New Year's "Objectives"

Photo By: Withrow

~Happy New Year~
Welcome 2009...

New Year’s Eve is my favorite holiday.

This year/last year, 2008, I’m sitting on my laptop, or rather in front of it, (sorry for that picture) writing this post, willing away a headache with a candle and TV on. My husband of 5 years, officially today (New Year’s Eve) is asleep above me, the bedroom is above me (again, sorry for that picture), the house is all but quiet, the kids safely and warmly in their beds.

As I sit here, I find myself reflecting on New Year’s past; the one we got married on, the ones I’ve spent with my parents, with friends…even the one that found me and most everyone else dancing on a bar – until I fell off. I think about all the things that have happened in my life that have led me to the life. I think about what I want to be reflecting on exactly one year from today (hopefully without a headache and not falling off a bar). So, this year, I’m not going the resolution route.

New Year’s Resolutions don’t work well for me. There’s a ton of anxiety about, “ut oh, this is the last time I get to shove this forkful of bean and cheese burrito smothered in green chilie sauce and sour cream in my mouth…I better order another one”. (Now I’m hungry).

This year, I’m doing New Year’s Objectives; things that I’d like to work on or towards, but will be considered a continued “work in progress”. No specific end, no specific calculable goal, just objectives to keep in mind while wading my way through 2009.

Now, I’m certain you’re dying to know what these are…so, without further adieu, lift the curtain please….

1. Many of us say the most important people in our lives are our children, but we forget about our partners. For me, my husband Zach is right up there with my kids. I could not have married a more charismatic, caring, boyishly fun, cute handsome man. He puts the weight of the family on his shoulders and carries us wherever he goes. We are never far from his thoughts or his actions. He is our kid’s favorite toy and very honestly, I could not imagine having experiences all that we have in 5 short years with anyone else. Without him, this family would have fallen from the wings that carry us and broken beyond repair. He is my strength, my best friend, my lover, my confidant and my playmate. I need to take care to tell him so more often. I need to take care to care for him more often.

2. My son is a mess. Honestly, something in me tells me that it’s all simpler than this. Couldn’t it be? Med upon med? Should that really be how it is? He now has constant dark, hard, dark circles under his eyes. He lashes out unexpectedly, even unexpected by himself. I don’t want any more meds for him. I want him to sleep and allow his brain to rest. I want him to be able to be free and fun as we know him to be…not this shell of pain that he has become. That’s it – he seems to be in internal tumultuous pain. I have to work towards finding a real solution. Research. Talking to resources. I need help to help him. Gluten free diet? Maybe. And I’ll do it with him. I just want him happy again.

3. My other kids need me too. They need me to do with them what I had started to do with Alex, until I found that he was not capable (at the time) to do so. I will teach them more, paint with them more. I want to open their eyes to the world, show them everything. I want to do flashcards, more reading, projects, walks, just more. I want to do more for them. They deserve more of me, right?!? My Violet is so extremely bright and articulate. She potty trained herself at 22 months; I think she can handle more! My little crawling almost walking Ben is into everything. He wants to see more, experience more, find out what the world, his world, is like. I want to show him.

4. Take more time for us. Meaning, more breaks for Zach and I. More “special” trips for the rest of us.

5. I want to lose weight and keep track here like I see others do. I think it’s a great idea and I truly want to follow suit…only, I think I can’t do that. Too much pressure and all (see above burrito reference). However, Zach and I always talk about how we need to be stronger, in better shape for ourselves and Alex. Not only for longevity of life and being able to take care of him in our later years, but also because he’s a handful now! In A Treasure Chest of Behavioral Strategies for Individuals with Autism, recommended by Bonnie Sayers, one of the first pages says, “Additionally, working on a daily basis with children with autism can be very physically demanding. Some parents lift weights and do other exercise programs to maintain their strength and endurance for responding to the physical challenges exhibited by some individuals with autism”.

So, we’re getting healthy. Not necessarily losing weight, but watching what we eat, not dieting. We’ll start working out together and apart, we’ll get healthier…and then I’ll be able to pick up that little bugger and carry him up a flight of stairs kicking and screaming and I won’t have to gingerly stretch my back out afterwards….

6. I’m changing my blog. I seem to like change. Okay, some change anyway. But, I’m changing it, so when it’s all done, I’ll let you all know and I hope that you’ll all like it lots and lots and lots.

7. I want to increase my readership. This is for a variety of reasons, but mainly because I want to be able to reach that other mother, woman, parent that struggles in life about life. I don’t want anyone to feel alone. I don’t want anyone to feel like they’re a failure (something I feel like weekly)…at least not alone. I want to make someone laugh at the quirky little things that we all do (at least I hope I’m not the only one), say and think. Mostly, I want to know that someone is listening to me ramble because Zach seems to tune me out. (subtle hint: please forward my blog to all who you think would get something from it; stumble it; tweet it; thank you!!!).

8. Lastly, I don’t want my posts to be this long…ever. My pinky on my left hand is starting to lose feeling in it. Same with the ring finger tip on my right hand. The bags under my eyes are getting super thick and puffy and about now I think it’s a good thing Zach is sleeping and can’t see me like this.

What about you? Are you doing a 2009 Resolution or two, or 8? What is it and do you have a plan? I would love to know what you think about my “Objectives”.

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Clarity

Photo By: Mikey

Zach and I were in the mountains. We were away from all of our children for the first time in a long time. We took time for us. Time to bond; time to breathe and relax. We had just enough space to get back to being ourselves. We had time to think; time for clarity…

“So…what do you think of these?” I said trying on a pair of corduroy jeans.

(silence) He looked uncommitted to an answer. So I did the swirl-turn, arms out and all (like Wonder Woman, my childhood hero).

“Well?”

(grimacing). “They make your butt look big”. I noted the lack of eye contact.

“Hmmm” I said, twisting my waist and neck, trying to see my rear straight on in the mirror behind me. I started wondering why we’ve been so tortured as a species to not have 360 degree turning heads for occasions such as these.

“Yea. You’re right.” The jeans came off, we moved on.

Then, Clarity.

Turning to Zach with a giggle in my words, “I was thinking. Those corduroy’s didn’t make my butt look big….my butt IS big”.

His puzzlement turned to laughter.

Clarity.

