don't be afraid to reach out for support.

  As mothers of children with Autism we can change the world for our kids and give them the future they deserve. Hold your head up high and teach your children to do the same!!!

                                                                  Love & Respect,
           
                                                                        Bridget Patterson

Occasionally Offensive

      * The title should give you a clue. If you are easily offended please go read a blog about Jesus or kittens or something. I am not exactly minding my manners here.*

  I said in my last post that I like people. I want to help people and I want to have friends. Some aspects of my personality don't lend themselves to making friends. For example, if you are an uptight, uber-religious, judgemental, hypocritical and intolerant person I am going to offend you. If you make it known that you are the previously mentioned type of person, I just might offend you on purpose.

 It appears though, that I may have inadvertently played a part in offending such a person. Which means two things:

1.) I am offensive to some people simply by existing.

 2.) I am incapable of being unoffensive to people whose panties are in a perpetual wad. I lack social "grace" as they say.

  I actually thought I was on my best behavior. Excuse me for being a liberal Athiest and not doing my best to hide it like a dirty secret. I mean, since you mentioned God giving parents special needs children I assumed that religion wasn't a restricted topic. By the way, not having everyone agree with you and praise Jesus with you isn't exactly the same as sacrificing a virgin to Satan in front of you. Just sayin'.
 
  Nobody owes it to you to tip-toe around your rigid beliefs to make you feel comfortable. If want chaste conversation and hand holding, go to church and not a fucking bar! I've got enough stress in my life without having to worry about the stick up your ass. Trust me.

 So, this is a disclaimer:  I don't care what you believe, who you sleep with, or what your disability is. I am willing to get to know you. I am going to be me though, and that means I am going to be an opinionated, liberal-minded, impulsive, and outspoken Athiest  I am not easily shocked or offended. If you find that you are of an opinion that counters mine that's fine. I'm a big girl. Feel free to express yourself, just allow me to do the same.

 If you are unable to deal with reality as it exists outside of a Baptist church then I'm not your type.

Falling Down

A new school year is starting and I have been frantically trying to tie up loose ends before Cole’s IEP meeting next week. The school district has hired a private therapist to consult and help us develop interventions. We’ll call her Kelly for reasons of privacy. This is woman is nothing short of an angel, and I don’t even believe in that kind of thing.

 She managed to get the school district to pay for a private psychological assessment and got them to agree to hire him a “personal coach” at school. She will also train the teachers on what it means to have OCD, ADHD, and Autism. The coach will have a psychology background and be familiar with ABA (Applied Behavioral Analysis; the Gold Standard in treatment for Autism). She will also come to our home to work with Cole. See what I mean? This woman is as close to an angel as you can get in my book.

  She’s also a therapist and a good one. She had me pegged from day one and I find that unnerving. You see, I am used to being able to control situations and maintain control. You aren’t going to see me cry at IEP meetings, I research everything and present facts with detachment. It’s not that I don’t feel anything, because a lot of times I go home and cry so hard I puke. I just have a hell of a Poker Face. I can't function any other way. It's who I am.

 Kelly and I have had many phone conversations and meetings. I think it’s safe to say we are friends. She knows I have OCD and “issues”. I don’t keep that a secret. I think I’m doing pretty damn well though; considering there was a point in my life where I was literally in the Asylum. At our last meeting Kelly gently suggested that I needed therapy too. I was a little perturbed, it’s not like I was crying or losing it. We discussed Cole’s “case” professionally. That’s precisely the problem she says. I don’t deal with my emotions and I channel them into advocacy, projects, parenting, and anything else I can do to escape my own inner turmoil
.
  That’s her theory anyway. Maybe it's a valid one. A lot of people are bothered by the fact that I don’t seem to have much of an emotional reaction to things that normally move people. I have had a lot of therapists try to get me to have a breakdown on their couch, because apparently that’s what “mentally healthy” people do. You’ve got to see me cry to know I am sad. Why is that??

