A Gentle Beginning

by Lanie, September Road

 

Asking me how I came to this particular website, is useless. I can’t remember. I can barely remember to brush my own teeth. But, ask me the stats on the rate of autism and I can spout them out as if I was the original researcher. Ask me how to spell “Orton-Gillingham” and I can do it in my sleep. Ask me a thousand things having to do with my children or husband and I can have perfect recall instantly.

Ask me anything about myself…..crickets……silence……sigh.

I have let myself go, I have sunk into a depression and, and, and…..I just don’t know.

I do know one thing. I am ready. I am ready to reclaim me. Starting now, today, this blasted hot summer. I may be slow, sloppy and unorganized but I am going to start. I am ready to put the Oxygen Mask on myself first. (wow, I didn’t get struck down by lightening…whew…wasn’t really sure when I was typing that sentence).

Again, I don’t know how I came to their website. I can’t remember. I just know that it has lived at the top of my favorites bar ever since I did discover it. I have enjoyed reading the other women’s accounts. I see myself in almost every single one. I see parts of me, parts of my marriage, parts of my kiddos, parts of relationships past and present. I like that. It’s comforting. To be a voyeur to someone else’s reawakening and empowerment. It’s nice to know that they are there, just a click away, doing their own lives and trying their hardest with struggles similar to mine.

But its not enough anymore. The satisfaction from watching others begin and succeeding at their attempts to reclaim their individual selves, has waned. There is nowhere else to go. There is nothing left, no excuses, no time, no waiting, no hesitating, no fear. G-d isn’t that a laugh….no fear left. I can’t possibly be afraid of any attempt because there is nowhere else to go. There is no more bottom. I am there.

All that’s left is to go up. To begin. Again. To put the oxygen mask on myself…..finally…….and breathe. Gently.

I must go gently at first. I need to remember that, in this state, I am fragile. I need to try to take care of myself and go gently. Gently, slowly, but in motion. I have never consciously treated myself gently.

I must go back to those brave women who have already begun their journey’s. Back to their words, to remind myself to go gently. To begin. To breathe. For me this time. Just for me (it still doesn’t come naturally to me to type those words).

Perhaps in time.

For now, it’s enough to make the attempt. To begin.

Thank you for my beginning Oxygen Mask Project

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I am a stay at home mom of 2 special needs boys. A few of our challenges are autism, apraxia, visual/audio processing, ODD, OCD, ADHD, Dyslexia, dysgraphia, anxiety, you get the picture. My husband and I are dedicated to each other and our kiddos, but that doesn’t mean we don’t feel the pressures. Recently I have begun writing online at September Road as a way to communicate to a larger audience on the products, therapists and frustrations that surround us. The tag line for September Road is traveling the special needs road with our faith, family, & friends.

This post was originally published HERE and used with permission.

Checked Baggage

by SuperDebby, Everybody’s Boy

At some point in recent history I decided to take my life back.

I can’t pinpoint when it was.  It wasn’t some epiphanial moment that I will regale young whippersnappers with in my old age.  In fact, it wasn’t a moment at all.  It was the culmination of thousands of moments, and born out of an innate desire for self-preservation.  What’s more is that I’m not “all better.”   I just am.

You have to understand that for some time now I have teetered on the precipice of  shear disaster.

It doesn’t do anyone any good for me to recount publicly the transgressions I’ve encountered in my 34 years.  I imagine I have lived a lot more than some, yet a lot less than others.  What’s important is my reality and how I’ve coped.  Which, depending on where you would rate such encountered transgressions on the “horrible, terrible” scale, is either amazingly horrible or absolutely terrible.   I’d like to believe that experience brought me growth for the most part, with a side of baggage.

Baggage like an eating disorder, an anxiety disorder, post traumatic stress disorder…and possibly some other “disorders” remaining to be unearthed.

Experience also brought me to understand my fragility, and appreciate my strengths.

It’s true that I jump every time I hear an unexpected loud noise.  Or that after 8 years my husband cannot approach me from behind without warning (and even then I still scream bloody murder at least 70 percent of the time).   Yes, I have foods that are “safe” and foods that are “forbidden”, even though the scale said I passed “recovery” about 60 pounds ago.  I chronically apologize for my very existence, always assume that I am wrong in any situation, and have spent much of my life harming myself physically and emotionally.  My anxiety keeps me awake a night, worrying about how I might have failed any number of people, and what egregious acts I might commit in the future.  I need medication to function in this world. Sometimes I cannot find the emotional energy to keep a dinner date with an old friend or put away the laundry that my husband washed and folded and instead find myself taking long afternoon naps seeking respite in a few hours without worry.  Even then, the memories, the anxiety, the fear sneak into my dreams forcing me to reconcile whatever it might be that I’ve fought so hard to cleanly compartmentalize.

It is incredibly lonely and miserable when your mind and body revolt against you.  Especially when you can’t reconcile a purpose.  I believe, at least in part, that I must experience these things because otherwise how could I possibly understand and champion my son?