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What NOT to Wear to a Cookie Exchange

Photo By: Nicholasjon

I excitedly told my daughter that we were going to make cookies over the holidays. 6 dozen cookies.

I don’t cook much. I will bake before cook – most of the ingredients come in the box and really there’s only a little variation depending upon what kind of cookie you’re after. Still, I was cooking - rather baking- 6 dozen cookies for my first ever Cookie Exchange.

I should have known that I was way out of my league when my daughter excitedly ran over to the microwave pointing and saying, “make cookie”. Does anyone see anything wrong with this? The microwave? I feel sorry for her future husband!

Harried from the day, I arrived at my Cookie Exchange at a new friend’s home, in the same clothes I was wearing that day. It was a cookie exchange, right? Nothing ‘fancy’, nothing more than casual and laid back? I should be just fine in my fashionable two-toned shirt combo, jeans and black boots…right?

Ha. No.

I was greeted at the door by K. who was not in my kind of attire. Okay, that’s okay…I’m still good. I placed my plastic red-swirl bowl of Oatmeal Scotchies on a table set for an ‘evening’ and took note of the porcelain place “cards” with gold writing, and found the one that labeled my contribution. It wasn’t looking good.

I walked into the kitchen and saw that our gracious hostess, gracious Cookie Exchange hostess, was dressed very nicely with a caterer-type display of foods for us to nibble on; no crackers strewn lazily across a random plate here. In my mind, my jaw dropped and I reversed my day to see when it was that I made the determination that my casual, harried-mom-of-three-who-barely-made-it-here-without-leaving-my-husband-to-go-insane-by-himself attire would do. I’ll have to correct that moment in the future.

But there I stood in the kitchen where the display of food (just the display) made my eyes open wide trying to soak in all that I could possibly learn about hostessing and all that was missing from my kitchen “wardrobe”. I still stood there while other guests arrived – dressed for a not-so-casual, but not entirely ‘fanciful’ Cookie Exchange. Yep, I was out of my league.

Then I opened my mouth. (sigh).

It was fine at first, really, small talk is easy enough, right? I talked mostly with K. for a bit. After what seemed like a “feeling out” by K., I realized that we had something in common. Her son (who may receive a diagnosis in the future, though what I won’t say in case she reads this, and plus, I’m no doctor) and Alex do many of the same things. She handles them well, scheduling seems to be an easy task for her and she sounds as though she’s been vigilant in noticing triggers and adjusting accordingly. So, needless to say, I felt comfortable. Not kinship, a long lost sister, I’ve been missing my best friend whom I finally found, kind of comfortable, just comfortable.

Then I started spewing TMI. SPEWING! I told poor K. more about my gynecological, pregnancy “problems” than I’ve ever typed here. I just rambled on without a care, really without perceived feeling in what I was saying, and I just kept going. Even though in my mind there was a little person who suddenly sat forward in their cushy, comfy chair yelling, “STOP. What are you doing?!?!. Stop right there. There. Stop. Just shut your mouth, throw a cracker or whatever that is over there in it and shut up! Drink! Take a drink, just STOP!”

(Sigh).

At the end of the night, I made note of a few things:

1) I think I’ve lost all my social skills
2) I don’t know if I’ll be invited back to next years exchange
3) If I am invited back, I’m winning the “Best Display” award that was given out
4) My little voice should never, ever, sit in a cushy, comfy chair
5) I’m regressing back to high school and asking my girlfriends what they’re wearing!

Have you ever done a Cookie Exchange? Did it go better than this? How are your social skills? If you stay at home, do you feel like your “social ability” has decreased any?

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Merry Christmas

Merry Christmas Everyone!

With the craziness of the season, the quirks of the family, the fights of siblings, whines of babies and constant juggling of food, sleep, sharing of toys and more, the warmth of the season always shines through.

Enjoy your day. Enjoy your family, your friends.

Get off the internet!

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Last Minute Gift? Stride Rite Early Walkers...

I’ve gone through some baby shoes in my time. I’ve gone through toddler shoes. I prefer not to spend much. Kids’ feet grow – fast. But I also like a good value for my money and I want my kids’ feet to develop properly. I don’t fall in love with baby shoes easily…I think they’re cute, but I can also pick them apart when it comes to quality.

I can not however find anything that I don’t like about these Stride Rite Early Walkers with Natural Motion System. Stride Rite promotes themselves as the “Official Shoe of Growing Feet” as “every stride rite shoe is built to encourage the natural, healthy development of growing feet; from prewalkers through toddlers, stride rite technology will give growing feet the support they need for proper foot development.”

The pair that I just got for Ben is pictured here. They’re leather and have two thick Velcro fasteners. Unlike other double-Velcro, they’re thick and in the right places: one on the top of the foot and one on the side. It keeps the tongue of the shoe in place and the shoe snuggly on his foot. I don’t have to worry about these popping off accidentally at all.

The leather outside is very sturdy but not hard on his foot, and the inside is of a soft leather as well. The bottom is cushioned for flexibility, but again, sturdy. How do they do that? The whole of the shoe seems to be designed for the heal-toe action promoting good walking and foot development. The sole is completely slip-free and doesn’t leave skid marks from the bottom or toe portions.

As soon as I put these on Ben, he was off trying to get his walk on…he loves them as much as I do.

So, if you have last minute shopping to do for an early walker (boy or girl), or a little guy who’s getting ready to walk, and you want good value, foot development, and a shoe you couldn’t complain about, these would be for you.

Have you had experiences with shoes that you love? Which ones are they?

*This was posted as a completely unbiased review of and for Stride Rite shoes.

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Rediscovered Partnership

My shoulders are officially a millimeter or two farther from my ears.

That is to say that the stress of every day life that I hold in my shoulders, slowly inching them above their assigned space, received 27 hours of stress-free, child-free, bonding time with my husband and I relaxed just a little.

We held hands again, laughed, joked without any sarcastic digs, we meshed as we used to, we jelled without insoles, we just truly enjoyed each other. I missed him, he missed me. We found each other again.

Zach and I returned from Silverthorne where we finished our shopping with some of the BEST deals ever! (Seriously, we got our kids and ourselves bags full of clothes from Old Navy where each piece was $5 or less…one shirt was even $1 – now that’s the way to shop). We ate some amazing Mexican food for dinner (Carols Miguel’s in Frisco), played at Old Chicago’s (I really shouldn’t play electronic golf, or even real golf), then topped it off with a delicious breakfast from a little place called the Sunshine Café.

