Issues

Here is a glimpse into my very own ‘quirky’ brain and maybe a bit of encouragement or inspiration for you. Today while working on the computer, I was halfway plugged into my tunes so that I was still listening and monitoring the kiddos.

On comes a song that I feel in love with a while ago. Issues, by James Durban.

If you don’t know who James Durban is, let me share the little bit that I know about him. He was a contestant on American Idol back in 2011. There was something about him that totally won me over and I was a fan. Then he did a cover of Uprising by Muse. James’ version is very hard to find but totally worth watching. He didn’t go on to win the show but, over the course of it, we learned how special he is. Shortly after his father’s death when he was 9 years old, James was diagnosed Tourette’s and Asperger’s syndrome. Parents of our kind of kiddos know that Asperger’s is no longer a term used but is now called High-Functioning Autism. Other reasons to appreciate him aside from his talent is his devotion to his family and determination to not let his “issues” get in the way of what he dreams to do: of showing his talent. Not all of our quirky kids are singers or musicians but, they all have areas they are especially talented at. They all have dreams.

His song “Issues” has always spoken to me as an anthem of sorts for our special kids. His lyrics are simple, yet powerful. I can’t even decide which verses are the best to share– it all works so well. Bear with me and think about it.

If you were to say to me, if you ask what’s wrong with me/I would tell you it’s everything, when I’m tired and feeling sick/When it’s nothing you could fix/
I want you to know it’s not you

Cause I will never be o.k., this I know, but that’s o.k./Cause my eyes are never shut, while my heart is wide awake/And it’s all that I can do/Tell me, what else can I do?

I’ve got issues, I’ve got scars/In the colors just like yours/I was broken right from the start/I’m not different than you are/I’m not perfect, I’m perfectly flawed/And my scratches don’t hurt much at all/But just like you, I’ve got issues

There were smiles, there were tears, there were times through the years/When I could not remember yesterday, everything’s like a blur, /It loses me round the curve/I’m always in a high speed chase

And I’m tryna get control using everything I know/But nothing seems to work, we’ll never catch it/This I’m sure, and I will not forget you’ve been with me/Step by step

I’ve got issues, I’ve got scars/In the colors just like yours/I was broken right from the start/I’m not different than you are/I’m not perfect, I’m perfectly flawed/And my scratches don’t hurt much at all/But just like you, I’ve got issues

Am I in hell, ‘cause I don’t understand/Is this what they say it is, to be human
And these bandages I wear to keep out the cold/I tell them that I never know

I’ve got issues, I’ve got scars/In the colors just like yours/I was broken right from the start/I’m not different than you are/I’m not perfect, I’m perfectly flawed/And my scratches don’t hurt much at all/But just like you, I’ve got issues

(© 2014 Wind-Up Records, LLC)

One of the standard sayings in the Autism community is “Not broken, just different,” but here, James says he was broken from the start. Maybe our kids feel broken when they know that they are different. They have issues, scars and all that, but then, so do neuro-typical (“normal”) kids. Everyone has issues. Everyone ends up with baggage they carry. So when I hear this song, I feel like it’s a perfect fit for all of us, but especially our special kids. Be proud of who you are and know that you’re just like everyone else in so many ways.

Then another song comes on that touches me as a mother. This is where my oddity comes in. Let me set the scene.

I’m sitting, working away on the computer, half tuned into my feel-good tunes, and another song that touches me starts playing. I put the other half of my ear buds in and lean back, eyes closed. I really listen to it. I feel the emotions and, in my head, I picture figure skaters. I love figure skating; I always have. It’s dancing and I love dancing. I’ve always been fascinated by the choreography. The skill it takes to put movement to music in a way that tells the story. I have pretended I’m really good at choreography for years in my mind when that song comes on. I can just see a single skater sliding into a triple axel here or a spin there… Sometimes, I see a single skater, but normally I see pairs. It’s so beautiful and moving when they tell a story through their movements.

