Tag Archives: My Family’s Experience With Autism

Time For Me

by Ilene, My Family’s Experience With Autism

There was a post here recently that made me think……the post talked about how, when Mom was away at a conference, she was able to do things WHEN she wanted to and HOW she wanted to.  She was able to shower at her leisure, eat meals when they were still hot, all the things that so many take for granted, but special needs parents struggle with every day.

Then I realized something about this summer.

I had been doing just that since school has let out.

Early morning routines were the same as normal – the insanity of getting everyone up, dressed and fed was still there.  But after they finished breakfast, I sent my 3 children down to the basement to play.  I gave them their phone, they could play on the computer, the Wii, with each other, whatever.  And I would make myself a cup of coffee.  And I would make breakfast for myself.  And I would eat it leisurely.  I would jump on the computer and check Facebook, perhaps play a short game, and they would all be downstairs.

I kept the door open, listening for problems.  I would go to the top of the stairs when someone needed something.

But in general, I had found that independence.  And because of it, here I am, 10 days before the start of the school, and I still have most of the sanity that I had at the start of the summer.

Sometimes you have to force things to happen.  As Nike used to say, “JUST DO IT!”.  If you need that moment, TAKE IT.  If you want to sit and have a cup of coffee while it’s still hot, then take 15 minutes and sit and sip that coffee.

I know this is much easier said than done.  And that’s never going to change.  But if you don’t take that first step, you won’t get anywhere.

Trust yourself, and trust your kids.  I’m not instructing you to go out and run your errands leaving them unsupervised…..just sit in a corner of the same room so you can still see them, if you’re not comfortable being separated from your children by a flight of stairs as I have suddenly discovered I can do.

When you wake up in the morning, tell yourself this.  I WILL take some time for me today!  I WILL sit and have a cup of coffee (or whatever the right thing is for you)!  I WILL give myself a 15 minute break to catch my breath.  And I WILL feel better at the end of the day for doing it!

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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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Filed under Remembering to Breathe, Taking the next step

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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Filed under Remembering to Breathe, Taking the next step

My Oxygen Mask Project, Part 2

by Ilene, My Family’s Experience With Autism

I wrote a post for this page about how I need to figure out how to take some time for myself to do some of the little things that we all used to take for granted before becoming parents.  It’s been a few weeks since that post and so I thought I’d show my progress, or lack thereof.

You see, it’s February.  February, 2012 is proving to be all about parenting.  We have had sick kids.  We have had doctor’s visits (both sick and well-child visits).  We’re taking Ballerina to see the developmental specialist.  We are visiting schools to determine the ideal kindergarten placement for both Ballerina and Music Man.  Music Man needs to be potty trained so we are tackling that as well over President’s Day weekend (going hard-core – underwear all day [oooh, that's going to be a fun weekend]).  We have an IEP Meeting scheduled for Leap Day (February 29) for Ballerina to review her updated evaluations and determine her placement for the next school year.  After that, I can finally take a deep breath.

You see, that deep breath is already planned.  The meeting will be over before lunchtime on that day and my husband is attending that meeting with me.  This past weekend, he received an email containing a pretty good coupon from Cheeburger Cheeburger, a restaurant that we both really enjoy when we want to have a pretty unhealthy meal (that’s just us – you can get healthy there too).  So, that’s what we’re doing when the meeting is over.  We are either going to celebrate the success of getting the placement we desire and the improvements she has made per the updated evaluations or we are going to console each other with a big chocolate shake and the best onion rings I’ve ever tasted.  We may even get chili fries to go with it – forget about the healthier burger!!!!

Sometimes life gets in the way of taking some time for yourself.  You can’t control when your kids get sick and sometimes we have to schedule things for the times that we would like to take a moment and breathe.  It happens.  The important thing here is that we have to make sure we take the time when the moments present themselves.

And on February 29, that’s JUST what I plan to do!!!!!!

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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.

Leave a comment

Filed under Remembering to Breathe

My Oxygen Mask Project

by Ilene, My Family’s Experience with Autism

I learned about the Oxygen Mask Project about 3 weeks ago.  My first thought was, “That’s not for me.  I can’t do this.  Everything I do is about my kids – they come first, no question.”  Then, about 2 weeks ago, I came to a realization.  I NEED this.  I have to start thinking of myself – maybe not first, but at least some of the time.  My kids are in full day school and preschool programs.  They aren’t by my side 24/7, even though they may be on my mind.  I need to find some time where I can simply be “me”. So, I decided to try it, and immediately went to the Facebook page and asked for help on how to start.

You see, I didn’t even know how to START.  That’s how far gone I was.  I tried going for a drive which, in the past, is one of the things that I would do to relax.  All I could think about the whole drive was autism, schools, placements, IEP Meetings, etc.  You see, parenting a special needs child is all-consuming for me.  I am reminded of a class project from 8th grade Sunday School.  The teacher asked us to find 3 words to define ourselves (individually).  And, most of the class chose words like “American”, “Jewish”, “Male/Female”, “Student”, etc.  For the last 2 years, I have been defining myself as an “Autism Mom” and really nothing else.

Now, I’m not saying anything AGAINST being an “Autism Mom”.  And I don’t think I’m ever going to stop being one.  I love my children more than anything and will do whatever I can to help them.  Now I’m choosing to help them by helping myself.  “Ilene” will be an “Autism Mom”, but will also be a “Friend” and a “Wife” and a “Human Being” who loves to relax by a fireplace and watch her mindless sci-fi television shows or listen to Harry Potter books being read to her by her husband or, when he’s not available, by Jim Dale on the CDs.  I can still be a blogger and a wanna-be parent advocate on the autism side of my life.  But every day needs to be about more than that.

30 minutes a day.  Right now, that seems to be all I can handle.  And how did I spent that 30 minutes yesterday?  Not by going clothes shopping or going out for coffee, but by helping my feverish NT 6.75 year old complete a Lego project when he stayed home from school.  My job was to locate the pieces he needed from the pile on the table, and he did the heavy construction.  It was fun, and it had nothing to do with autism.  And I got to spend some quality time alone with my firstborn child; something that just doesn’t happen anymore, either because he has to share my attention with his brother and sister or because he would rather spend available time with his friends.  It was a good 30 minutes.

If I can do it, then anyone can.  There are plenty of excuses not to try.  Believe me….over the last 2.5 years, I’ve tried them all.  But, if you dedicate yourself for just a few minutes every day even after the kids go to sleep…..read a book just for fun……watch a movie you wanted to see but just couldn’t take the time to go the theater when it comes on TV……make a phone call to your best friend who you haven’t spoken to in months because your kids are being too rowdy for you to have a conversation…….all of these little things count.

Taking care of yourself will make you a better parent.  I know this.  I’m still working up to doing some of the “big things”, like leaving the house without the kids with my husband (and leaving the kids in someone else’s care) without talking (or even thinking) about the kids.  I even know people who take overnight trips without their kids.  I’m not there yet.  And that’s fine.  Hopefully, that will come (well, maybe not the overnights).  Taking small steps is where I have chosen to start.  Now it’s time to see where that will lead.

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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.

5 Comments

Filed under Remembering to Breathe, Taking the next step