Normal isn’t necessarily a good thing.

A brochure about explaining autism.  (http://www.handsinautism.org/pdf/IHAbrochure.pdf) I kind of wish I had this the other day.  My 10 yr old brought home his school bag and I found they did a “Me” exercise in class this week. He had written all sorts of things in the giant bubble letters of M and E.  Things like scary movies, legos, and action movies.  I saw on one of the lines of the letter E, he had written Special Needs.  I asked him if he wrote that himself and why he wrote that and he replied, “I don’t know what it is but I for sure know it is me.”  My heart broke.

We began having the talk about special needs, ADHD, autism and anxieties last year. Its a very hard concept for me to explain and he is a concrete learner. Things must be black and white for him to grasp a concept.  So I tried again.  I tried explaining that if you lined up 10 children from his class they all would be 5th graders and they all would be humans.  In that way, they were all the same.  I went on to say that those 10 children could all have different color hair or different color eyes. They could each have different height or weight.  I explained that those differences are visible and they help to make each person who they are.

I told him having special needs doesn’t make him any more or less than any of those 10 children.  I told him nobody can see his special needs, its inside of him.  It means that his Autism makes his brain work in a different way than most of those 10 children.  That sometimes he has trouble learning the same way they do or doing things the same way they do, but with just a little extra help (his special needs) he can go on to do amazing things JUST LIKE everyone else.  He will still be a 5th grader, he will still be human, like others in his class he will have brown hair and brown eyes, but like everyone else he will be unique.

Today was the first day I saw this brochure.  I encourage you to talk to your kids about their differences and the ways they are just like everyone else. We wanted him to feel “normal” by not talking about this at an early age.  Shame on us.  There is nothing wrong with deviating from the norm.  We have realized as he has grown how very wrong the opinion of trying to make him fit in our world is.  If nothing else, the world should be trying harder to fit our children.  They are our future, and they are great just the way they are.

Misplaced Guilt – The Monster Inside of Me

Someone asked me a while back to put together my story, my testimony almost if you will, about our journey with a special needs child.  How do you even begin that story? Parenting is a whirlwind but life since Einstein has been surreal.  Often times it all becomes a blur how we got to where we are now.  So many doctors, tests, medications, rewards, behavior modifications, milestones, setbacks that it truly is hard to wrap your mind around 9 years of your “story.”

But the reason it was mentioned is a valid and good one. The need for the story to be told is real.  So how do I swallow the overwhelming guilt that comes with telling our story? Thats why I haven’t written it down.  There is that overwhelming fear that someone somewhere will read our story and say, “Right there! That’s when this happened! Thats how he became who he is and its all your fault!”

Yes I’ve been struggling for two months only to realize that I can’t write word one because I am still fighting the monster in side of me that feels like I somehow am the cause for his ADHD, his aspergers, his ODD and his anxiety.  Something I did, somewhere I lived, someone I knew, somewhere I lacked….I must be the most amazing superhero powered mother of all time because I DID THIS. I mutated his neurological network by my actions.

When will the lies stop running through my head. There is nobody to blame. This couldn’t have been changed. My son is beautiful inside and out and intelligent beyond all means and a wonderful loving brother to his siblings and loving to his family.  There is nothing wrong with him so why do I feel guilt. He is different than societies normal. He needs assistance in different ways than others. Some kids need tutors,  its not so very different from a behavioral therapist. Some kids need braces,  he gets sensory assistance.  Why do I listen to so many stigmas that have been shoved in our face from society instead of my heart and God’s love that has shown he loves all his children. He doesn’t just love the easy children.

I hope to start writing our story. Simply starting to write why I have been frozen in fear is my imperfect progress for the day. I am desperately getting down on my knees and asking God to take this monster from inside me. Release me of its chains. Help me to stop torturing myself so I can help others better.

Phil 3:13, “…this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before.”

Where were you when…

So you’re angry now? Something MUST be done?  Where was your anger before? Why weren’t you angry as the single mother was told they couldn’t help her son? When they sat and played with him and said he seemed perfectly normal to them after only an hour. Why weren’t you angry when CPS was called on that same Mom for restraining her child during a meltdown? Where was your anger as people sneered and made comments as her son overstimulated from the noise and lights and things in the grocery store lashed out in need to flee from it all? The mother wanting to protect her child from it all but needing groceries to feed her family.