So back to the here and now. This next song is called In My Arms by Plumb. It’s a hauntingly beautiful song. As a mother, I picture sitting with my babies in the rocking chair and singing it to them as they fall asleep. I can’t help it but, I almost cry every time. Here are the lyrics to this beautiful lullaby:

Your baby blues/So full of wonder/Your curly cues/Your contagious smile/And as I watch/You start to grow up/All I can do is hold you tight

Knowing clouds will raise up/Storms will race in/But you will be safe in my arms/
Rains will pour down/Waves will crash all around/But you will be safe in my arms

Story books full of fairy tales/Kings and queens and the bluest skies/My heart is torn just in knowing/You’ll someday see the truth from lies

Knowing clouds will raise up/Storms will race in/But you will be safe in my arms/ Rains will pour down/Waves will crash all around/But you will be safe in my arms

Castles they might crumble/Dreams may not come true/But you are never all alone/
Because I will always/Always love you

Clouds will raise up/Storms will race in/But you will be safe in my arms/Rains will pour down/Waves will crash all around/But you will be safe in my arms

 

As a mother, it calls to mind the feelings we have deep down for our children. Maybe the combination somehow reflects the relationship between parents and kids of special needs. Maybe it’s just me that feels that way.

Hearing these two songs play back to back set my mind off on a tangent of choreography. I saw a single skater pouring his heart out about having issues, but then his partner comes on and together they float over the ice showing how much love they have and they will always be safe with each other. The songs overlap and it becomes this beautiful thing. “I know you love be but I have these problems…” “I don’t’ care about the problems, I’ll always love you anyway…”

I’m almost in tears with what I see, yet I could not do it justice if I tried to explain. I can’t do my imagery justice. Instead, I leave you with the following video of the free dance performance by the gold winners of the Sochi Winter Olympics in 2014. Maybe, just maybe, your mind will combine what you see with the oddities of my mind and create your own version of a winning program. Enjoy!

 