It snowed the whole time we were there. We loved it. It was perfect.

Carol from A Different Nest commented on how if she and her husband don’t get away every few months, they get cranky. Zach and I haven’t gotten away since we were married 5 years ago, except for a single overnight when we had only 1 child for a friend’s wedding. One of the most interesting things I found was that all the slightly negative, slightly sarcastic comments we might feed each other during a regular day disappeared. There was no score keeping on who is doing more, who has the ‘harder job’, who is more tired, got up with whichever child the most…there was none of that.

We were back to being partners.

As much as I am loving these feelings and want to bask in the glow of our rediscovery of each other, two big questions come from this: 1) How long with this last? 2) How long will it be until we can do this again?!?!?!

Is anyone up for a bet? When was the last time you and yours got away with each other? Did you find that perspectives changed and you re-kindled that little something? How long did it take for things to go back to their ‘old ways’?

Photo By: Lumaxart

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Go Away ~ Guest Post by Ellen at Love That Max

Happy Monday everyone! I'm away on our first overnight in years celebrating our 5 year anniversary (actually on New Years Eve). We have a wonderful sitter (Alex's previous preschool teacher), my mom is on standby and Ellen of Love That Max is doing a guest post...it would seem all my bases are covered.

Ellen is an online friend that I've been lucky enough to have met. Her son Max is very similar to my son Alex. Alex had a stroke while I was pregnant with him; Max suffered a stroke shortly after he was born. This wonderful mother has a great, light perspective on our lives as parents of special needs children. She has been gracious enough to give you a post while I'm away celebrating my 5 year anniversary with my husband. When you're done reading her guest post, please leave her a comment and then check out her blog, Love That Max.

Photo By: Love That Max

Hi, all. Here's hoping that Mia's having a fab time as you read this. When you name your blog "General Hysteria," it is a good sign that you could use some relaxation. He, he. Happy fifth anniversary!

I know a lot of parents who never go away as a couple. I understand that impulse, but at the same time, I think it's important, especially when you have a kid with special needs. When our son, Max, was a year-and-a-half old, my husband and I went to Belize for a week (see photo above—yeah, wish I were there, too). We'd been through absolute hell when Max was born, he had a stroke at birth. Dave and I needed intense emotional healing, which we couldn't get because we were so busy fawning and fretting over him. We were so lucky my mother and sister could babysit. Since then, we've done several local weekends away. Every time, we come back rejuvenated. I don't feel the least bit guilty. We deserve a break, we've been through a lot.

We make a point to go out at least once once a week, even if it's just for coffee. How often do you do something couple-y? What's your favorite thing to do?

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A Letter From A Child With Autism

A few things to say about this post:

1) It's long, but please read it; copy and paste to for yourself if you wish
2) It's worth the read to understand any child that lies anywhere on the Autism Spectrum and many children that have any sort of developmental delay, brain insult (like Cerebral Palsy) or the mixture of any number of disabilities
3) It breaks my heart because I feel as though it's my son speaking to me
4) The author is unknown

All pictures are Alex

"Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism, or what some people refer to as a Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: Some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you--I am not. Rather, I am hearing everything and not knowing what is most important to respond to.


Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I can not sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and allowing is something that a lot of people with autism have trouble with. I am not being picky--I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.


Don't be disappointed If Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things--just please be patient with me, and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming'. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.


Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person--an interesting person. I will find my place at this Celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!

From,

Your Autie/Aspie/PDD kiddo"

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Real, Fake, Minora?

Photo By: AudreyJM529

We used to be real all the way.

Even though we would inevitably pull into the garage forgetting our tree was on top and pine cone needles flitting everywhere (3 years in a row); even though it would die before it's time and leave me with subconscious thoughts of house fires, we went real.

Then, one year, my husband went shopping after Christmas and found an unbelievable deal on a 'fake' tree, lights included (at Joann’s Fabrics – that’s a whole other post). He called me excitedly and now...we have a fake tree.

I have to say that I love the fake tree. No mess. I'm not always concerned that the tree is going to be the spark that burns the house down, it doesn't take forever to get up; no cutting, no trimming - did I mention no mess? The smell?!? Oh, yes, I miss the smell. But that can be manufactured, can't it?

What I don't like about the whole thing, is that the other day, amongst the craziness, I saw someone driving with a tree on their car and it struck me as odd. ODD? That's not odd. It's seasonal. It's warm, cozy, gives a reminder of the season while driving by. Maybe I should drive with my fake tree on top of my car for a bit.

Of course, then we'd inevitable forget it's there, drive into our garage with the tree on top, flitting fake pine needles everywhere.

With Christmas just about here, I wonder, what about you? Real? Fake? Minora?

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We Cried

Photo By: Pshab

We cried. Okay, I cried. We joked. We agreed. We mended…as we always do.

On the last post, all of your comments hit it right on. It’s the accumulation of everything that hits us. The never-ending changing of needs that come with every development; always major changes; always major needs. Nothing can be overlooked.

Truly, around every corner, there’s something else that we’re worried about, that we need to investigate, that we need to exclude as a potential aggravator in our son’s journey. Just reading Ellen’s post on Love That Max made me take note of something that’s been gnawing at me about some of Alex’s activities at night…the possibility that he could be having absent seizures. There’s a good chance he is, a good chance he’s not. It’s another reasonable avenue to investigate, something else to exclude. (Something to post about later).

It’s the tightness of our wallet that is unbalanced with the needs of our young family. It’s the hecticness of the holidays, which of course returns you to the tightness of the wallet. It’s the craziness of our lives, the constant running, appointments, paperwork and trying to balance everything that we each need as individuals, parents, family members, partners. It’s no adult time to decompress or to bond.

In short, it’s everything. It’s life.

We laid in relative darkness, on the living room floor, legs intertwined. Only the multicolored lights of our Christmas tree and other festive lights illuminated our playful banter as we mended ourselves. As individuals. As partners.

Thank you all for your comments. In the end, we’ll take time for us.