Where was your anger when the parents simply looking for someone to watch their child so they can feel he or she is safe for an hour were told they had to wait three years to get on a waiver that would provide someone trained to help them?  Where was your anger when the Mom and Dad wept as they had to call the police to put their child in an ambulance because he or she was so violent during an episode they had no other choice?

Where were you when a Mom lay curled up with her other children for fear of what her child might do at night? When her tears stained the bedsheets and she had no where but prayer to turn? As she took every day items and hid them under lock and key never knowing before how scary a simple thumbtack could seem?

When the government decided to fill their pockets and turn away thousands for medication and therapies in desperate need…were you yelling then?  When the child was teased and bullied for being different…were you standing there yelling to defend him? Were you telling anyone something needed to change then?

Were you standing next the Mom or Dad as they searched through hundreds of documents and facilities to see if anyone helps children with emotional and neurological disabilities? Did you hand them a tissue or offer an ear?  When they were told there is no support for “just mental health issues like his” -Where was your anger then America?

You scream about justice needing to be done, where is God, outlaw the guns as parents everywhere are ashamed to even voice who their children are out loud for fear you’ll name their child next as the enemy.  We sit quietly in the shadows looking out in desperation. We are given no hope. We advocate, we research, we cry, we love them with more passion than you’re five minutes of caring will ever know.

When three people held down a child for an IV to administer another test for another hoop to jump through on the road to getting no answers…where were your words of comfort then?

When the child stood on the sidelines and watched others play, sad and alone not knowing how to change it, why no anger then?  As our 6 and 7 and 10 year olds threaten to just disappear, to run away, to never be born to make it better themselves, as they receive no answers from the adults and parents that are supposed to protect them and know how to make it better – you sit at home and yell fix it from the comfort of your chair.

Where were you when the child that needed you cried out for help America.

Where will you be when this pain too begins to fade, and the children and the parents who need the help the most are still crying?

Changes

Life is always about change. They say if you can’t adapt you die right? Personally I’m not a big fan of dull monotony so I’ve never had a problem with life evolving.  Am I going to change? Heck no.  At least thats usually my mindset.  I really would like to change. I’m quick to temper. The littlest things get on my nerves. I have a chronic illness that leaves me in pain or forgetful or just plain tired all of the time.  I have a house to run and three kids, two dogs, a cat (who is soon to relocate FINALLY) and a husband.  Yes the husband comes last when he should be first right? 

I feel the winds of change coming and I find my internal dialog resembling a bucking bronco. Its kind of like that movie where he keeps seeing  wild stallions running free all beautiful and majestic and then suddenly the lasso comes into the shot.  I think it was The Bachelor. Cute movie, but the only relevant part of that is that I don’t want to conform or change. I’m comfortable having to control everything and everything having to go my way.  I wasn’t raised a spoiled brat with everything handed to me on a plate. I have no idea where I got the everything has to have a place mentality. I know where the control freak came into play. My Father was very much a things have to go my way kind of guy. 

Before you freak out, this isn’t about to go into my childhood. Nobody needs to hear about that just yet, I’m just getting you to like me. Why would I run you off now?

So back to the changes I feel brewing. The first change is the most tangible one to grasp. My son, I’ll refer to him as Einstein from here on out. He is so much like Einstein. Completely brilliant but just doesn’t seem to fit in the regular world.  Einstein is growing up.  He is in fourth grade now and no longer a little kid in school.  Its not going easily for him in the big world.  He struggles at school, but more so at home.  Its hard having two very strong personalities under one roof.  It reminds me so much of my Father and I constantly ramming heads because our ideas had to be the only way. Again with the animal references and the flashbacks into the past. 

