-George Santayana

My newshound Johanna sent me another article that my father and she must have been reading at the same time because their emails on this article arrived almost simultaneously.

As many of you may be aware of by now, insurgents in Iraq have been using the disabled as human bombs. It was originally announced that these women had down syndrome but the article sent to me this morning announces that medical records now say that they suffered from depression and schizophrenia but no record shows them having down syndrome. Seems obvious to me that either is equally horrific and predatory but I digress.

News reports at the beginning of the week (and included in this past Sunday Paper) stated that the acting director of a Baghdad psychiatric hospital was arrested on suspicion of supplying al-Qaeda with the women to blow up the crowded market places. One would think this was a good step in the efforts to protect individuals who are potentially impaired mentally from being used in such a manner.

Overall the article seems as if it’s going to wind up being a clarification on earlier reporting that these women had down syndrome and some discussion of how their mental illness might or might not have made them unwitting victims of terrorists. Then you hit this one little paragraph that almost seems as if it’s an afterthought.

Worries about insurgents using mentally disabled people as bombers prompted the Iraqi government’s decision this week to begin enforcing a Saddam Hussein-era law to round up beggars and the mentally disabled. Iraqi officials said the mentally disabled would be sent to hospitals while beggars would be taken to the police, foster homes, juvenile institutions or their families.

I guess in a country not used to having freedoms this might seem like an acceptable solution.  I must remember however democracy is an evolution. I live in a country who was founded on freedom yet we too have had periods in our history where segregating populations for safety seemed like an acceptable solution to perceived threats. Certainly “Indian Reservations” and even more recently Japanese Internment Camps should be historical lessons that others should make sure not to repeat. I certainly hope that the American officials will work to convince the powers that be in Iraq that this is NOT the solution to their problem.

So often you read stories and think wow…what progress we’re making for the rights of those with disabilities. Unfortunately it only takes one article such as this to remind us how very far we still have to go as a world society in protecting the rights of those who can not necessarily protect themselves.

If you might be one of these parents, let me assure you indeed are NOT alone. The experiences you are having right now are to be expected. Today I offer you links to two articles that I think would have proved helpful to me when I was starting this journey if they were available.

• You Are Not Alone: For Parents When They Learn That Their Child Has a Disability by Patricia McGill Smith

• The Unplanned Journey: When You Learn That Your Child Has a Disability by Carole Brown, Samara Goodman, and Lisa Küpper

While I referenced it in my first blog post I think it bears reprinting. New parents… Welcome to Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley

(c) 1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

In all seriousness though, I have some tricks that I’ve developed from years of having this issue intermittently. Maybe some of them will be useful to you.

• My top 10 list – I’m no David Letterman but I come up with a quick 10 things at the top of my head which I count as blessings. Some days I lump family & friends together, other days to get to 10 I name them individually. Something about making it to ten and realizing there are people out there who don’t have so many blessings in their life make it easier for me to cope with what God served up for me today.

• Break it up – when I think of all the things sitting on the plate that need to get done in a single day it’s EASY to get overwhelmed. When I make a to-do list and prioritize it that helps. Now I get two different mental highs – one from completing quality and one from quantity. Quality means knocking off a task that I rated as high importance. If I only get that one thing done though it can still leave me overwhelmed so I try to either break that one task into it’s elements so I’m completing multiple tasks within one bigger job or I look for a couple of tasks on the list that I can multi-task while I’m doing the bigger job (run a load of wash while I write a blog entry, fold a load of laundry while I’m on hold with a bureaucrat fighting for Katherine’s services) and now I’ve gotten several things done which makes me feel like I’ve accomplished more. The other thing breaking it up lets me do is get real. Sometimes I try to put too much on my plate because I think I need to be supermom. Putting it down on paper lets me get real with myself about what actually needs to be done TODAY – and put the other stuff to the side.

• Visualize – I think about how it will feel when I get it all accomplished. I let myself revel in that feeling for several minutes – then I go about recreating it by accomplishing.