No one is without gifts, however.  In fact, our weaknesses are often the very same things that help us towards greatness.

This is the realization that I had, when I decided to take my life back.

Without those encountered transgressions I doubt I would hold this passion to save my little piece of the world.

I don’t think I’d have the empathy to embrace another’s story without judgement, the patience to raise a child with Autism in a nurturing environment, the resilience to take continuous hard knocks and keep going, or the resourcefulness to make a path for myself and others.

So there it is, I guess.  There is my non-epiphany.  There is no black and white.  There is no sick or well.  There is only me taking responsibility and control for my very own journey.

There is beauty in dysfunction.  There is dysfunction in beauty.

Whatever it is today or turns out to be;  it is mine.

I took it back.

**********

Debby is a freelance writer living with her husband and only child (Everybody’s Boy) in North Carolina.  She is active in her community as an advocate for individuals who have Autism or who are otherwise “differently-abled.”  Debby works in the nonprofit sector, providing supports to maximize inclusion for individuals and their family members with developmental disabilities.  She aspires to practice the principles of yoga, but still finds it impossible to stifle a giggle when confronted with the term “downward facing dog”.  Debby is fluent in English, Frenglish, Spanglish and International Sarcasm and her special talents include the ability to eat practically any food with chopsticks, talking her way out of overdraft charges and telling pretentious stories about when she used to live “abroad”.

This post was originally published HERE and used with permission.

Stress and The Special Needs Mama

by Momma Kate, Created BEAUTIFULLY Special

Have you ever had one of those moments where your mouth falls open and you have to pick your jaw up off the floor? I had that very thing happen today. While I was having a rare ‘spa moment’…let me clarify…I was at the chiropractor to have my neck put back in to place, my doctor, who I’ve seen for 15 years, says to me, ‘You have stress in your life, don’t you?’. I replied, ‘Maybe a little…..’. He was pulling my chain. He knows what my life as a special needs parent consists of. Apparently, the areas in my body that were showing the most signs of needing attention were my neck, shoulders and head. Cue the tension headache. That leads me to address this area of ‘stress’ in our lives. Every single person has it. Let me make myself loud and clear. I know that the entire human race, special needs parent or typical parent, carries quite a load. Here, I want to focus on us special needs parents. To cover all the areas, lets break it down into sections.
First stop, Physical Stress. There are so many different ways that we have to care for our kiddos. Everything from lifting, changing diapers, dressing, bathing, feedings, giving meds, fighting sensory meltdowns, learning new medical treatments, daily therapy regimens, extra laundry, countless appointments, hospital stays, the average 2-4 hours of sleep every night for years on end….and the list goes on. Our bodies show the wear and tear of this schedule being repeated day in and day out. It’s inevitable! However, the duties that incur stress don’t stop here.

Let’s move on to the Mental Stress. Please tell me I am not the only one whose brain NEVER stops. The thoughts at 1am…. ‘I need to call Neurology in the morning to make sure that the Physical Medicine doc knows what the Developmental Pediatrician said yesterday.’, ‘I need to get that script moving for the Occupational Therapy.’, ‘Oh dear God, another surgery? Guess I should start taking care of….’. The ‘To Do’ list go on and on and on. We live and breathe the medical terms, diagnosis, meds, reactions, new docs, etc. We do things we don’t even know we do! We are subconsciously watching every single move, breath, swallow, and diaper, because at any given moment, we will be thrown for another loop, be in the Emergency Room, and the doctor will want to know the minute by minute detail of the last 24 hours. That includes what our child does while sleeping…..

How about the Emotional Stress? Yes, I will admit, I do cry in the shower. I try very hard to contain it there, because I don’t want Boo to think I’m upset about her. Sometimes though, Momma needs a good cry. Let’s face it, we are talking about life-threatening situations not just every now and then, but daily. Whether it’s a serious medical crisis or a sensory meltdown that propels your child to run from you in the parking lot, your emotions and body are always on guard. Add in what other people think about what you are doing…. you might as well call it a day!

Anyone have Marital Stress? First off, let me say that I absolutely adore my husband. I married the man because I not only love him, but I like the person he is. Yet, I am so drained by the time I get alone with him, that I come across grumpy and short because the only thing running through my mind is, ‘Get me to my pillow so I can get just a little sleep’. In our 6 years of being parents, we have been alone maybe 4 nights. Usually, once we are completely alone, we zonk out! We are both so drained from the day in and day out of special needs caregiving, that we snuggle down in and saw logs! There are some areas that we try to do daily, weekly, monthly…  We try to laugh a little and tell each other, ‘I Love You’ every day. To know that even in the midst of this craziness, we are still important to the other. At night, when all is quiet… at 10p or 12a, we sit on the couch and snuggle to a comedic tv show. Something that takes our brains to a lighter level. We are working very hard at trying to get one meal a month, just the 2 of us. No kids, just the 2 of us on a ummmm….what is that? A DATE! Yes! Sorry, I still get butterflies.
If you are like me, you also have other children who need a Momma too! They are just as important and need to be held, listened to, and encouraged. When the heck to you have time to clean, do laundry, grocery shop, weed the flower beds……my time is usually between 9:30p and 2a. When I want to be with my hubby or sleeping. See, you are not alone!!!!! It is a seemingly impossible situation that we live in!