Point, I had a point. Einstein is switching his medication today.  We struggled for 7 years without medication and finally made the choice two years ago when his schooling started to fall behind.  Fast forward two years later, hundreds of counseling visits and doctors appointments and success mixed with failures and I found that the original medication had run full circle. We were back at square one. His grades are dropping, our outbursts nearly constant at home, our moods were swinging full tilt and both very unhappy.  I say “our” a lot there.  Any parent of a child with emotional and behavioral special needs is sorely aware that your child does not experience these highs and lows alone.  You pull your hair out with them, you endure the punches (sometimes literally) and the tears.  You feel each joy and disappointment and sometimes you throw a fit right with them.  This is my and Einstein’s curse. Its like an invisible umbilical cord that will never be cut.  They are there for my other children, but not nearly as palpable.  Being someone’s advocate makes it so very personal.

So here we are at day one of new medication.  We’ve left our crappy therapist behind for a better alternative that encompasses school and home. Right now, two hours in to the new medicine, my son has volunteered to help with laundry.  Its happened before but its been a long time since he wanted to help.

Onto the next change, we are preparing for my daughter (from here on out to be called Drama Momma) to enter high school next year. I don’t know how it works in other houses but its a big decision in ours to decide where she will go to high school.  Generally you go where the district high school is and end of story right?  Well there are two high schools here. One gives you an associates by the time you are graduated and one doesn’t. The Mullet (my Ex) and I were really pushing towards my daughter going to the university high school that gives her a degree. Perseverance on Drama Momma’s part has me convinced she should go to the mainstream high school that has a better language program (she wants to be a translator) and keep on the honors track. She can also take AP courses for college credits there.  I’d love for her to be a sophomore when she arrives at college.  Drama Momma is one of my best friends and worst enemies these days.  I don’t want to think about college yet, high school is hard enough!

Moving on to son number two, Monkey Boy. He his 16 months old now and still not weaned.  I’m going to miss it but I’m desperate to be less co-dependent.  Funny thing is if things go as planned a year from now we’ll be starting the process all over again and I’ll spend another year or two begging for some Mommy independence.  I love my kids but I feel like a vending machine.  Monkey Boy is the least of the changes.  He is nearly perfect in every way.  That is because he is 16 months old and hasn’t had time to be his own person. He will soon spread his wings, starting with weaning, and the real changes of time will begin.

For the biggest change of all I feel is coming, my marriage.  My only experience in marriage is this one. I’ve only had past failed relationships. Two of which resulted in Drama Momma and Einstein.  My three year anniversary is tomorrow.  We aren’t in a good place.  Eeyore (my husband) and I have always had our struggles but he is now very depressed and has refused all attempts at finding a way to get better.  I personally believe he suffers from ADD.  I think his feeling like a failure because of his symptoms of the ADD has made him very very depressed.  It has affected us as a couple, it has affected us financially, it over the last year has affected our children.  It is a black hole in our relationship.  As we approach our third anniversary I wonder if there will be a fourth.  This is the one change I’m not sure which direction it will turn.  This is the change I fear the most.  I know that as my marriage moves forward we both have to grow and change together. I just don’t know if my wild stallions are ready to be roped or if my husband will show up to the (bad pun coming) rodeo.

I feel like I’ve rambled on for hours now.  The winds of change are approaching in so many areas of my life.  It feels very much like Dungeons and Dragons…should I choose to accept my quest?

Where do I fit in?

12 hours in 90s (Photo credit: Astro Guy)

So once a year the doctor makes women come in and remember to take care of themselves. Some women avoid making this appointment at all and others do it obligatory but complain about the whole process. When I made my appointment this year I was excited to get out of the house…alone…for me time. Yep! You heard me right! The word Pap smear is now associated with ME TIME?

So sad are the lives of the stay at home parent when you honestly feel like that. Even worse is that my appointment resulted in 3 more appointments thus far. I asked about some moles at that appointment. So I got two more appointments, removal and stitch removal. They were benign. I had my body altered for nothing, but they found cells that indicate they could have turned into something, so it was a good thing.

Fast forward past trying to keep a 1 year old off stitches and from picking at my wounds to about 2 months later when one of them hasn’t healed. Now I’ve already managed to take my husband and baby to 2 appointments on his days off and I have to schedule yet another appointment to have this thing checked out. But when? I’ve already far surpassed my Mommy allotted away from the house time, for like the next TWO YEARS! Does that seem a little exaggerated? If it does you are NOT the typical stay at home parent. You must live in a more functional universe than any SAHP that I’ve ever met.