   I am told I intellectualize things rather than just experiencing the feelings associated with events in my life. That’s fair. I do that. It makes me feel better. When my grandfather died, I didn’t really cry openly and I didn’t really discuss my feelings with people. I am not a Christian and so I felt a deep despair about the finality of his death. I went on a quest to find all the research on life after death and near death experiences. I had to find hope and comfort somewhere. I am sorry if I don’t get it from other people and their platitudes like “normal” people do. Does that sound bitter? I am not bitter; I just don’t find awkward hugs and empty words comforting. I wanted to reach out into the universe and find answers. I wanted to understand, because only understanding seemed to quell the pain inside of me.

  I feel like an alien. I really do. How am I supposed to feel or act? What is normal?


 I am tortured by the idea that children out there are not getting what they need from a broken system. One of them is my own child. You bet I am going to move hell and earth to make change. I can’t rest until I feel like I have done something. It isn’t a ploy to avoid dealing with my grief over Cole’s disability. In fact, I think I am a lot more like Cole than I am like the rest of you sometimes.

  Right now, I am emotionally raw. I feel as though I want go on an angry rampage, scream, cry, and run away from all this. My youngest son is showing signs of having some serious issues and I am up watching videos of him as a chubby baby playing happily and trying to make that image fit with the child who threatens to kill himself and punches me. I am gutted. I feel like a failure, I feel like I should be able to fix this. I am not strong enough to fight anymore. I am tired. I want to quit. I am overwhelmed and beaten down. It’s all there, I am a human being…

But, I will walk into the psychologist’s office tomorrow for Aiden’s assessment and I won’t let my emotions run the show. I won’t collapse, I won’t cry and I won’t quit.

I can’t.

 I start therapy next week...

A Trip to the Museum Puts OCD on Display

I took the kids to the museum yesterday. I had already prepared myself for the comments and “looks”. I have four kids, two of them are hyperactive and one of them is a toddler who thinks everything is a jungle gym. Even without Autism and OCD in the mix we are kind of like a traveling circus. I expect the disapproving stares and admonishments from staff. It is part of the territory when you have special needs kids and I try to be understanding and explain things calmly.

   When we burst in the door (because that’s what we do, there’s no single file and no taking turns, it’s a blob of kids trying to squeeze through the same space while bickering ) The lady at the front desk already has “the look” on her face. Cole shoots down the hall and Aiden runs towards the gift shop.

   The lady at the desk wants to ask a bunch of questions. I think she hopes we are not here to stay. I try my best to be polite, but end up abruptly excusing myself to go run down a child. I hear her comment as I am turning the corner, “They have a lot of energy! You have your hands full!” which I am convinced is code for “Your kids are wild and you can’t control them.”

    I corral everyone and repeat what has become my “public place mantra”, everyone needs to walk, talk quietly, do not touch anything, stay together, and we are not buying anything. Consequences range from losing game time to confiscation of My Little Ponies. Everyone nods when I ask if these rules are understood.

 Then Cole says “Mom, when we leave can we buy something from the gift shop?”

 I go over the whole thing again. Everyone nods again.

  And we’re off to explore the museum!

   

   Aiden is so excited; he’s talking 90 miles an hour and running from exhibit telling me everything he knows about the different animals. Cole is asking me how they get the dead animals and Chloe wants to know what “that cat-like-thing is.” They all talk at the same time and it’s so amazing because they all seem oblivious to fact that other people are talking. We read a book called “My Mouth is a Volcano” by Julia Cook; it’s all about interrupting or “erupting” as the book calls it. I remind them that they are all being erupting volcanos. Everyone giggles. The problem isn’t that they are rude; they are all so intensely interested in these different things and are so curious that their mind is spinning with questions. If one takes too long to ask a questions, the others look like they are about to explode. Aiden in particular says “um” fifty times in-between every word. “Mom, um, is um, um that um, an um, baby um, um, um bear? Cole’s face is red from holding in his question by the time Aiden is done.