I want to take a second to chat with those of you who are on the outside looking in. Maybe you are a grandparent or a friend to someone who has a special little kiddo. I hear often that people don’t know how to help or what to do. Listen to me loud and clear. It’s little things that mean the world to us. Drop off a meal, but be sure to know if there are adjusted diets. Offer to come and clean the toilet, mop the floor, make the beds, fold some laundry, any little quick job that helps us ‘feel’ better. Give an hour of your time for whatever we may need. Send a card of encouragement. Call and see if there are some grocery items that need picked up. Run thru Starbucks and get Momma her favorite drink…odds are, we haven’t had one in ages. Realize that we may not be able to talk on the phone due to our daily routine, but we thrive on adult conversations. Stop by, and just chat about something besides medical terms. We are still people on the inside that are getting buried by this life we live. In stopping by, please don’t judge our house, appearance, or expect us to wait on you hand and foot. Our world never stops, so those around us need to be willing to hop on the ‘treadmill’ and walk a mile in our shoes. Most of us have no life outside of Special Needs. That is the truth. We are not ignoring you. We are simply immersed into giving our child(ren) the most normal life possible. Things that  the world takes for granted. Please, be understanding and for a moment, learn what it’s like and put yourself in our position. We need you like you need us.
Mommas, my doctor reminded me today, what we have all heard a million times. You can’t give to those around you unless you have given to yourself. He encouraged me to take 5 minutes a day to recharge. Close your eyes and breathe. Read a chapter in a book. Pray. Paint your nails. Listen to a song. You have read those articles that talk about our stress levels being comparable to combat soldiers, right? Shaving somewhere between 5-15 years off of our life expectancy. You are worth this. Your family needs you. Start right now. Give yourself some air and remember, that you have been Created BEAUTIFULLY Special.

**********

I am an almost 30 year old SAHM with 3 kiddos and am married to my prince charming. I quickly learned that life would not go according as planned when our first child was born with Cerebral Palsy. Now, at the age of 6, our little girl has almost 20 separate diagnosis and is our miracle baby. The doctors didn’t expect her to live past her first birthday, but she has proven them all wrong. ‘Created BEAUTIFULLY Special‘ was born in my heart to show what the special needs journey is really about and to showcase individual kiddos beating the odds.

This post was originally published HERE and used with permission.

Taking Care of Me

by tenaciouscee

It’s been a really long time since I’ve felt like writing. There has been so much going on, too many emotions, ridiculous amounts of stress that I finally realized I’ve been completely neglectful when it comes to taking care of myself.
Today, I decided that needed to change. Immediately.

The summer has been challenging to say the least. Between my son’s sensory dysregulation, my daughter graduating grade school, and miserable back to back heat waves, my whole family has been feeling the pressure.

This morning after returning home from camp drop off I made a conscious decision to abort any productive plans I had in lieu of spending quality time with myself. I deserved it, I thought.

It started with some puppy love. Just sitting on the sofa and snuggling the two furry, loyal critters in this house who don’t talk back.

Then I decided to make breakfast. Not an eatoverthesinkoutofthepoticookedwith kind of breakfast, but a real meal eaten on real china at the dining table. You know, like a civilized human being.

Something remarkable happened… I enjoyed a meal in peace. I turned on some music before I sat down and spent Ten! Whole! Minutes! to eat my food while it was still hot. I even put the fork down between bites! I know that’s something that I haven’t done in years. I’m always rushing through my meal in a desperate attempt to finish it before the next kid related crisis occurs. It was a wonderful experience. I actually tasted what I was eating for the first time in ages.

When I had finished my breakfast I not only felt like I had nourished my body, but my soul as well.

In the tiny amount of time I spent taking care of me, I discovered that I don’t always have to feel like a cranky, stressed out mom. I deserve to feel important in my own life. I needed this time to just…breathe.

When it was time to pick my children up from camp, I felt like I had taken a mini vacation. I actually felt…calm. The frazzled woman at drop off had been replaced by a happy and rejuvenated mama.

We ALL deserve a little “me” time. Find just ten minutes a week if that’s all you can spare and take care of YOU. Its so easy to forget yourself in the daily shuffle of a busy life but if mama is broken, so is every single thing around her.

What are you waiting for? Go find your ten minutes and take care of YOU!

**********

This post was originally published HERE and used with permission.

Courage and Faith

by DQ, So Far

It takes courage and faith to put on the oxygen mask.

Courage to choose myself first.

And faith that it is OK to do so, OK to choose me, and that it is OK to live life for myself, too.