So this morning I found myself, during fall break vacation when we should have some sleeping in, I’m getting up at 6 a.m. to get to an appointment I’ve made at 7:50 a.m. I can barely function to make coffee this early in the morning. My husband is staying with the two boys but has to leave the house no later than 8:50 a.m. to get to work. It’s a gamble that the doctor’s office will see me in time. This time, the gamble worked. If the antibiotics work I’ll be done with my “me time.” Which, by the way, I’m no longer excited for my “me” time. I’m tired of this particular brand of torture. If they don’t work, I get to go back for more shots. I’m so thankful that all this preventative health care was so quick and painless.

So what have I learned? I’ve learned that there is more time available for me to be away from the house than I first thought. Its amazing how time suddenly became available for me when it was medically necessary. I wasn’t making time for ME to fit into the works. I’m going to be taking more time for me, sans the needles and stitches and horrible waiting rooms.

Next year, when I schedule that annual visit, I hope I dread it. I hope it’s obligatory and seems a waste of my time. I honestly hope I’ve learned to take more me time for enjoyment so that I can be a better me for my family. I also hope that I never hear the words mole removal aimed at me again. 🙂

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Remodeling from the inside out

I honestly thought when I started this blog so many years ago that I’d use it daily. I’d become an instant overnight sensation on the web and finally find some direction in my life.  Since starting this blog I went back to work, left that job, became a stay at home mom AGAIN and had another child.  Now I’m not just the parent of a teenager and a son with special needs, but the mother of a toddler too!  So I find myself balancing the act of paying the bills, mending the house, grocery shopping, staying up on appointments and medications and the newest research on ADHD/ODD/Autism/Aspergers, helping with poetry homework and hairdos and giving makeup advice.  I find myself knowing that I’m never going to be enough for everyone and that my poor husband is usually last on the list of who gets their needs met. 

Why do I do it? I find that I am also on the receiving end of really well cooked meals that I never had time to do before. Hearing the stories of my kids days at school and laughing and smiling with them. Making the time to cuddle up in bed with a child who most recently has seemed too old for her Mommy.  I find I spend weekends learning how to make fake snow at a Science fair or carving out foam pumpkins to do an egg drop. Before when I had to work full time, I never had time for any of these adventures.  I’ve also been home to experience every one of my 16 month olds firsts.  In the past I had to use the “well it was a first for me” excuse when my child performed their new found mastery of a skill for me after the babysitter had seen it all day long.

So, I’ve been looking for a direction with this blog for so long now.  I wanted to do something big..make a difference in someone else’s world.  Instead, I’ve finally seen the light.  I need a place to make a difference for me. A place to put it all down the good, the bad and the ugly (because lets face it it can get pretty ugly!) so that I will have a place to go back and reflect and give myself some perspective. 

So if you happen to stumble upon this my public journal of sorts bear with me. I’m under remodeling. I’ve been trying to be  superwoman with only a lasso and life is about to get real interesting around here.

Dr. Ricki Robinson to Host a Family Services Q & A

Dr. Ricki Robinson to Host a Family Services Q & A.

His, Hers, Mine, Ours….

So the question came up today on where do the lines get drawn between the ‘us’ in a relationship and where the ‘us’ stops. It really wasn’t something I had thought about in the past. I’m always encouraging my spouse to think more in terms of the us and less like a bachelor as he did for so many years. Today I realized the perhaps I need to be more specific in what I want to receive!

We’ve all done it, we all go to our coworkers with the details of home life. Some of us do it for advice on how to get through. Others share daily life to brag or make someone else laugh. Until recently it had never occurred to me how much this really happens. As I think back on my days as a working mother, I remember many a day spent picking a coworkers thoughts on what were private, personal topics that I needed unraveling. I admit doing that very thing came back to bite me once or twice before I was much more picky about what I shared and didn’t share about myself. But what harm is there when you share about the other people in your life?

The harm comes in when you realize we’re no longer in a day and age where the only time you ‘socialize’ with people is at the company Christmas party. Our society is all about being socially networked now. I run into many an instance where someone I’m related to is friends with someone from where I graduated high school. I would never know that the loop existed without facebook and myspace putting it all out there for me to see. I realize much more how things you say get around.