• Force a smile. – Yup I lie in bed and FORCE myself to smile. Something about doing that for 5 minutes actually does make a difference. I know I’ve heard something about the science of the frown vs. smile but I just know for me it’s frequently the jumpstart I need.

• Let Go and Let GOD – You may not all have a specific belief system or you may be a born and bred staunch Catholic, Baptist, LDS, Hindu on and on but whatever your belief system believe this. There are things you can not control. Life happens. Accepting that is one of the hardest things to do. I struggle daily. If I remember that someone is there helping me get through no matter how hard it gets I can remember how much harder it could be without Him. I’m not advocating a specific faith but a spirituality and higher being who is with you on this journey. No matter how rough the road gets – throw it back up to Him and he’s ready to catch and hold on while you need Him to. The saying is Let Go and Let God and it goes along with my mother’s favorite which was God doesn’t give you more than you can handle. Occasionally I think she was not entirely right about that which is when I let him know that I appreciate His faith in me but I need a little extra help. Sometimes I say that silently in a prayer – sometimes I scream OK IT’S OVERLOAD HERE at the top of my lungs. It makes everyone around me look and laugh, including myself and then I find things lifted off my shoulders. Be careful you listen for the response. It doesn’t always come the way you think it will. Today it came in the form of my friend Laurie coming for a cup of tea and taking on the dishes in the sink and entertaining Donovan for an hour so I could type this up Yup – she is always on the list of blessings!

Do you have one thing that helps you lift up and pull yourself out of the pity party? Share!

She talked about the anxiety she has been feeling and how it’s a symptom of the lack of control in her life. Lord knows, having someone in your house with uncontrolled mental illness is to know TOTAL lack of control. We call Katherine the light switch – one minute she’s on, the next she’s off. Sometimes that cycle is 40 times a day, more recently only a few times a week.

I think that’s why I am such a control freak in other areas of my life. Those of you who have been visiting since the blog’s inception will know that this is blog look #3. I think I’ve found the one I’m in love with. And yes, I rearrange furniture, closets and cabinets too.

Anyone who knows me knows I inherited my father’s genes. I love him to pieces but neat – he’s NOT. I have truly found recently the cleaner my home is, and the less clutter there is the more it reduces my stress and adds to my feeling of calm. My husband will love to hear this I’ll never be as neat and clean as he is – but I can reach for the stars!

This is where I thought I’d introduce you to a blog I LOVE as I feel like I learn things about feeding this sense of calm. Unclutterer. This site is all about organizing and de-cluttering your life. I’ll admit, some of it I’ll never use – the style is TOO minimalist, but I consistently pick up tips I can use. I think my favorite day of the week is Wednesday when they come out with Unitasker – which is a poke at all the single use items that clutter up our homes. Gives me a laugh because inevitably they come up with things I have sitting in a cupboard.

Maybe they can add to your sense of control and calm. What do you do to add to your control and calm in a world controlled by being a special parent?

I know that over the years I have become far more introverted than I ever was in my earlier life. I have a very tight knit core group of friends. I have had people reaching out to me and I can frequently feel the anxiety rise. The harsh reality is that many of those people would likely be lovely, kinds souls. It’s never who is imagined in my minds eye however. I have this gremlin who tells me how horrified they will be at Katherine’s behavior, how they will knowingly tell me that Katherine’s disabilities are my fault and my doing and make me the social pariah of the eastern seaboard. Unrealistic? Completely!

My gremlin is pretty good at talking to me and convincing me he knows all – some kind of omniscient green thing with bumps. Think Sesame Street on a bad acid trip (please people the acid piece is just expressive not actual) I’m guessing some of you have a “friend” like this who tells you similar things. Actually we all have a gremlin or two. The question is how to quiet the dang thing so he’s just aggravating background noise.