Some wonderful writers have already shared the impetus behind making the change – the awesome Alysia has taken her inspiration to a higher level – by starting a project to share, encourage and support other parents who are feeling the same ways about life (often, but not exclusively, with autism).

How lost a person can feel.

I felt very lost for quite a while.  In the later months of 2007, I dived into everything about autism.  I submerged myself, I became what my son needed and continues to need – an advocate, protector, teacher, therapist as well as mum.  I had to be informed, I had to learn, I had to understand what the best choices for him were.

That is where the courage and faith comes in.  I had to be brave to step up – yes, it was automatic but, damn, it took courage, because I felt like I was not enough – not patient enough, not strong enough,  to take it all on.

At the time of diagnosis, just over 4 and a half years ago, I felt like I was drowning in overload.  It seemed too much, too scary, too unknown, too big a mountain to climb – that I didn’t have what it took to be what my son needed.  But I did it anyway – because of love, because I just had to.  Regardless of fear and self doubt, I had to.

Looking back, how I did that was interesting.

With hindsight I know exactly what happened.

In the moment of hearing the words ‘your son has autism’, the wave of grief crashed into me, I reeled and tried to hold on to what I knew – and it seemed like suddenly I didn’t know a thing – except that I loved my son with every fibre of my being and that I would fix him.  I shoved everything I had imagined for myself and my family aside – the expectation of return to work, of adventures, of travel, all the idealized imaginings of family – and put my son first – above everyone.  I needed to do that for him.  The compassion that came with his diagnosis was in the truest meaning of the word- awesome.  I felt a physical shift in my heart, the compassion for my son multiplied to what felt like infinity.  It was glorious and a little scary.  What wouldn’t I do for him?

That is a very interesting question.  At first, I did everything.  I turned myself inside out.  To the point where I felt like one of his limbs.   It seemed that he needed me for everything.  Our connection and co-dependence was powerful.  It dominated every aspect of our family life.  I became a unit with my son.  It was a very unhealthy existence for us both.

Now, I am working with him on his independence.  Just the other day, I watched as he went to the fridge and got himself a glass of orange juice.  He even remembered to put the lid back on it, and put it back in the fridge after he poured his glass.  Simple yet important. And a little bit magical, to me.  I am now in awe of him in a totally different way.

In the process of doing everything I could think of for my son, of turning myself inside out, of putting my needs constantly behind his, I got lost.

This seems to be a theme that resonates throughout many blog posts I have read recently.  I felt as though I had lost my identity, my sense of self.  I felt that I had lost out, too, on a truckload of ‘might -have- beens’; what my life, my family’s life might be like without autism?

Today, I don’t consider myself lost at all.  I have actively spent the last 12 months working towards many things, including finding myself.  For me, last year was the beginning of my own Oxygen Mask Project.

I consider it a lifelong project.  The kind of person I am, the personality I have, means I am going to have to actively do this work for myself forever.

I took things one step at a time.  I sought the help I needed, and I continue to seek it.  I went after and got two casual jobs.  I love them.  They enrich me and bring the kind of engagement I didn’t even know was missing from my life until I started them.  It is tricky juggling everything. But it is worth it.

I have set my personal compass to my own path, not my son’s.

He needs me, perhaps he always will.  But his own developmental story tells me he is going to be OK in the ways that matter most.

I have also learned so much from autism.  I have a different life than I anticipated, certainly, but I also have many blessings – knowledge, experiences and above all, awesome people in my life because of autism.  I don’t think autism is a blessing, please don’t misunderstand me.  I have learned to work with autism, rather than against it.

By looking after myself on every level – mentally, physically, emotionally and spiritually, I can be around for a long, long time.  The biggest realization I had last year was that this blog is not the best place for my journey.    That is why I have decided to begin a second blog, it is called So Far.  I will continue this blog, especially now that I have a clearer idea of the kinds of things I want to write about for myself, and for our continuing adventures with autism.

So, the story behind my Oxygen Mask Moment is quite involved.   I am going to share it as honestly as I feel comfortable with over at my other blog.  If you are a fellow traveler on the Oxygen Mask Project, I hope you can join me there.

“Be glad of life because it gives you a chance to love and to work and to play and to look up at the stars.” – Henry Van Dyke

**********

I am a happily married mum with two sons, Captain Nintendo and Perky.  Perky is 8 years old and has a diagnosis of Autism Spectrum Disorder including Sensory Processing Disorder.  Captain Nintendo is 10 years old and has a diagnosis of Sensory Processing Disorder, including Central Auditory Processing Disorder.  I currently work casually as a museum educator (my first calling) in two cultural institutions in my home city and thoroughly enjoy it.

Enough Is Enough

by Ilene, My Family’s Experience With Autism

I’ve never been what anyone would consider an athlete.  I’ve never even been what would be considered “in shape”.  I walk faster than I run, and it’s not that I’m a fast walker.  I’ve never been a fan of stairs.  But I’ve always been able to get by.