So the question was breached on in a marriage or other just as intimate relationship, what information is fair grabs to share with your coworkers and what isn’t? Do you want to walk up to your significant others coworkers and suddenly realize they know what side you sleep on, whether you drool at night, and how you prefer your coffee? Would you rather not be the topic of conversation at all? Granted you are a very important piece of your husband/wife’s life. You’re bound to come up in not only conversation, but in comparisons to other husbands and wives. The real question here is where does your private life start and stop and should you have to define it?

Personally I’ve found that I’m not comfortable being the center of conversations. I’d almost rather not know that anything was discussed about me at work that day. My children’s lives and anecdotes are free game, but I’m actually quite a shy individual and like to be in control of the picking and choosing what is revealed about me and to whom. The very writing of this blog is a bold step for me…and you’d better believe that many a entry is filtered to keep it private from certain prying eyes. But I also know that I believe I need to write again, I need to share parts of me that I haven’t in the past in order to grow. It helps to see my life have meaning (and confusion) in writing so that I can go back and remember.

I’m sure there are many out there that do not mind being an open book. Where do you stand?

Autonomy and the SAHP

I think the hardest part of being a parent who stays home is finding some personal independence. Your world seems to revolve around taking care of all the individual needs of others, rather than anything having to do with yourself.

A typical day includes figuring out how and what to feed everyone else and where you will find the money to get said food. To get said food you must plan a meal plan for the week, clip all the coupons and do all the sale research, and carve an annoyingly large chunk of time out of a day to go do the shopping for said food. Where it provides a wonderful cardio workout, one does question why shopping has to be a contact sport rivaling rugby. Then there is the laundry, taking care of the family pets, keeping track of all the doctor’s appointments for sick kids, scheduling the appointments for the not sick kids, dentist appointments, school events, making sure you go see family members on the rare occasion you have a free weekend day, and trying to schedule your children to have free time just to relax. All of that is just a brief scope of what it takes to stay at home and “simply take care of the house and the children.”

When I worked outside of the house I juggled all these things and a job. I’ll have to say I found it far easier because I was able to escape all the little details of my house for X number of hours each week. I found self-satisfaction in being able to control 85% of my time exactly what I would be doing without interruption or disaster. At home, none of my time is really mine. A child or phone call or some animal mess is always bound to reschedule what I thought were my plans to make. Nobody is there to ‘show my hard efforts to’ and the mess has already started to reappear the moment I accomplished clearing it.

The stay at home parent is truly the hardest job I’ve ever taken on in my life. I do not love cleaning up after people full time, but I truly enjoy every second of watching my kids grow and learn. I wholeheartedly love being able to support each of my family members in their endeavors. But it brings to mind the question, where do I fall into the mix? How do I find my own personal independence while striving to support everyone else’s? Which brings about the next question: how do I have my own personal independence without being selfish in doing so? For years I wanted the ability to stay home and take care of my children. I missed so much of their lives for the 10 years I battled to work a job and raise them, despite my failing health. Now that I have all of that, I’m bold enough to say that its not enough just to raise them…I need something for me too.

I’ve spent hours over the last three months sitting to nurse holding my newest son. Its given me much time to think and explore what I feel my needs are and what I’m going to need in my life to stay happy. The last thing anyone wants is for their life to become stale and mundane. I have many passions that have fell by the wayside over the years. It was rare for me not to have a pencil in my hand doodling something or a camera snapping away for a photograph. I have always been on the creative side of things; diving my nose into the stage crews or onto the stage itself, singing in a choir or playing the piano to accompany them, and my musical interest behind an instrument as well as having a constant melody playing on the stereo. I know that I’m going to have to find a way to bring a piece of that into my life again, yet the puzzle has changed its shape.

So the next few months are going to be spent reopening friendships with not only people but reopening my creative endeavors and trying to fit them into my domestic lifestyle. I hope, as I’m sure many mothers do, that it is possible to raise children and still find time to just be me. That is my goal for this year. I know it seems a little late in the year for resolutions, but I’m not giving up anything but striving for a goal. And if you’re lucky enough to be reading this, you get to join me in my journey.

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Marsh – Fresh Ideas for Education.