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When it Rains…

March was a rough month in our house and April hasn’t been any better. We have been stuck in a vicious cycle of sickness and “issues.” It started with C bringing a cold home, then I got it, and then dad got it. With my health already compromised from the Mono, I got hit hard. This was the cold/flu from the depths of beyond! It was different for each of us. C got an ear infection and congestion, took meds for the infection, then broke out in a rash for a week because it turns out that the illness was caused by a viral cold and the antibiotics caused the rash. Then I got congestion and, after a few days, got the ear infection. With experience learned from C, I skipped the doctor and treated the ear as I did for him without the aid of antibiotics. A few days after that, I got pink eye. Full-on glued-shut eye. After a few more days, I got laryngitis. That cleared after a week or so and I was left with the congestion which lead to a cough. Meanwhile, the hubs comes down with the same thing. He’d been filling in for me as best he could, making dinners and cleaning the house after working all day; generally being my hero, all while fighting this. It hit him hard in the chest rather than the head and he muddled through as best he could. Unfortunately, he gets bad enough to take time off work, yet he is still trying to help me rest and get better. I take on a bit more, he a bit less. E never really came down with anything – just a bit of malaise because we were all laying around sick.
So here we are, all home for about two weeks’ sick. The worst part of being so sick as a parent is that the children still have energy and want to “do” things. Adults want to curl up and die but, no, we still have to function as if we feel great, with maybe a few extra instances of resting between chores. On one of these short “rest breaks,” I was laying down chatting with my mom on the phone and I got the whole dry-throat-coughing-fit. We end our call and, as I’m sitting up, I coughed. The world went dark as a sharp, stabbing pain hit me full force in the low back. I’m suddenly crippled. I can’t move without leaning on something. What just happened?!?
I was worried. About 3 years ago, I seriously injured my lower back. I had been sitting on the floor of the living room struggling to dress my tot (as you do) for preschool so that I could head off to work. Something about the bent legs and reaching out to grab a squirming arm or leg as this kid keeps playing the catch-me game was just the right combination to do me in. I ended up with two herniated discs. Three months of bed rest and six of physical therapy brought some semblance of independence again.
I never want to get back to a place where I can do nothing for myself so, when I feel that stab of pain in my lower back, I’m scared. I immediately call out to the hubs and tell him what happened. In comes the cycle of ice and heat and days of bed rest. Really, I can’t say enough good about the man I chose for my forever. He has been amazing through all of our ups and downs. We both are worried that I’m headed back to a bad situation of the back so, he just takes over. I’m sent to bed.
After a week of self-imposed bedrest, he takes me to the chiropractor. Just in case I need help getting up again, he even came in the office with me. It turns out that (pause for effect) I had sprained a ligament in my low back, right about the same spot where my discs are injured, located just after the nerves are no longer protected by the spinal column. I’m in danger of permanent nerve damage if, for some reason, they end up twisted around themselves. This has partially started and is a dangerous issue with long-term consequences. So, back to bed rest and, the chiropractor actually forbade me, in front of my husband, from doing any household chores for the time being.
Wow, a break from myself. How often do we ever get that as moms? Answer: never. So, at first, I’m joking about needing a bell to ring, playing things up a bit; I’m having a stay-cation. However, 2-3 weeks in and I’m bored. I’ve been allowed to be up and move around, to do some light housework but still no laundry or anything that involves bending. I’m at that fine line where each day I start out feeling pretty good, and then I find that I’ve done too much at the end of the day. Each day I risk overdoing it to the point of a major setback. This hangs over my head day in and day out, warring with my desperate need to be busy and productive. It’s in my personality – I need to be doing things. So, I’m cranky and restless.
Last week my aunt came to spend a few days helping out. She is an amazing woman. She cooked dinners, played with my kids, and even moved furniture. I am in awe of her. I don’t know how I’ve gotten along all this time without that extra help. Then, this week, a dear friend came for a day and did the same thing. Cooked dinner, cleaned up around the house, took over school duties so I could rest. She even arranged a play-date at the park for C to get out and enjoy the weather, knowing that he hates playing alone and that E won’t go out because of his bee phobia.
Things like this, over the past few weeks and months, have made this rough patch a little more bearable. I’m more mobile now, able to cook dinner and, some days, do a bit of light housework. The biggest issue is not being able to do the laundry because of the bending and stretching in and out of the machines and folding.
That being said: Let’s talk about my day today. It starts out with the dog throwing up on our bed! Nothing gets you up faster than the sound of vomit whether it be a spouse, child or pet. So the dog is puking and I get him outside. We head back in, he eats breakfast and seems totally fine. Brat dog! I help the hubby get off to work with a nice breakfast and lunch and I turn to cleaning up my room. Thankfully both dirty spots super momwere on blankets so I can just throw them in the wash. Expect I’m not supposed to. I start stripping the bed and discover the mess has already soaked all the way thru to the mattress protector. So I strip and load everything into the washer that will fit. Our comforter is oversized and won’t fit in our machine. So into the bathtub it goes with a bit of laundry soap and I set it to soak. Then I go to wash myself up but I can’t get rid of the smell though. Ugh! So I change and wash again and, thankfully, I think it’s dissipating. Then it’s time to fix the kids breakfast. C says he’s not hungry. WARNING! This kid lives to eat, so I know something’s wrong. Sure enough, he’s feverish and just has that sick look. All I can say is, “Really?” Again we have sick in the house. REALLY?
Well, when it rains…
No worries, I got this, bad back and all!

Awareness

April is Autism Awareness Month. In fact, World Autism Awareness Day was April 2, 2016. All over the Internet, on Facebook, Pinterest and other social media sites, we are bombarded with images promoting awareness. We’re told to “Light it up Blue” for Autism. There are lots images popping up in support of autism, expressing feelings of being proud of our children and appreciating what makes them special. These are all great things but, honestly, it feels forced or fake. I mean, I love my autistic son just as much as I love my other child (who has, as yet, unidentified special needs). I agree that each child with autism is different and most don’t “look” autistic. I agree that they do things that make me proud, but there are those days…

One saying is that Autism is more than a diagnosis. Quite true. However, for so many families (like ours) it was a lifesaving diagnosis. The diagnosis shed light on all the quirky things that were going on that we didn’t understand. It opened doors that were formerly closed without a diagnosis; things like occupational therapy, assistance from the schools and many more.