A couple of weeks ago my husband and I took our 3 kids on a vacation to a resort with my husband’s family.  One of the things that all of my kids were looking forward to was the indoor water park that they had on site.  There were several water slides that EVERYONE was excited to try.  Big Brother is a typical 7 year old and, once he realized that his swimming level wouldn’t stand in his way, he was able to do anything he wanted.  He went up the 4 flights of stairs and down those slides so many times I couldn’t tell you the numbers even if you held a gun to my head.

But Ballerina and Music Man can’t go up there unsupervised.  They are both 5, both Autistic, and really not capable of understanding things like “waiting their turn” when someone isn’t there to hold them back.  Plus, Ballerina isn’t allowed on the slides herself because she’s not 48 inches tall (Music Man MAY be that tall [he’s close if not there], but we never stopped to check).  So, every time they wanted to go down one of those 3 slides, they needed someone to go with them.  Dad was uncomfortable with the thought of going down those slides himself, so it fell to me to take them up there.

They had a BLAST!!!!!  They loved going down these slides sitting in a tube going through this dark tunnel.  They liked the echo their screams made (which surprised me to no end) and they couldn’t wait to go down again.

Can you see the problem here?  Their ability to go down the slides, like any other kid, wasn’t an issue.  The issue was ME.  Every time they were going to go down the slide, I had to climb up the 4 flights of stairs.  I had to carry the 2-person tube if we were going down the “pink slide” (which only happened once).  I had to find the energy in my legs to make it up there over and over and over again.

Most times I was able to distract them – tell them to go to the “fort” which happens to have a couple of water slides on it’s own and is something that they can do without my help.  I tried this every time we finished going down a slide, just to give me a break.  But finally, Music Man realized something – if he started going up the stairs, he’d get to go again because I had to go after him and by the time I would catch him, we’d be near the top and I needed the break by going down the slide..  The barrier stopping everyone from getting on the slides wasn’t at the bottom of the stairs, but at the top.  So, as soon as he got off the tube, he immediately started going up the stairs and I had to follow him.  In the 3 hours or so we were at that park, I probably climbed up there at least 20 times.  To say I was EXHAUSTED would be an understatement.

I need to do something.  I need to lose weight, and I need to get into shape.  My kids deserve the opportunity to do the things that everyone else gets to do, even if it means they have to do it with me.  They deserve to go on a water slide and not be limited by my lack of physical energy to get up those stairs.  Because they really did love it there.

We have a Wii.  The original excuse for getting it (which hasn’t happened in the 2.5 years we’ve had it) was to use some of the Fitness games.  Well, that’s going to happen now.  I purchased the game for The Biggest Loser because it claims that it works for all body types, all weights and all abilities.  I’m going to use this every day and try to get into some kind of shape.  I’m going to change the way I eat and work on finding some energy.

Because if I don’t do something, and soon, I won’t be there for my kids.  What greater motivator is there?

**********

My name is Ilene and I’m a happily married stay-at-home-mom to 3 wonderful children.  My eldest is a typically developing 6 year old first grader.  I also have a set of girl/boy twins who are recently turned 5, both diagnosed with Classic Autism.  My daughter has also been diagnosed with ADHD.

Life is not what I imagined it would be at this stage, but it’s still my life, and it’s good.  We have good days and we have bad days, just like everyone else.  I started blogging to cope with things not progressing the ways that I wanted them to go.  Sometimes I vent about problems.  Sometimes I share in a glorious moment.  Sometimes I try to educate others.  It really depends on what I feel like saying when I sit down at the computer to “blog”.  But I do promise that everything I write is honest and heartfelt, even though I may contradict myself from time to time as I learn new things.

I hope to share with others what we go through.  And I hope you enjoy reading our stories.

 

Happy Mama Retreat

by Kay Marner, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories

Take Care of Yourself in a Big Way at the Happy Mama Conference & Retreat: A weekend getaway for moms of kids with ADHD, ASD, FASD, and other brain-based disabilities

This mama ain’t been very happy lately. In fact, my never-ending worries about my 11 year old daughter, Natalie, who has ADHD, sensory processing disorder, anxiety, and is on the fetal alcohol spectrum, have put me in a real funk. Most days, my bed starts calling my name by mid-afternoon. I’ve had zero motivation to work or do most anything else. I’ve felt like avoiding any and all social interactions. This funk has been severe enough, and lasted long enough, that I decided I had to make a conscious effort to do something about it—to take better care of myself. So, I made a few small changes in my daily routine. I started going for a short walk several days each week. I pulled my vitamin and mineral supplements out of the cupboard and recommitted to taking them daily. I gave myself permission to spend more time reading for pleasure. I’ve been scheduling a few lunches out with friends.

I firmly believe that when you’re living with the stress of raising a child with special needs, you have to make a conscious effort to take care of yourself. After all, as the saying goes, if Mama ain’t happy, ain’t nobody happy. Even small investments in your own well-being, like those I listed above, can make a difference in how well you cope with day-to-day challenges.