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Wordless Wednesday ~ The Most Beautiful Thing That Will Forever Change Your Life

Photo By: Lynn (Gracie's Mom)

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To Drown or Breathe

We met with a Behaviorist for Alex yesterday. This is our second Behaviorist with the first having flaked out on us, and honestly, $250 an hour was way beyond what our budget could endure. We have our fingers crossed that our second, this one, Miss ‘Lee ($50 an hour) will be just what we need.

The initial (free) consultation was in our home with all three kids awake. I could see Miss 'Lee out of the corner of my eye wondering when we'd be able to start as both Zach and I were managing things (though they were relatively under control). After a few seconds, I told her that we could begin at any time; that Zach and I were actually able to pay attention and answer our kid’s requests at the same time. It was a good meeting.

At the end, she was able to compliment us. Funny how it's hard to accept a compliment. She said that we seemed to have it together (she was impressed with a portable notebook-style photo schedule we have for Alex). She felt as though it may be a few things we could tweak, a few things to work on and we may be able to get a better handle on some of the impulsive, violent and then oppositely, the overly affectionate things Alex does (like kiss the bottoms of his friends’ shoes repeatedly). She felt as though she would be able to help us manage his delays and autistic features and in turn, it would help him feel ‘better’ in his own skin. We’re good with that!

Here’s the thing though. It’s tough. It’s hopeful; it’s promising. It’s encouraging and dreadful all at the same time. She made us feel as though we actually have more of a handle on things that we believed. She made us realize that we understand more of what Alex’s needs are than we recognized, that we’ve managed more for him than “many parents are able to at just 6 years old” (almost 6). It felt good…again, encouraging. BUT…it’s more.

It’s always more. We’re never done. Many days we feel like we’re drowning in appointments, meetings, therapists, homework, school functions, home functions, family outings, picture schedules, paperwork for additional Medicaid waivers, more paperwork for SWAAAC evals at school, IEP’s, doctor visits, neurologist visits, shopping for AFO shoes, everything – anything. We feel like we’re drowning. And now we’re in the middle of the holiday season and we’re even adding something else. More schedules cards, more reinforcements, more, more, more.

Don’t get me wrong. We will do it. We will do anything to help him. We will do everything to help him. It just gets tiring.

It gets overwhelming. Not to mention that each time we add something, it’s the mini grief cycle again. You know, the one I just told you about. We haven’t finished the cycle that started with the reports of his IQ, or the one that began with the realization that he was starting to oscillate between becoming impulsively violent and impulsively affectionate, and now we’re adding something else. Something positive, yes; something helpful, yes; it’s just that it’s something more.

And, that takes its toll. It takes its toll on us as individuals, as married people, as parents. We take it out on each other. We usually don’t. Usually we’re very good with each other; Comrades of Battle and all. But sometimes it just gets to be too much. We haven’t had a second to breathe, a second to digest, just a second.

We’re supposed to go away together for one night next week to celebrate our 5 year anniversary. Yes, do the math. Alex will be 6, we’ve been married for 5 years on this New Year’s Eve. Alex was our Best Man. So, we’re supposed to go away, for the first time in some time. We have a wonderful sitter, Alex’s previous preschool teacher. My mom is on stand-by to help if needed. We can go away and breathe.

The thing is, we’re starting to question how much breathing we need to do. Do we go away together and bond, or do we go away separately and breathe? We both understand the importance of both. In the end, I’m sure we’ll go together, it is our anniversary after all…but when we come back, how will we feel?

Will we feel as though we got a break, that we gained perspective, a renewed sense of purpose of comradery, of love and thankfulness of what we have and what we’ve endured together? Or, will we come back and feel as though we never left?

What would you do?

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The Acceptance of Grief ~ The Long Version

Photo By: Honikum

(Please check out my post on Blogher)

I wrote a shorter version of this for a forum, but wanted to add the lengthier version here as it seemed an appropriate time and place, and since I’m starting a mini-cycle again.

The Acceptance of Grief:

Denial. Anger. Bargaining. Depression. Acceptance. As a former Victim Advocate, I knew this cycle well, but I only thought of it as it links to death. In death, there’s time. Time doesn’t heal the loss or take it away, but it does give the opportunity to ease the pain. Time puts a space from the loss, life continues, we manage to adjust our lives without that loved one. We eventually remember them with fondness rather than being overwhelmed with sadness.

So what happens when you can’t “get away” from it, when there’s no space from the loss? What happens when the loved one you’ve lost is still sitting right in front of you, living and breathing? Where does that cycle end for me? More importantly…does it end for me?

When our son was diagnosed with cerebral palsy at 9 months old, our whole world came crashing down. We began mourning. We mourned the loss of the life we thought we’d have with and for our family; most importantly, we mourned the loss of all of his possibilities for a “normal” life. We mourned his loss at ever being a pilot, police officer; we mourned his loss of having the world wide open for him. It was a death of dreams. I began the cycle.

I never realized - I never imagined that I would bumble around this cycle for 5 years before I finally hit my major acceptance; major because there are times that I continue to go through mini-grief cycles. I have come to learn that I, as all parents of special needs children, have a different kind of cycle. Grief comes around to hit me every now and again. When I let my guard down, when I go on with life, when I think I’m at my strongest and that we have our son all figured out. It hits me like a sudden breeze. It will knock me off my feet, taking the breath from my lungs, the tears wrenched from my heart. In the Summer 2008 issue of “The Journey”, by Parent to Parent of Colorado Stacey Linn writes about how this happened to her.

“So I thought it was over. But I guess not. It’s funny how time passes and you think you are ‘okay’…Today I was broadsided by an unbearable wave of grief for my seven-year old son as he watched his friends choose teams for a relay race at his best friend’s birthday party. Before I knew it, I was crying”.

This is me, this is us all. It has hit me when I watch him play, in school meetings, when talking to a friends about having a girls night out, but especially when I’m given additional “bad news” about our son. Each time he has a seizure (the first one 6 days before our daughter was born), each time there’s a new diagnosis (Cerebral Palsy, Epileptic, ADHD, Sensory Integration Dysfunction, Developmentally Disabled, ASD Features) or a new medical procedure (Botox injections in his leg, casting, AFO-Orthotics). It can hit me the moment I think I’m done…but I’m never done.