One particular type of image that really gets to me are ones like this:

journey

To start with I do not like this photo. 80% of autism diagnoses are in male children. Diagnosis cannot be done before age 5 due to brain development, although I do believe there are indications from the beginning, thus “early intervention” techniques. I do agree that we are now on an unplanned journey and I do love my quirky kiddos, but let’s be honest here. There are days I don’t like them. In fact, there are days I really wish there were exits off this road we are on. A way to take a different journey; maybe the one I dreamt of or planned. To just walk away and not look back. Oh, how there are those days! In this photo and many out there advocating the love of our kiddos, this falls short. The child is neither male or old enough to have the official diagnosis.

One blog I recently discovered is called Autism in Our House. On April 1 she posted on her Facebook page the following:

Two years ago, I started a group of posts called…drum roll please…Autism In Our House for Autism Awareness Month.

Autism in our house is having to have the seams in your socks lined up just so but the ability not to notice wearing shorts the wrong way all day. Autism in our house is wicked sensitive. The kind where worry over someone can make him sick. He loves all living things…non living too…

Autism in our house is a week long struggle over finding the right mediation that insurance will cover. Autism in our house has co-morbid conditions ADHD and anxiety.

Autism in our house is almost always an explanation but never an excuse. Autism in our house is neither feared nor hated; it is self-advocacy, education and acceptance. It is growth through challenge.

#‎AutismInOurHouse may not look like autism in your house, and that’s okay. There’s room here for all of us.

I love the way she phrases things. I totally relate. I could basically cut and paste so many of her household issues. So many of us deal with the same struggles with our own kids, and yet we tend to feel alone. We all have various situations and I feel like the awareness campaign, while a great thing, doesn’t cover all sides of the issue. The campaign is about being proud, self-advocating, pushing for education and acceptance. What it doesn’t cover is the stress and emotional roller-coaster that each day presents, not only for the brilliant kids involved, but for the parents and families who support them. This is a hard journey to follow. It’s stress, tears (for both parents and kids), anger (again, both sides) and, sometimes, laughter.

So, the following is Autism in Our House:

  • Meltdowns over what seems like nothing
  • Emotional roller-coasters over seemingly nothing
  • It’s allowing them to wear whatever shoes they want, even if it’s summer and they chose snow boots because they feel good.
  • It’s cutting tags off shirts because they feel like thorns and Band-Aids just don’t fix that. (credit Fowl Language Comics ©Brian Gordon)tag
  • It’s taking the time to make sure the socks are on right and don’t have holes, aren’t “itchy” and come up the leg to just the right spot.
  • Constantly worrying over everything. Are we doing enough? Are we doing the right things? Should we or shouldn’t we medicate? and so on.
  • Arguing that, just because you mentally understand grown-up material, doesn’t mean that you are emotionally ready to deal with it. This includes books, movies and video games.
  • Arguing that, just because you fit the rated age, some shows aren’t good for you and over stimulate you, even cartoons.
  • Homeschooling and the daily battle to stay focused and do the work.
  • It’s allowing sweat pants to be worn in public because they are the only pants that can be worn, even though you swore you’d never let your kids do that.
  • It’s always being on edge when you are out of the house, not knowing if the next meltdown/fight is just around the corner.
  • It’s planning to walk out the door a half hour before you really need to, so that you can actually leave on time.
  • It’s spending way too much money every time you go to the store because you give in and buy what they ask for just to keep the peace.
  • It’s carrying a purse as big as a diaper bag to make sure that you have snacks, activities and a change of clothes for a short outing because you just never know.
  • It’s negotiating every meal just so they eat something.
  • It’s fixing multiple meals because what you fixed wasn’t what they wanted or because they changed their mind.
  • It’s not going outside because of bugs.
  • It’s co-sleeping, even when you swore that would never happen or they are just too big now.
  • It’s never having quiet time again.babysitter meme
  • It’s never having “dates” again with your significant other.
  • It’s walking the fine line of fairness to each quirky kid, while balancing age-appropriateness.
  • It’s realizing no matter how hard you try, something will seem unfair and there will be issues.
  • It’s playing judge and jury over every little thing.
  • It’s obsessions with Legos, Star Wars, superheroes, Dr. Who, Minecraft, rocks and gems. (Although, to be fair, that’s just good parenting.)
  • It’s an eclectic musical playlist
  • It’s never watching a TV show or movie in the allotted time, or watching the same show/scene over and over until you’re breathing it.tv
  • It’s leaving a destination early, even when you are enjoying yourself, because they can’t handle the people, the light, the noise or whatever.
  • It’s scanning Pinterest/Facebook and other places online for tips and tricks for ways to soothe or deal with one issue, only to find that it doesn’t work for your situation.
  • It’s spending hours and hours reading, researching and seeing doctors and therapists to learn how to best help your family.
  • It’s never feeling like our house is adequate enough to accommodate all the items that codoesn't lookme with helping your kids deal with their sensory needs.
  • It’s having people give you advice on how to discipline your children, or even judge your parenting skills because they don’t understand.
  • It’s having people be shocked because your child seemed “normal” to them.
  • It’s being constantly disappointed in the people that you naturally would have expected more help from.
  • It’s having charts and schedules on your walls instead of art, and constantly changing them because they don’t work and you want to try a different one.
  • It’s having every surface of your house covered in unfinished projects.
  • It’s depression and anxiety and self-doubt, both by you and them.self doubt
  • It’s toe-walking and attachment issues.
  • It’s multiple diagnoses (ASD, ADHD, ODD, SPD, etc.) waring against each other.
  • It’s finding surprising overwhelmedmoments of humor and joy and love.
  • It’s pretending to be fine, even if you feel broken inside.
  • It’s this and so much more!