Yes, small is good. But big is even better! So, I’ve also pledged to do something significant. I’ve registered to attend the Happy Mama Conference & Retreat, a two day getaway especially for moms of kids with special needs.

The Happy Mama Conference & Retreat will take place July 28–29, 2012, at the Rock Barn Golf & Spa, in Conover, North Carolina. Here’s what the retreat is all about, as described on the Happy Mama website, www.if-mama-aint-happy.com :

What: A CONFERENCE that focuses on your needs as the mom to a child with a very real, but invisible, brain-based disability, like ADHD, ADD, OCD, ODD, FASD, PBD, SPD, PDD, or one of the many other overlapping conditions that make parenting your child an extra challenging situation, and a RETREAT, where we’ll provide you with wonderful food, spa opportunities, fun activities, and camaraderie with other moms who know exactly where you’re coming from.

Why: Because parenting children with invisible disabilities is an extremely stressful, isolating, and emotional job and one which can impact your health and well-being in a negative way.

 

The retreat, hosted by DRT Press (publisher of the book I co-edited, Easy to Love but Hard to Raise) and the website {a mom’s view of ADHD} (founded and edited by Penny Williams) and supported by a growing list of sponsors, including CHADD and the Catawba Valley Medical Center, will offer the perfect blend of education, support, and pampering.

Saturday’s speakers will cover: “Parenthood, Stress, Health, and Resiliency,” “Advocating for Your Child in School,” and “How to Be Happy: Calming Techniques for You and Your Child.” Sunday will be devoted to fun and pampering, which may include spa treatments, relaxing by the pool, gem mining, hiking, yoga, horseback riding, or kayaking.

Doesn’t that sound fabulous? I can hardly wait!   

By interacting with other parents of kids with special needs via the Web, I’ve learned that support from others in my situation is the best support there is. My ADDitudeMag.com blog, “My Picture-Perfect Family,” is one avenue for those interactions. To celebrate the 4^th anniversary of that blog, and in honor of the support and community we parents of kids with special needs offer to each other, I’m running a contest. I will sponsor one lucky mom’s registration, travel and lodging expenses (not to exceed $1000, some meals included, some meals, activities and miscellaneous costs at winner’s expense) to attend the Happy Mama Conference & Retreat. For more information, and to enter the contest, click here. The contest ends at 5:00 pm EST on May 30.

If you are interested in attending whether you win this contest or not, please don’t hesitate to register now. Registration is just $129 until July 1. If you are “in the business” of ADHD, FASD, ASD, or other brain-based disorders and wish to become a retreat sponsor, email happymamaretreat@gmail.com for their sponsorship package.

In the meantime, take a few steps, big or small, to take better care of yourself. You work so hard to bring happiness to your special child. You deserve to be happy too.

*****

Kay Marner, a freelance writer and editor, is the co-editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories (DRT Press, 2012). Marner contributes regularly to ADDitude magazine, and her ADHD parenting blog, “My Picture-Perfect Family,” appears on ADDitudeMag.com. You can reach her at kay@kaymarner.com.

How This Mama Got Her Groove Back, All By Myself

by Linda, Outrunning the Storm

I’ve known I’ve needed it for a long time. But, it seemed so self-indulgent. It seemed like too much to ask for. But, it’s stayed there, circling around the back of my mind, like a far off fantasy.

But, lately things have been different.  Charlie has been doing great. The crisis in our lives is over for now.  It’s time to move on. It’s time for life to get back to normal. It’s just that I haven’t been able to do that. I can’t seem to stop waiting for the next problem to come along. I’m staying in crisis mode. I’m not looking ahead. I am certainly not relaxing.

But, last week, for no reason in particular, something just finally clicked for me. I knew it was time to switch gears. I knew it was time to let go of my constant vigilance and learn to relax again and enjoy the peace. And I knew just what I needed to get there.

So, I went online and I booked a weekend at a local spa hotel. I booked the romance package. The kind that comes with a couple of spa treatments included, plus some champagne, chocolate covered strawberries, and a cheese plate in your room upon arrival.

I was giddy with excitement all week, just waiting for the weekend to come. I put aside some meals in the fridge, I cleaned the house, I rounded up family support for the weekend, all with a smile on my face.

Then Friday afternoon came, I packed my bags, kissed the boys good bye, spent a half an hour talking Charlie back into the house after he seat belted himself in the car in an attempt to go too. I couldn’t blame him for wanting to come, it was going to be pretty cool.

Finally, I kissed The Professor good bye and headed off for my romantic spa weekend

ALL

BY

MY

SELF

{sigh of  relaxation}

It was incredible. I put on my giant fleece pants, I lounged in my king size bed eating my cheese and strawberries and drinking my champagne. I watched cheesy movies, I got two separate massages. I napped, oh how I napped.