As a great therapist once told me, the voice only has as much power as you give it. I have the choice to listen to it and give it’s word credence. He also told me that the more I can distract this gremlin the better off I’d do. I do know this – the more I allow that gremlin to enter my thought process, the more anxious and depressed I become. Sometimes this only happens once every few months, some times it happens several times in a week. Kind of depends on a number of influences not the least of which is Katherine. This is especially true in a week where Katherine is having an especially rough time or I am battling windmills trying to get appropriate services in place.

The reality is I spend an overwhelming amount of my time focused in on how Katherine feels. How Katherine is doing. Getting Katherine what she needs, and so on that I really have to remember to dial in to how *I* feel. As it has been explained to me numerous times by that great therapist I don’t do anyone, especially Katherine, any good if I get myself stuck in the gremlin goo. (it’s supposed to be a visual, let your imagination run wild) This got me thinking about how I deal with this depression and how other parents can too.

For a long time I didn’t even acknowledge it was depression. I wasn’t depressed – I was having a rough day (ok, so what if they strung together for days, weeks or months at a time) For a time, I needed medication and therapy. I tell you this because maybe knowing there’s another mom out there who needed help will make you not feel so alone. By the time I came off the meds, my therapist and I had developed a varied list of things I could do to fight off the blues which we all inevitably feel from time to time to keep it from gaining control. Sometimes I have less than 5 minutes sometimes I have a couple of hours after the kids are in bed. Here’s my list of 10 things to combat the onset of depression for a starter. Feel free to use the comments section to add what you use to fight off the blues as well!

• Take a walk – or a jog – or a bike ride – any exercise at all will help. It doesn’t even need to be a long one. It actually releases endorphins which combat the blues
• Read – sometimes all it takes is a few minutes with my mind in a good novel to remove the negative and break the cycle
• Start a project – make sure the project can be broken into multiple pieces – your the mom of a special needs child – you’re not likely to have an 8 hour stretch you can devote to a project – scrapbooking, redecorating a room, reorganizing some files, start a garden – I started this blog.
• Sleep – if I have time for a nap – even a ½ hour can make huge differences in my outlook
• Take out a cookbook, find a recipe and dare to try something new
  Take a big pillow and scream REALLY loud into it – sounds ridiculous and you may feel like an idiot the first couple of times but the primal release it gives – well there’s nothing quite like it.
• Eat WELL – sometimes I realize my mood is because all I’ve had all day is a cup of coffee – I don’t mean BINGE – I mean make sure you’ve fed yourself a healthy meal to give you the energy your body needs.
• Cry – oh I know, that sounds ridiculous – but honestly it releases that pent up sadness in a natural way – you honestly can feel better just having a good cry.
• Help Someone Else – volunteer to help the elderly, work on a community service project, donate time to a food bank. Yes, your life is hard – there are different kinds hard. Helping someone else can give you a real boost.
• Music – listen to a favorite CD – better yet, sing and dance along. Ok, if you can’t sing and dance just don’t do it around anyone other than your 2 year old who will just love the performance no matter what!

Please keep in mind that there are symptoms to more a serious depression. According to the Royal College of Psychiatrists you are likely to be in a more significant depression if your feelings of depression don’t go away quickly and they are so bad that they interfere with their everyday life. If you are feeling 5 or 6 of the below feelings I would strongly encourage you to seek out further help if you:

• feel unhappy most of the time (but may feel a little better in the evenings)
• lose interest in life and can’t enjoy anything
• find it harder to make decisions
• can’t cope with things that you used to
• feel utterly tired
• feel restless and agitated
• lose appetite and weight (some people find they do the reverse and put on weight)
• take 1-2 hours to get off to sleep, and then wake up earlier than usual
• lose interest in sex
• lose your self-confidence
• feel useless, inadequate and hopeless
• avoid other people
• feel irritable
• feel worse at a particular time each day, usually in the morning
• think of suicide.

Taking care of our kids is a HARD job. Taking care of yourself is critical to your child’s well being and overall success. Talk to a spouse, trusted friend or clergy member if you are experiencing the problems above. They can help you find your way to the proper help. It’s NOT weakness. You did NOTHING wrong. You CAN overcome it with the proper help.