I head straight for the “hands on” activities. By this time I am being followed by a few staff members. They kind of nonchalantly arrange things that were not out of place as they shadow us. Museum employees aren’t exactly as clever as the CIA.

   Cole sees a stuffed bear on display and begins to lightly rub its fur. I am actually thinking he is doing really well, he is being gentle and he’s not trying to ride the bear or anything.  Then I hear this voice from behind me

  “You may touch the bear, but use the back of your hand only please.”

  I am thinking it, but Cole (bless his blunt and honest little heart) just says it.

 “That’s stupid. Why would I do that?”

 The lady thinks he’s being sarcastic but he’s not. He just gave an honest appraisal of her request and he expects an answer. When she doesn’t answer him he asks again impatiently, 

  “What’s different about the back of my hand?”

I am not exactly on board with following stupid and purposeless rules so I am inclined to sit back and watch this exchange go a little longer.  The mom in me wins out and I intervene.

 “Cole, it’s rude to argue with the museum employees. We have to follow their rules.”

  I have avoided triggering Cole’s OCD by saying that he is rude and accusing him of doing something “bad”. Since he has a fear that he will do something bad, wrong, or harmful either accidentally or on purpose; actually telling him he did something bad would cause a full-blown meltdown followed by a cascade of rituals. The employee doesn’t think I reprimanded him enough, I guess, so she chimes in.

 “When you touch the fur that way it can damage it and these things are very hard to fix.”

OCD activated. Begin compulsions.

Cole freezes, his face fixed in horror. He begins talking rapidly, his hand flapping wildly “I did touch the bear that way!” he says that a few times. The employee now has a puzzled look on her face. Then he starts.

 “Did I mess it up? What if I messed it up? What if it can’t be fixed?” he becomes more and more distressed.

 The employee looks a little scared now.  Cole begins to frantically apologize by repeating “I’m sorry” over and over again. It’s not even directed at anyone in particular.  Then the lady begins to try to reassure him.

“It’s okay. You didn’t hurt it. Don’t get upset.”

I am pissed, but I can’t very well expect random people to understand OCD.  I motion for her to stop talking. Reassurance makes it worse, he’ll only keep asking. Cole is still in panic-mode and the bewildered woman looks like she is almost there too. I tell Cole

“You know this is OCD. It’s over now; we need to be done with this.”

 I walk away from the employee. I can only imagine what she was thinking.

  I am determined to brush off the incident and continue without visit so I direct the kids to the “Naturalist Center” where they can handle different rocks and preserved insects. I know Cole loves that stuff.

  When we step through the door a museum employee is standing there. He looks at us and smiles and asks if he can show us anything. Cole runs up to him, talking so fast that he’s almost inaudible “I might have messed up the bear’s hair, I didn’t know and I think I may have damaged it! I’m sorry! I’m sorry”

I grab his hand and gently guide him away and apologize to the man.

Cole blurts out “I’m sorry, I have OCD!”

The man chuckles and looks at me and says “I do too. Everyone here does.”

 Maybe it was meant to comfort me or reassure Cole. I don’t know, but my blood began to boil.

 I directed Cole to the rocks and returned to that man, seething. I try to keep my voice low and calm.

  “I understand you and your staff are trying to be helpful, but my son has disabilities and among them is OCD. Forget what you see on Monk or whatever other TV show you saw that makes you think you have a clue what OCD is, it’s a serious disorder and I’d appreciate it if you wouldn’t make light of it.”

 He looks hurt and apologizes to me profusely.

I feel bad for unleashing on the guy like I did, but every outing for me is a constant reminder that me and my children are “different” and I begin to resent people stepping in and making things worse.

   Chloe sees all of this and absorbs it quietly. Later she tells me “Thank you mom, for taking us to the museum. I wish people understood. We could have more fun if they did.”

I agree.