And then I wrote. I wrote and I wrote and I wrote.

Not for the blog. Not for anything really. None of it will ever see the light of day. But, it got me to peak out of my bunker. I can accept that it’s time to start to invite friends over to our home again without worrying about Charlie. It’s time to start meeting friends for lunch again without worrying about the school calling.

There is no longer a crisis holding me back. It’s just me and my fear.

But, me not living my life, not taking what I need when the times are good, doesn’t help Charlie if he starts having trouble again.

It just depletes me, drip by drip, of being the whole human being I deserve to be.

**********

Linda is the mother of 5 year old twin boys, one who is on the autism spectrum and one who is not.  She writes a personal blog at Outrunning the Storm and was instrumental in starting the Autism Positivity Day Flash Blog. Her journeys are crazy, maddening, hilarious, and painful just trying to stay one step ahead of the storm.

This post was originally published HERE and used with permission.

Just Like That

by Becky, Building On Joy

And so I decided to start exercising & that led to starting a running program.  Well, a walk/jog program.  You can read more about how I got started.  About 3 weeks ago, I didn’t plan to exercise. I didn’t want to exercise. I really hated the idea, although I knew I needed it.

Today I did my first full Couch to 5K workout outside, and it was tough.  But I completed the WHOLE program for today.  I’m pretty sure that my jogging pace may actually be slower than my walking pace (ok, not really but, well, maybe!).  The way the Couch to 5K program is structured is that for the first week you walk 5 minutes, then alternate 60 seconds of jogging and 90 seconds of walking.  You do the jog-then-walk combination 8 times.  I was ready to quit after 2 times.  I was positive that I’d not get through the third jog, let alone move on to the third walk segment.  But I watched my time, and when it was time to jog, I jogged.  All 8 times.  And then I walked, all 8 times.

It was hard.  I was sweaty.  Yuck.  I came home and plopped onto the couch and told my husband that I was pretty sure I was going to die.  But of course I didn’t, or you wouldn’t be reading this post! 😉

The picture above was going around Facebook this morning and it captured – perfectly – why I started exercising, and why I didn’t quit this morning.

I think we – ok, I’ll speak for myself here, not all of you – I think I live so much of life “because it’s the way I’ve always done it” and that’s just not cutting it anymore.  That’s “mindless living” in my opinion.  There’s nothing intentional in that kind of living.  I know I wasn’t aiming to be unintentional in my living – I probably even decided that I was being “efficient” by just doing the same thing I’ve always done.

But the need to be intentional is currently a big key in my life.  And so it is in this aspect of my life as well, it turns out (imagine that!).  It’s now nearly noon, and I’ve not accomplished as much as I could because I took time out to exercise.  However, I think I’ve accomplished one of THE most important things I needed to do today, because I took time out to exercise.

Are there things in your life that you’re looking to change?  It’s not easy – I’m not here to tell you that it is.  But making intentional choices is the place to start.  Look at what you’re wanting to change.  Decide what you need to do to make that change, and just do it.  Don’t listen to the doubting or the parts of you that say, “No way!”  One step at a time.  One choice at a time.  You CAN do it.

**********

Becky lives near Philadelphia, PA. She is married to Tim and they are parents to 3 children – two boys and one girl.  Her second son, “Picasso”, has Sensory Processing Disorder along with an Asperger Syndrome diagnosis. Picasso loves making art using various mediums and sometimes chooses to sneak Sharpies for use on surfaces in the home (read: bathroom cabinet, doors, walls, lightswitches, etc.).  She blogs about special needs, homeschooling, and family life at www.paintingwithpicasso.blogspot.com .  Becky also enjoys coffee, reading, music, knitting, and is working hard at taking better care of herself, in order to care better for her family!  Check out her new blog Building On Joy.

This post was originally published HERE and used with permission.

Dear Diary

by Karen, Confessions of An Asperger’s Mom

Warning: This Post is in exercise in self-pity.

I’ve been a really strange mood lately.  I want to be alone.  I don’t want anyone talking to me because I’m afraid I may bite their head off.  I don’t want anyone asking me any questions about what I’m doing…what I’ve been doing…what I’m supposed to be doing.
Yet, when I am alone I’m still not particularly happy.
I am full of thoughts of self-doubt –constantly questioning my parenting decisions.
I am feeling bad about what my kids are facing.
Feeling guilty that the latest medicines that we are trying with Blue -are not working the way that I hoped they would.

I am so happy with my blog and my facebook community.  I love the work that I am doing in helping others feel less alone.  But then I start looking at our financial situation and all of the things we can’t do because I don’t bring in an income, then I start with the guilt.  We are stuck in the small breaking-down, falling apart house, because we don’t have a second income.  I am driving the 10 year-old car with all of the funny noises, because I haven’t done anything to change that.  I am writing and doing what I love, but I can’t brush away the thoughts of feelings of, you need to get something published.
You need to be making an income.
What the hell happened to you?
You used to be so independent! 