So, I’ve come to another kind of acceptance. I accept that among all the tired days and nights of the endlessness of the hyper vigilance of his care, I know that I will grieve. I know it will come. I know it won’t stop. I have found ways to get by in giving myself the opportunity to do it, by giving myself permission. I have come to accept that I will never truly finish grieving. But I couldn’t be happier to have my special boy.

Getting to this function place in this unforeseen life wasn’t easy. The truth is that it took me 5 years to find my way to acceptance; that I bounced around like the pin-ball wizard, stuck in the cycle of denial, anger, bargaining, depression and back to denial again. I wasn’t immediately ready to have someone shove down my throat a reality that I will live with for the rest of my life.

In finding myself grieving, and knowing the differences in how I needed to go through it, there were a few things I found helpful. If you are grieving, or know someone who is, this may be helpful for you as well:

1. First and foremost, you need to have a support system of some kind. Talk with your spouse, your parents, a friend, a neighbor. Talk to anyone who will be in your lives for a lengthy period of time that can experience things with you. Keep them up-to-date on what’s going on medically, and physically and emotionally for you.

2. Do your research and educate yourself. I couldn’t sit and read a book. For me, there just wasn’t the time and my attention wouldn’t be held in a lengthy book. I’m a skimmer, so the internet is a great resource for me.

3. Visit forums. Forums like Mom Like Me, Mile High Mama’s: Special Needs Forum or Cafe Mom can be of immense help. There are also online groups at Google Groups or Yahoo! Groups. You can get advice and guidance from other parents who are going through the same turmoil as you; you can give ideas from what you’ve learned in your journey; and you can lose the sense of being alone on an island.

4. Find informative websites. 5 Minutes for Special Needs, Parent to Parent USA, PACER are just a few.

5. Find blogs by parents of special needs children (search for special needs + blogs). Read them. See that you’re not the only person and that it’s okay to have the mixed feelings that you have. (Also, see my blogroll on the sidebar)

6. Start your own blog or journal. Blogger provides a very quick and easy interface to start your own online blog. You can mark it as private so no one else can read your thoughts and feelings or you can make it public to share with other parents. You can also write under a pseudo name if you’re concerned about your thoughts being identified with you. Grab a notebook and write your thoughts down. Not everything has to be done online. Sometimes seeing your own thoughts written in your writing can be cathartic. Put it in a safe place where only you can review what you’ve written and reflect later on how far you’ve come.

7. When you’re ready, you can join various organizations that have group settings for support with other parents of special needs children and professionals. You can easily find one in your area by talking with a caseworker, school official, a therapist. Many people prefer to join support groups that are made up of parents with children with the same diagnosis. Still others prefer general groups of parents of special needs children since there are cross-diagnosed children and insights to be gained from those parents.

8. Become an advocate for your child by doing these things. No one will know your child better than you, and quite frankly, no one else is going to do it. YOU need to be the one to help your child be the best the (s)he can be.

9. Give yourself a break! Trust me, I know it’s easier said than done. It took my husband and me about 4+ years to get to a place where we had to do this for ourselves, without guilt. I’m sure our son was ready to see other people besides us and really, we needed it. I’m surprised we hadn’t fallen apart in that time. Breaks could come in the form of you and your spouse taking turns leaving the house – leaving the house. You could entrust a family member familiar with what your child’s needs are. One of the best resources we found for our son and our children was our son’s preschool teacher. She offered, we love her, he loves her, we trust her and she knows him almost as well as we do since she had him for 2 ½ years. It works out great!

10. Accept what you’re going to go through. This is quite different that the acceptance in the Grief Cycle. I’m talking about knowing that you’re going to be a maze of emotions, and a knot of tangled thoughts; you will be weary for some time. You will have highs and lows; you will cry, laugh and throw things (if you need to). Give yourself and your spouse the latitude to be human, to know that this is one of the most difficult things in life that could be handed to you, to continue to grieve over what you have lost, over what your child has lost.

Finally, when you’re ready, continue through your cycle and get help if you need it. But always remember to find strength in the depth of your being, for we are special parents given special kids. We must always continue on and can never stop fighting for our children. We will never cease to grieve. We will never give up hope for a better life for our children, and we will never fail to see the light in our children’s eyes that will melt our hearts and souls.

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The Journey to Hysteria 4 ~ The Road Not Taken

Photo By: rniles

Always fresh in my memory is my 8^th grade English class. It was a class, a teacher, Mrs. Thomas, that could have changed the direction of my life if I were willing to see it; if I weren’t so caught up in being…in 8th grade. Two things I remember from that class.

The first was when we had to give a mini presentation / play about…oh, I have no idea what. During that play, I ad-libbed. I got a lot of laughs for my expressions, what I did that didn’t follow the skit, but still made the skit. In that moment, I was an actress.

Many times I think back to that, the feeling of the laughter received, the fun I had “performing”. I have looked back and wondered what could have been if I had paid attention to that feeling and maybe followed it. What if I told someone how I felt and they helped me make that path, whether it was successful or not. But alas, I did not. I am no performer; I am not an actress.

The second thing I remember, the second thing that I will always be grateful for is that I learned to love words. She gave a choice of one of two poems to memorize; I was only one of two people who memorized "The Road Not Taken "by Robert Frost. I can still recite it from memory. From her, I also learned that I love to write. She taught the rules of writing (much of which I’ve forgotten or twisted in some manner), she taught the play of words, the wonderful descriptions and expressions that could be had with just the right combination of words.

That was in 8^th grade, which for me, was over 23 years ago. I kept the love of writing. I kept the passion for words (albeit simple, small, easily spelled words thank you) for all this time. This blog, after encouragement from my mom, is the first opportunity I’ve had to put this passion for writing to the test, in text, for all to see. This has been my first opportunity to diverge down this road.

If I had paid more attention to the first road, if I had gone down that road – even not becoming any kind of performer, I likely would never have met my husband. I would have had a different set of circumstances, and likely not had the children I have. I would have different children or maybe none at all. Something I can not imagine. I would not have had the privilege of have a special needs son. I would not have had the privilege of having a precocious daughter or a curious little boy.

I would have had a different life altogether.

What about you. Do you remember a fork in your road?

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.

~ by Robert Frost

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Autism Twitter Day is Coming!

Most people know about Autism by now. But some may still have tons of questions about what it means for us, for our children, grandchildren. Though we know that Autism is widespread and growing in numbers of diagnosis every day, you may still feel alone, lost, confused.