It’s an “adventure with quirky kids.”
This is my Autism Awareness.

I Love Change but I Don’t

Okay, now on to the other big thing going on in our house. We are going to remodel! We love our place, but it is just too small. Officially, we live in a one bedroom, one bath apartment over our garage. We fell into the “build the guest space/in-law suite and live there while we build the main house” trap. Now, about 8 years and two quirky kids later, we’ve run out of room.

By nature, I’m an impatient person; probably one of my bigger flaws. I hate waiting!

Sidebar: I’m cracking up as I type thinking of one of C’s favorite book by Mo Willems, Waiting Is Not Easy! If you’ve got little ones, Mo Willems is a great children’s author. My kids love all his stuff!

So, here I sit, waiting and hating it. We knew that we would, one day, reach this point. We knew we would outgrow this house. But, we love it here. We have privacy. It feels secluded, yet we’re just minutes from our small town. The house itself, sturdy and well-built by my late father-in-law, is so nice. It’s just too small. So, we have kicked around the idea of what to do for quite some time. Do we move or add on? build a main home or remodel? So many options. I love change so, right from the start, I’m all in. I scour the real estate listings. I do research. Could we rent out our house for enough to cover a second mortgage? On and on it goes. Change doesn’t come as easy to the hubs and, understandably, he wants to stay here, in the last home his dad built. It’s a special place, yes, but what about our family’s current needs? I actually found a place that I loved but, on digging deeper, I didn’t like its location. It didn’t feel like it was the right location for our family and it wasn’t private. The more I looked, the more I found that everything paled to where we are now. If only we had more room! Finally, I agree that it’s best and probably less expensive to remodel our current home.

So, we start working on plans and things begin to fall into place amazingly quickly. We have funds lined up, plans we are happy with and we start interviewing contractors. It should be exciting and “happy happy” here, and I am… but I’m not. I’m also nervous and anxious over how stressful it is going to be for the kiddos and, by extension, me.

E has growing anxiety issues lately. One new thing that has come about is a fear of strangers in the house. I never even thought about that but, he’s worried and stressed about people he doesn’t know coming into our home. It doesn’t make a difference that Mom and Dad are okay with this person or that person. He is excited about the changes but, the fear and anxiety are stronger. In trying to fix one problem, we may have unintentionally added another. This poor kid. What are we going to do?