I start thinking about my friendships.  I am blessed to have a lifetime of friends all across the miles, from West Virginia, to California.  My best friend lives a few hours away in Houston.  I love her.  She is my sanctuary. Literally, she provides respite for me every couple of months.  She is the one person that can say anything to, without fear of judgement and she can do the same.  We can talk and text message every day with our most hideous, most ridiculous thoughts and feelings and then laugh and make jokes about them. Then days can go by with no contact, but I never doubt our friendship.

I have extremely close friends in California where I grew up.  I have friends that I have known since I was in middle school, high school friends, friends from my early 20’s and so on.  I am proud of these friendships…how no matter how much time goes by without contact, when we do talk or see each other, it’s as if we just got together yesterday.  There is no animosity about the different directions our lives have taken and how little time we have to get together or call each other.  I love, value and treasure these friendships.

Most of my girlfriends from L.A. have at some point taken time out of their lives to come here and we have great visits together.  Or when I go there, we must see each other and our time together is just…like home, warm and familiar.

Then I have my virtual friends.  I have developed some great friendships through blogging and facebook.  People who think about me…send me special notes of love and support.  People who make me smile on an almost daily basis.  Women who get EXACTLY where I’m coming from because they too are parents of kids with special needs.  I can make quick contact with them when it is convenient for me from my laptop or phone.  In fact, this ability has made it so convenient that I seldom actually have conversations on the phone.  When I do talk on the phone, I am almost always interrupted by one of my kids, my mother, my husband or even by another phone call…like from the school.

I have somehow let my friendships with local friends dwindle down to next to nothing,  which I feel really guilty about.  I wonder if I’ve lost these friendships.  Living in Texas has been the only time in my life, where I have actually lost friendships and been disappointed by people who I believed were friends. Sometimes I wonder if it is connected to being a special needs parent.  Some people don’t get-it…don’t want to get it…get sick and tired of hearing about it.

I have a group of friends I used to entertain all the time here at the house.  We would eat, drink, laugh and talk into all hours of the night.  At some point Blue would become extremely stressed out and ask me,
“When are they leaving?  It’s time for everyone to go home so I can go to bed!”
At which point, I would say, “They aren’t in your bedroom.  Your bedroom is upstairs.  Just go to bed.”
“I can’t!”

So slowly the parties have slowed down.  The invitations have slowed down.  Lives have taken different directions.  Friends have had babies, which certainly changes the dynamic and trajectory of your life.  Others have been promoted on their jobs, family dynamics have changed where both spouses are now working outside the home, which means that time for friends and entertainment has changed.

But when I’m alone and in deep thought…I question myself.
Did I do something or say something? 
What happened to our friendship?
Why am I so paranoid?
I’m a good friend…when I have time to be one.

I am now taking care of my mother who is living with me.  Though she is only 72, and has relatively good health,  she still depends on me to help her take care of all personal business, take her to all of her appointments, both medical and otherwise, take her shopping and entertain her at least once a week.  Otherwise, she would never get out of the house.  This takes away from my time to get together with girlfriends.

I am no longer going to workout on a regular basis, which means I don’t see my Y -workout girlfriends as often.  We do get together every couple of months for lunch or coffee and catching up.  I joined another local recreation center, which is closer to home.  Yet, I can’t seem to make it over there with any sense of regularity.

The last time I had lunch with my workout girls, they asked me to come back to the Y to our Yoga and Zumba classes.  I really want to, but as summer approaches, I doubt seriously if I will have time to work out regularly.

So basically,  my life is totally out of balance and I have to figure out a way to somehow close some of these gaps and get my sh*t together.  All of this while the summer is approaching and I have to figure out ways to keep the boys busy and away from each other as much as possible.  I’m looking at camps,  therapists, social groups and vacations.
Oh yeah…and then there is the house and all of the many little projects that need to be done around here.
It all seems so impossible.
I guess I just have to make a list and try to do one-thing-at a time…
one-day at a time.
I wonder how many days I have left where I can say that?
Life is short and yet it seems to be going by so fast!
If only I wasn’t such a scatter-brained, unorganized, discombobulated mess.

**********

I am a full-time mother of 3 boys (4 if you include my husband).  The boys are ages 24, 16 and 13.  Both teens are on the spectrum. My 24 year-old is thankfully out of my house, but unfortunately, about to be deployed to Afghanistan.  I have been advocating for my sons, with doctors, schools and therapists since they were toddlers. I run an interactive Facebook community https://www.facebook.com/pages/Confessions-Of-An-Aspergers-Mom/113171498759099?ref=tn_tnmn, where those in the virtual autism/Asperger’s community can come to share information, laughter and vent with one another. On my blog I write honestly and openly, often using humor to share the reality of our life. I want the world to understand and accept autism, instead of judging it from a point of ignorance. If that means getting naked for the whole world to see…then so be it.  Hopefully…you won’t laugh too hard.

This post was originally published HERE and used with permission.