Autism Twitter Day is a day for those involved in autism (caretakers, teachers, those diagnosed with ASD) to twitter questions, experiences, concerns to a panel via Twitter. So, for those of you not already tweeting…what is Twitter?

In short, Twitter is an online (or via text) social networking site. It’s like texting but in a much larger scale, with people you may not necessarily “know” in the beginning, but with whom you share a common interest. I have just started tweeting, but already, I am “following” 60 people and 70 are following me. No cults here – following means that I see their tweets (or texts / short messages if you will) and they see mine.

(To see what I've been tweeting, you can go to the General Hysteria blog and scroll in the sidebar to "Twitter Updates". Or you can follow my by going to my Twitter profile page and clicking follow.)

What do you tweet about? Really whatever you want. I tweet about random thoughts, what I’m doing through the day, links to my blog, links to other blogs or other articles I find of interest. Why? To reach out to others, share a commonality, build a community of support.

So, back to Autism Twitter Day. If you don’t already have a Twitter account, it’s so easy to sign up for. Here’s the link. You just make a sign in or handle name, enter a password, fill out some information if you’d like (blog, bio, etc) that others will see. That’s it. Then go to the blog, Autism Family Adventures, and sign up with your Twitter ID to participate that day and to see the directions for participation.

Next, wait for Tuesday, December 16^th and participate in Autism Twitter Day. Plus, there will be great giveaways donated a variety of people, including me. I have donated a book, Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals.

All of this comes from the organization and dedication of the Autism Twitter Day host, Bonnie Sayers. If you’d like, forward this post to others so they can participate with you. I look forward to seeing your tweets on Autism Twitter Day.


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Wordless Wednesday ~ First Snow

Photo By MiaHysteria

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Heeelllooooooo Kitty

Photo By: .Bullish

I was frustrated. I was going to have to start moving in a direction I truly didn’t want to. Why didn’t they have something different? Something not so…sigh. I don’t know. Not so wrong for different reasons. Shopping for a two year old’s birthday present isn’t as easy as it sounds.

She steals my camera. Whenever she gets the chance and I haven’t thoroughly thought out where I’m putting the camera for a moment’s rest, she steals it. So, I thought she should get one for her birthday. Only I didn’t want to spend quite so much money on a camera for a 2 year old. Anything that’s out there, as a toy and a camera is $50+. That’s insane. Not to mention completely beyond my budget.

Finally, perusing through the overly girly items, I found what I was looking for. For only $12.99. YES! Only, it was Barbie. I don’t have anything against Barbie really; I had tons of Barbies. I just am not into the polished “too-perfect-to-be-real-and-you-should-strive-to-look-like-me-which-is-impossible” thing; I’m not into sending that message to my daughter when she’s only 2. But, I found one with just flowers on it – Barbie flowers, and I was off for other accessories.

What I came to find was that my accessory choices were between Barbie, Brats (which I was initially for until I realized they’re pushing fashion, gossip and perfection in a different manner), and then Hanna Montana (again, nothing against her, I just couldn’t do it). I was frustrated.

Barbie it was. Along with Barbie walkie-talkies…not really the kind of gift package I wanted for her. Not really what I wanted her to get into now…not at 2. Settling into this idea, I rounded the corner to the next isle and held my breath. On the end cap were scattered Hello Kitty items. They wouldn’t possibly have Hello Kitty…cameras? Would they?

I loved Hello Kitty as a child. My cousin and I both collected Hello Kitty things. It’s girly, hip to a certain age and more along the lines of what I was comfortable getting my 2 year old into. I looked a little further. I sucked in more air. Held my breath a little tighter…and…

I’m proud to say that I have started my daughter on Hello Kitty. Yes, she’s young. She won’t appreciate it yet. BUT, by the time she starts getting into themes, really getting into them, she’ll look around at the collection I’m building for her and see girly fun things that aren’t sexist, bratty or an idolization.

She’ll have time for all that later.

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She's 2!

She’s 2.

Yesterday the Light of Our Lives, the Sunshine in Our Hearts turned 2. Going on 10, but she turned 2.

I know a lot of blogger say a lot of endearing things about their children on their birthdays, and I want to say the same, but I also want you to know her. Actually know her. What she’s into, what she does that’s funny and makes her…Violet.

She can do buttons, put on her shoes, socks and pants. She is trying so hard to get the shirt and jacket on her own. She loves to brush her teeth on her own, have her hair done, lotion herself and would prefer a shower. She counts to 3. She’s always kind, thoughtful, the caretaker of everyone, but especially Alex. She takes his uncontrollable thrashes the best that a 2 year old can. She seems in her way to try to understand that he is “different” than her. She just seems…older.

Every time she runs, it’s as if her speed blows her away. She runs with her arms stretched out behind her, blowing in the wind; head bouncing like a little bobble head doll. She’s usually running to tell someone that she went “pee-pee in the potty”. Yes, that’s the older than her age part. She went ahead and started potty training herself at 22 ½ months. She’s potty trained now; something she prefers to do without you in the room, and with the door shut. #1 and #2. Not that you want to know, but you need to know. She’s exceptional.

She’s a bean pole. She’s finally 27 pounds and the height of a 4 year old. She almost always has food in her hands but detests formal meals. She plays musical chairs or finds herself picking up whatever Ben flings on the floor. She doesn’t hesitate to snuggle on you, pick off your plate, ensure that she has one of everything that everyone else has; then asks for more even though she’ll never eat it. She’ll politely sit on your lap for a more comfortable eating environment. Inevitably, at the end of a meal, she has stripped and is content. She is an actress, a flirt, an instigator of trouble. She absolutely loves her pursues, her cell phones, necklaces, bracelets, sunglasses, and markers. She is beautiful.

It’s not unusual to find her concerned to be sure that her baby dolls have their bottles, even when going to bed with her at night; her babies must have their needs met after all. You can often find her cradling her baby doll in her arm, bottle feeding with a sway and a hum. She loves her brothers; absolutely adoring Alex, his company, his antics, him.

She’s addicted to sweets. It’s not a pretty sight. Sweets are a drug to her and one of only 2 things that turn her into a little devil. The other is sleep deprivation. (Who wouldn’t turn!) She loves her sleep, just like her mom. She needs her baby towels, at least 2, and a bottle of water with her in order to send her into a blissful slumber…of course, you have to hope that she doesn’t strip yet again and throw her diaper out of bed (she only wears one at sleep time).