Meanwhile, Mr. C has been getting increased attention from us because of his issues, making E jealous and needy. E is acting out more, has a shorter temper and C loves to “poke the bear!” Flash forward a few weeks and C is flat out refusing to go to school any more. He is insisting on doing school at home too. We have been fighting him with this issue since he started at the public school and it’s reached its breaking point. I can no longer do this fight each morning. This is a battle I choose to lose. My life is a constant series of battles and I concede defeat on this one.

So the papers have been signed and the change has happened. Now I live in a house that is about to be remodeled with two home-schooled quirky kids, and I have no idea what to do. Homeschooling one was hard. To add a second with different special needs is insane but, honestly, it has been so much easier than I expected. I get to stay in bed just a few minutes longer and actually drink my coffee sitting down rather than while running here and there in the mad dash to force this child or that one out the door on time.

The hardest part is when C is having his “off” days which, sadly, are happening more and more. He gets frustrated that he can’t get his words out and then he refuses to keep working. If he makes one tiny mistake, it’s all over. He has to get 100% or he’s failed. He is taking more and more of my attention both in regular home life and as a student.

We have had one session with our therapist and C. The therapist’s initial reaction is that the issue is some type of Executive Functioning issue, but which one? We don’t know. What we know is that the toe walking, the sensory issues, the emotional sensitivity, the nightly fight over what he will actually eat for dinner, and the frustration he has at not getting his thoughts out are pointing at something. We just have to follow the clues.

Time to pull out the detective hat and, as Sherlock Holmes put it: “Come, Watson, come! The game is afoot. Not a word! Into your clothes and come!”

Eye of the Tiger

Last month there was a day called: International Women’s Day. Unsure of what that even means? Don’t worry. I put trusty ol’ Wikipedia to the test (https://en.wikipedia.org/wiki/International_Women’s_Day). Here’s what it has to say:

International Women’s Day (IWD), originally called International Working Women’s Day, is celebrated on March 8 every year. In different regions the focus of the celebrations ranges from general celebration of respect, appreciation, and love towards women for their economic, political, and social achievements. Started as a Socialist political event, the holiday blended the culture of many countries, primarily in Europe, especially those in the Soviet Bloc. In some regions, the day lost its political flavor, and became simply an occasion for people to express their love for women in a way somewhat similar to a mixture of Mother’s Day and Valentine’s Day. In other regions, however, the political and human rights theme designated by the United Nations runs strong, and political and social awareness of the struggles of women worldwide are brought out and examined in a hopeful manner. Some people celebrate the day by wearing purple ribbons.

Huh. Okay. Now we know. I only bring it up because my internet music station of the day had suggested playlists featuring Women Artists of various genres. Tired of the repetitive sounds of the video games in the background, I scrolled through all the genres and made my own list that put me in my happy place. Man, there are some great works of art out there! Once I put my music on, cue the kids to start whining for “their” music list. In my mind, my inner child is screaming: “NO! Mine! Mine!” (add foot stomping). I actually say that, since they are playing in the other room, I get to pick the music at this time. There is no diplomacy.

I’m a musically-motivated person. It sounds funny but, it’s true. If I need to get stuff done, I do it better and quicker with music playing in the background that I can sing and dance to. It’s amazing how fast time goes when I’m “plugged in.”

Music helped me get through my day and get things done. It broke down the wall that was keeping my thoughts jumbled and helped me with some creative crafty projects today. Lately, I’ve been knocked down repeatedly but, each time I get back up and fight a little harder. It’s like that Sara Evans song, A Little Bit Stronger. Each day I get a little stronger. I just keep going, one step at a time.

Another song of inspiration for today is one of my kids’ favorites: Katy Perry’s Roar :

“Get ready ’cause I’ve had enough. I see it all, I see it now.
I got the eye of the tiger, a fighter, Dancing through the fire
‘Cause I am the champion, and you’re gonna hear me roar”

It’s like Apollo Creed said in Rocky III:

“If you stand toe-to-toe with this bum, he’ll kill you. It doesn’t take a man to stand there and get your head beat off! He’s just a man, Rock. So, be MORE man than him! Go get him; Eye of the Tiger!”

I’m going toe to toe with life. If I let it, it will knock me down. I have had enough. Enough sick, enough fatigue. I’m fighting back. Starting now! Eye of the Tiger!

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