Tag Archives: asperger’s

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.

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Filed under Remembering to Breathe

Breathing Freely

by Spectrummy Mummy

I’m not sporty.  At all.  The girl who never got picked for a team?  That was me.  My husband refers to me as “indoorsy” and he is spot on.  I enjoy getting cosy under a blanket with a good book or TV show.  I enjoy treating myself to cups of tea, or hot chocolate…actually, chocolate in any form.  Lots of chocolate.  I have a feeling that I’ll make the most content old person ever, having practiced for it all my life.  As long as my home has plenty of chocolate.  On a Saturday evening we’ll put the kids to bed, eat take out followed by treats and watch TV, just lazing around.  It does me good, but it isn’t good for me.

I don’t enjoy exercise in the way that I feel about my more passive pastimes.  But I need it.

Last year was tough.  For the first half of the year, I felt like I added an extra worry every day.  There were big things like additional diagnoses, assessments for the other child, moving to another country…and other big  things like a supportive friend moving away  and trying to coordinate therapies for two children.  That is the thing about life- there are never any little things, and before long I was suffocating under the weight of so many big things.  After more than a decade symptom-free, I was back on two different kinds of medication for asthma.  Just so I could breathe.

Once we moved, I knew I had to make changes if I was going to stay healthy for my family.  We found a babysitter.  Once the kids were in their respective preschools, I started going to the gym.  And though there were still stressors, they didn’t seem to weigh me down so heavily.  I no longer need the asthma medication- I’m breathing freely again.

Now I can’t get enough pure oxygen.  Last weekend we took the kids outside to play sports.  Pudding refused to join in, preferring to draw with chalk.  Cubby soon tired too.  We couldn’t compete with the allure of the other kids in our housing complex, who are impressively accepting of our kids, quirks and all.  Instead of sinking in a chair to keep an eye on them, I suggested to Spectrummy Daddy that we had a game of tennis instead.  We only have plastic Swingball rackets, and the balls didn’t have half the bounce our kids do, but we managed quite the game!

We used the driveway for a court, and both of us were running around for the ball, unable to convince the kids to collect the strays.  Before long we were both a little out of breath, but this time in a good way.  We had a good time, and it doesn’t hurt our kids to see us play.  Maybe next time Pudding will join in too.  Spectrummy Daddy even said he’d pick indoorsy me for his team.  Maybe we were all winners that day, but the score was love-all.

**********

Spectrummy Mummy is a British Expat living in Johannesburg with her diplomat husband, Pudding (an atypical five-year-old girl), and Cubby (a nearlytypical two-year-old-boy).  Her work has been published by The Telegraph, Parenting Magazine, Autism Speaks and others.  She has contributed to Hopeful Parents, The SPD Blogger Network and The Thinking Person’s Guide to Autism.  She writes about Asperger’s, Allergies, and Adventures Abroad at her blog.

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Filed under Remembering to Breathe, Taking the next step

The Great Water Challenge

by Kelly, iknowwhytheycallitaspergers

Navigating my way through the land of parenthood can be fantastic and challenging. Recently I decided to make an effort to be more connected to the parenting world, and this is when I stumbled upon the Oxygen Mask Project. After reading about the Oxygen Mask Project’s mission, I decided to take the challenge to do ONE thing each day to take care of myself, so in turn I can take care of my children. As many parents know, my needs tend to be at the bottom of the list… I am the last one to eat my dinner, my laundry is put away after everyone else’s laundry, and I am generally the last one in bed at night.

Parenthood is a marathon, and unfortunately there are no water stations along the way to force to pause and take care of yourself. Thus, I decided the one thing I would do to take care of myself is to drink water everyday for 30 days. How hard could that be? Water being the metaphor for pausing, breathing, and remembering I have to put on the oxygen mask first before I can help me kids. 

Day one of my challenge seemed easy. Then by day two and three, I had already forgot what my goal was. I even remember laying in bed thinking, “I did drink a sip of water at lunch, right? That counts”. Now wait a second, my plan was to drink water, at least 8 ounces to a gallon a day. At yet, I am now accepting a sip of water as taking care of myself?! Really this is symptom of a bigger problem, I have to plan to take care of myself or I will squeeze it out of my schedule.

I had to step up my game if I was going to meet my simple goal of drinking water everyday for 30 days. First, I had to buy bottle water at the store, in a large container and smaller travel bottles. I find if I don’t have the bottled water staring at me every time I open the fridge, I will get amnesia and won’t drink it. Next, I had to start thinking about my day, and plan when I would have a chance to drink water… eating out, bringing a bottled water for the car, using the water machine at work. Who knew I would have to plan for water? Finally, I had to trick myself to make it a priority. “You can have another cup of coffee, if you first drink a glass of water”. Mind games.

But doesn’t this water analogy define what it is like to take care of yourself or not take care of yourself in the journey called parenthood? I find I have the best intentions to care for myself but when the rubber hits the road, I drop my needs like a hot potato for someone else or because I get lazy. Thought. Planning. Follow-through.

Today is day 16 of “The Great Water Challenge”… in fact I am drinking water right now, just so I can say I am! Wish me luck, as I wish you luck on your journey.

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Mother. Teacher. Wife. Graduate Student. Runner. Friend. Blogger.
I am the mother of two beautiful children, my son is six years old and my daughter is two. I currently teach fifth grade part-time and I’m attending graduate school for the fourth time (I know overachiever, or crazy!). Recently I started writing a blog about my adventures raising my son, who has Asperger’s Syndrome. Humor, tears, sugar, and running are how I am survive.
Please check out my blog: http://iknowwhytheycallitaspergers.com/

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Filed under Remembering to Breathe, Taking the next step