I’ve sung Santa Claus is Coming to Town 15 or so times in the past 2 months, getting the kids well-prepared for Christmas. She now sings it, to the best of her ability. She loves to sing. She loves music. All music. She dances in the most beautiful toddler way she can.

It’s ironic. The moment she was born I felt as though she added light to my heart. I felt that she put sunshine in my life. I hadn’t told anyone this until long after my mom began singing Violet “her song” (each child having their own). The song is Violet's favorite. You will often hear her asking to have her back tickled while you sing this part of this song to her, You Are My Sunshine:

You are my Sunshine,
My only Sunshine.

You make me happy,
When skies are grey.

You’ll never know dear,
How much I love you.

Please don’t take my Sunshine away.

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Saturday Sick

Photo By: L.e.e.

It’s cold. It shouldn’t be this cold without snow. It’s not snowing.

My chest aches with the cold that’s settled there. My throat is scratchy…I never get “throat things”.

My kid’s coughs are painful to them and to my heart. They’re chunky and horse at the same time. Their noses are running. I’m glad their fevers are gone.

We have no plan today. I’m sure this will drive Alex crazy. BUT, we need to get well.

Still today, I’m happy. I’m light. Nothing can faze me (knocking on wood, throwing salt behind my back). It is Saturday after all!

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Parent's Prayer

Photo By: Houstonian

Now I lay me down to sleep,
I pray my sanity to keep.
For if some peace I do not find,I'm pretty sure I'll lose my mind.

I pray I find a little quiet,
Far from the daily family riot.
May I lie back and not have to think
About what they're stuffing down the sink,

Or who they're with, or where they're at
And what they're doing to the cat.
I pray for time all to myself
(did something just fall off a shelf?)

To cuddle in my nice, soft bed
(Oh no, another goldfish--dead!)
Some silent moments for goodness sake
(Did I just hear a window break?)

And that I need not cook or clean
(well heck, I've got the right to dream)
Yes now I lay me down to sleep,
I pray my wits about me keep,
But as I look around I know,
I must have lost them long ago!

Author Unknown

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The Reality of Motherhood-GUEST POST

I am so excited to be participating in the first TwitterMoms "Blog Swap"!

This guest post is brought to you by:

Andrea M from Hip Moms Who Work

www.HipMomsWhoWork.com

Don't forget to check out my post on her site.

I know this is my reality, is it yours?

Enjoy!
___________________________________________________

Before I was ever pregnant, I thought about the kind of Mom I would be and the kind of children I would have. Birds would be singing, the sun would be shining, I would be lovely and clean and wearing clothes without food gunk stuck to them. Everything would be beautiful and perfect and clean and everyone would be well-behaved and well-groomed and (insert sound of record player needle scratching across an LP here)…then I got pregnant. As I look back I can see how my ideals were shattered early on and should have been a huge wake-up call for me to readjust my thinking. But, no, that’s just not how I work. Below is a quick rundown of how my motherhood dreams compare to the reality. Stop me if you experienced any of these too…

I will only gain 20-25 pounds with my pregnancy and look adorable – Yeah, well, I gained 25 pounds…times 2 and some change. I packed on a hefty 53lbs. with my first pregnancy, increasing my mass by 50%. No, I did not have gestational diabetes, I had the hall pass to eat whatever I wanted. Unless you consider Orca adorable, I looked like hell – bloated, blotchy and big as a pig.

I will go into labor at home and will take a walk on the beach with my husband to get the contractions going, just like in the pictures they showed us in birthing class. I will have a natural childbirth and I will follow the 7-page birth plan I spent hours writing. – WRONG! I was overdue and not dilated at all. They did an ultrasound and because Justin had a massive noggin, the doctor estimated the baby’s weight to be 10lbs. “We should induce you because if this baby gets any bigger, you’ll end up with a c-section,” said my OB. So, I was induced and demanded the epidural at 3 centimeters because I couldn’t handle the pain (so much for my birth plan and natural childbirth!). I labored all day and into the night and then after pushing for two hours ended up having a c-section after all. All because of baby Justin’s big cranium.

I won’t be one of those disheveled Moms who look like zombies. I will shower and comb my hair. – I have become this person and have been this way for 7.5 years. Help!

I will have it all – the perfect kids, the great job, the wonderful marriage. - Um, it didn’t quite turn out like I expected, but I did get a nice prescription for WellbutrinXL (aka, ‘happiness in a pill’).

My children will only eat healthy food. You are what you eat, after all. – If that last statement is true than I should rename my kids Pizza, Chicken Nugget, and Hot Dog. But, come to think of it, that sounds a lot cuter than Tofu, Alfalfa Sprout and All-Natural Peanut Butter.

I will never use the TV as a babysitter – I can sing every lyric to every Wiggles song ever written. “Toot, toot, chugga, chugga, Big Red Car” - c’mon sing it with me - “You travel near and you travel faaaar.”

Oh, I could really go on and on. I may need to post a sequel to this topic someday.

How about you? How has the reality of Motherhood differed from the ideals you had before having children?

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Wearily Aware

Photo By: Phil Dragash

Looking at myself, I truly am in awe of my calmness. After being slapped around by my almost 6 year old boy (slapped around is a slight exaggeration), I would think I would feel enraged. But I’m not.

I’m solemn. I’m pensive. I’m….going to go through the cycle, again…and I know it.

The cycle of grief is something that every parent of a special needs child goes through, forever. We don’t get the break of finality. We don’t get to hit acceptance and move on with things never changing, with things remaining the same and learning to cope. There’s always a change, always something more, new, different. Always more bad news, hardly ever good news. Our children are always changing and developing, but not always making strides and not always moving in a good direction. With each of these metamorphoses, we go through the cycle again.

That’s what I’m doing now, at least that’s what I think. That’s what my mind is preparing for, what my body feels; that’s why I feel listless, zombie like in knowing that this is something that I just have to deal with, that will never go away, but with some help can be managed. Not controlled, not ended, not fixed or cured, managed.

I feel the tears swelling in the back of my eyes. I don’t know if they’ll come.

