Monthly Archives: June 2012

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

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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.

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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?

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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.

 

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Vacation Without Dawson

by Cheairs, Redefining Typical

Photograph taken by my amazing sister Susan Lowe http://www.sflphotography.com

Mae Mae and I are on a two week vacation together. Laughing with friends, my sisters and their kids. The cousins are “putting on shows” and telling “potty jokes”. I am taking long walks and sweet naps. I feel the tension leaving my bones. I can breathe. My husband and Dawson are at home. Dawson can’t do long vacations. If he were here now I would be following him around a rental house as he turned on faucets and climbed in an out of all of the beds. There would be tension. Like the strings on a violin they would be strung tight. If you played the instrument the wrong way there would be a screech that would make you put your hands to your ears and squint your eyes.  If Dawson were here the orchestra would be out of tune.

The notes cannot be rewritten. They are set. I am okay with that. When Mae Mae and I return home we will have our own musical ensemble with Dawson and Dave. We will have different notes and sheet music. There will be moments in our performances that ring so sweetly and those that just sting.

So I miss my husband. I miss my little Dawsonator.

But I am so happy to have this time with just Mae Mae. She needs this time. She needs the sweet music to encircle her, and I need it to carry me. So I am happy.  I am sad. Like any good music you feel it.

So I hear…..the swirl of the creek, the laughter of children, and rain coming down on the roof. Being a part of this music now, in this special place for my vacation, it gives me the strength. When I return home I will be a stronger musician. I will be ready to be a part of my most unique and special jammin group. Our “Typical Band”  starring Dawson, Mae Mae, Dave and me.

And although our music sounds different than the sweet sounds here in this valley where I am now. It is because of this valley that I can hear and rejoice in the music that is my family and I love that.

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Cheairs can be found at Redefining Typical. She writes about her most supportive and gentle spirited husband and their amazing, sweet, and fun-eight year old son Dawson who has autism and their ever moving, energetic, and peace loving six year old typically developing daughter Mae Mae.  She writes about their life: the joy, the sorrow, the triumphs, and everything in the middle. She is forever in the process of Redefining Typical.You can also find Cheairs at her Redefining Typical facebook page.

This post was originally published HERE and used with permission.

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