I think this is the 3rd time this year alone that we’ve had big, life altering, state-of-life confirming, negative thing to deal with for Alex alone.

For this one, we are interviewing Behavioral Therapists. Money is a factor, is always a factor. We can’t afford anything, but we need to do something. We need a behaviorist that understands the complexities of a multi-diagnosed child. We need a behaviorist to tell us what we really need to do with transitions, his daily schedule, with his rage, his tantrums, hitting his siblings, hitting us, biting himself, acting like he’s going to bite others, on and on. And, believe it or not, his over-kissing. Yes, over-kissing; he can be overly affectionate in a manner that will be deemed inappropriate when he gets older. It would seem we have a huge pendulum swing of emotional outlets, and we don’t know what to do with either.

So, I’m solemn, I’m pensive, I’m wearily aware that this won’t be the end of what is to come for Alex, for our family. I just hope somewhere, we can have some light for his life. Until then, I’ll start the cycle…again.

This was published today since tomorrow I will be having a Guest Post for a Blog Swap. Check back tomorrow, it should be fun!

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He Slapped Me

Photo By: J.Belluch

He slapped me.

It’s not like it hasn’t happened before. But it was so long ago, years in fact. I must have wigged out on him because he abruptly stopped doing it and never hit us again…until recently. It seems Alex is starting to go into rages, maybe mini rages since I can’t account for any bruising from him yet. But they’re starting none-the-less. And what brings them on? Transitions. Any transition. Transitions have always been difficult, but they have moved to a higher degree of difficulty now.

He’s on break from school (I despise school breaks). I knew he would be going out of his mind with the need for sensory balance. Since we don’t have any swings as of yet, I decided that regardless of the temperature, regardless of Ben’s need for a nap, everyone was getting bundled up and going outside for a walk. Big motor movements are good for Alex’s sensory diet (along with swings and gum). A neighbor friend that he’s been asking for came with us. It was nice weather; we went on our usual route stopping to watch the river of cars pass by our watching perch. We continued on home to play outside and bask in the warmth of the sunlight… all was well. Then another transition.

His friend needed to go home for lunch and rest; we needed to do the same. Regardless of the warning, the countdown, all efforts for a smooth transition, this ended with 30 minutes of wailing at the top of his lungs, eyes swollen, fists banging on my car, fingers pulling at the antenna on my car in the garage. He refused to come in. He refused to stop crying, banging, fitting. I usually give him sufficient time to go through his tantrum, calm down and rejoin us, but this time, 30 minutes was getting long and disruptive to everyone else in the house who were trying to peacefully eat their lunch. I gently forced him in.

After a minute’s breath, he began again by throwing his head and himself back and wailing at the top of his lungs. He was given choices, eat lunch or go upstairs for a break in his room. Eyes swollen red with streams of tears coming down, he looked at me and said, “Ding”, hitting me. Yes, we even get sound effects with it. He did this over and over almost with pleading in his eyes to just get it over with and take him to his room. Though this is probably what he wants, he never does it willingly. I have to mentally warn my back that we’re getting ready to pick up 50+ pounds of floundering, flailing little boy, big boy and carry him up the stairs – and I did.

Half way up, he slapped me. In the face. Stinging my cheek with his “good” hand. He looked surprised but not at all sorry. Maybe a little. Maybe some of both.

So, time passed, lunch was eaten, even by him. He calmed down after tearing apart his room and considering kicking me while I took off his braces. He is now sleeping.

I’m unnervingly calm.

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Where Was The Tom-Tom?

Photo By: Olemiswebs

I think I know what it is. The reason why I’m beating myself up so much. The reason why sometimes I feel too tired to parent, too tired to demand the correction of whatever my kids might get into this minute or that. The reason why I feel like I can never do enough, never do it all right, really have no clue what I’m doing and I can only desperately try not to ruin them.

I didn’t get the manual.

Map Quest was down; Tom-Tom wasn’t invented yet, directory service had no idea where to send my call. The dictionary doesn’t have enough space and the internet is too cluttered with people like me who are staring into space, head in hands, frantically searching for answers on how they got themselves here to begin with, and wondering what the heck they’re supposed to do now. Maybe write a manual?

Then I was special enough to have a special little boy choose me.

Well, now THAT, there’s definitely no manual for. I have to tell you, if you’ll allow me to digress for a moment, that all of your jaws would drop if I recorded our house for a day. After waking every morning at 1 am since our son doesn’t sleep through the night – ever – in almost 6 years – ever sleep through the night, we get the excitement of the day. The number of times we say:

“stop”, “don’t hit her”, “keep your hands to yourself”, “not the face”, “it’s okay”, “we’re going to, in a minute”, “why did you bite your arm”, “what’s wrong”, “she’s not doing anything wrong”, “don’t worry about it”, “don’t bite him/her”

…or whatever else we can come up with for reassurance, direction or to get the point across to cease and desist the action that is a safety concern for others, is astounding. The number of complete meltdowns because of eating, dressing, putting on the backpack, going in the car, not going in the car, brushing teeth, washing hands, Pink Panther isn’t on today, anything, is maddening. By the end of the day, we are so tired we could sleep for weeks. It’s like typical parenting under the influence of a case of Red Bull and we’re so constantly hyper vigilant that we can never really relax…ever…ever.

(Sigh). Thank you for that moment.

But again, we all do this don’t we. Beat ourselves up to meet up to our imaginary expectation of what we should do to reach that throne. I think it’s just that when you’re parenting a special needs child, everything – everything is magnified. It’s not something I can every really explain in words, although one day I hope to do this. Maybe it will make sense this way:

A friend of mine, who is a special needs mom, told me that she was watching a special that had scientific proof that for every year that you parent a special needs child, it takes 6 years off of your life. For every 1 year, 6 years are taken from the end of your life. So, I’m tired, I beat myself up. My kids really aren’t that bad. They have great hearts, they’re mostly kind, considerate, usually listening (unless their sleep deprived) and most importantly I love them. I don’t think I’ll completely ruin their childhoods, their memories or their lives, and those days that I feel down about where my manual is for all this, I’ll remember what my mom told me:

“As far as I am concerned…you are ‘riding high’ as a mom. I don’t know anyone who has worked as hard as you to do so much for their kids. Mom”

Thanks Mom.

(I’m still looking for my manual. Does anyone else have one?)

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