What does it mean to be an Autism parent?

It’s a question I get asked often.  What is it like to be an Autism parent?  Well, it’s just like being a parent of a typical kid…wait, Seth is a typical kid, we’ve just had to adjust our definition of typical.  But I know what they mean when they ask.  I know, most of the time, it’s not in a mean-spirited way, just curious about what our life is like.  Yeah it’s like parenting a kid without Autism, but there are some differences.

1. Be prepared for anything.  When I say that I mean ANYTHING!  Your typical brain cannot fathom what his Autism brain can.  I constantly have to tell Seth he cannot fly.  He really thinks he should be able to.  When I tell him it’s a very serious thing.  It’s not joke to him.  It means I have to be on constant guard watching to make sure he doesn’t try to fly!  A recent conversation between Seth and my 6-year-old Mack went something like this:

Seth: Dear God please help me to fly.

He jumps from the couch and lands soundly on the floor.

Mack: God said no!

Thankfully Seth accepts that God says no sometimes.  It has not stopped his perseverance to learn to fly, but in that moment No was okay!

2. Wandering away is a real issue.

Kids run off.  Kids hide from their parents.  But Seth is a wanderer.  He has no concept of danger.  He gets curious and he explores.  He doesn’t bother with asking, telling or anything.  He just goes.  He goes in the middle of the night when everyone is sleeping.  He leaves the zoo petting area at the fair to wander off.  He gets out of the van while at a stop sign and runs into a field.  He is a wanderer.  It’s scary and as of this day, no one knows what causes it or how to stop it.  So we do what we can to prevent it.  We have alarms on our doors, we are hyper -vigilant when we are in public and when we are doing something with a lot of people, I always take a picture of him so I know how he is dressed in case he wanders off. Wandering is scary.

3.He’s labeled before people meet him

People know my son has Autism.  People have a general idea of what that means before they meet him, but people have no idea how amazing he is until they meet him.  No he’s not a savant, and he’s not Rainman (although he has Rainman moments), he’s verbal and he is very sensitive.  He has no social filter and he doesn’t care!  He will burp, pass gas or any other thing that we all see as rude and not think a thing about it.  He’s not being ill-mannered.  He really just doesn’t understand the social graces that go along with these things…and he doesn’t care!  We have taught him to say excuse me, but that’s about as good as it’s going to get!  While he is not a savant, he is incredibly smart!  He remembers everything!  I mean EVERYTHING!  He gets very exasperated with us when we don’t remember everything!  I should start taking notes!

4. Every word you say to your child could be taken a different way!

Seth is a very literal child, most kids with Autism are.  If you tell him it’s raining cats and dogs he will go to the door and look for cats and dogs falling from the sky.  There are times when this is a fabulous way to view the world, but if you think of some of the other idioms we use in everyday language you can begin to understand why kids/people with Autism seem to be confused sometimes.  I don’t think I could navigate easily in world where people saying things that confuse me.  Think of living in Italy and not speaking Italian.  Same concept.  Here’s a few that always make me laugh when Seth hears them.

Barking up the wrong tree

Beat around the bush

Costs and arm and a leg (that’s a favorite around here!)

Hit the sack

Let the cat out of the bag (Seth would literally put a cat in the bag if he had the chance with this one!)

Once in a blue moon

5. Experience joy like you never imagined

All parents experience joy with their children.  I think for parents who have kids with special needs joy comes in many forms.  We don’t always get the typical milestones at the typical ages, so sometimes our joy in typical behavior is delayed.  I find joy when my son goes to the bathroom independently and doesn’t try to flush the soap down the toilet.  I find joy when he comes and gives me the biggest bear hug, almost to the point that I can’t breathe, because some doctor somewhere told us he wouldn’t be affectionate.  I find joy when he dresses himself correctly.  I find joy when lies to me.  I know that one is a little odd, but I do find joy in it.  Kids with Autism, typically don’t lie.  They can’t.  It’s too stressful for them. They have a very defined sense of right and wrong.   So when he lies to me, there is a certain amount of joy in it.  Of course I correct him and call him on it and tell him that lying is wrong, but it still brings a little smile that he’s trying to be a typical kid.  Finally, the one thing that has filled me with joy most recently is when Seth participated in his school’s Winter Concert.  He was on state with 500 kids singing, and do the action and movements to all the songs!  My kids go to a small charter school and everyone knows Seth.  They all felt that joy watching him perform!  He was amazing!  It gives me glimpses of what is possible.  If he can stand on stage with 500 other kids and sing and dance, anything is possible!  He just does things one beat behind the rest…but he’s doing it!

Being an Autism parent is different from parenting a “typical” kid, but in the end we all want the same things for our children.  We want them to be happy, healthy, and be able to take care of themselves in a world that’s kind of scary sometimes.  We are more alike than some thing.  We just face some different challenges along the way!

What does 40 pounds mean?

Since I’ve moved to Arizona I have lost 40 pounds.  I have to say I think that’s a big deal! (no pun intended)  I was thinking today just what does 40 pounds mean and this is what I’ve come up with.

Now that I’ve lost 40 pounds here are some things I can do, that I couldn’t do weighing 40 pounds more.  I’ll try not to overshare!

Cross my legs like a lady      

I’ve lost enough weight that crossing my legs to sit like a lady is possible.  It’s not overly comfortable, but it never has been.  But I can do it!

Hike 2 miles to the waterfall

White Tank Mountains have a 2 mile trail that 40 pounds ago would have killed me.  But not now!  I can hike there and back and feel good, but not near death!

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Play with my kids

Before I lost 40 pounds it was hard to play with my kids at all.  If we walked to the park I had to stop and rest once I got there.  Now I can play and run around with them a little bit more than before.

Tuck my shirt in

So I don’t do it often, but now I can tuck certain shirts into my jeans (my smaller sized jeans.) and it still looks good.

Ride a bike

I have a bike I bought 3 years ago, and never rode it.  I always told myself I was too fat.  Now I can ride it.  I still have to build my confidence but I can ride it!

Stay awake longer

As much as I love naps, I don’t feel like they are required anymore.  I still nap often, just because I love it, but losing 40 pounds has made naps optional instead of necessary for my body.

Use a regular bathroom stall in public

I promised not to overshare, so I’ll just say this, regular stalls vs disabled stalls.  I don’t need all that extra space anymore to move around.

See the changes in me

I can see visible changes in my body.  My clothes are smaller and my face isn’t nearly as fat (my choice to use that word) and I feel better about myself.

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November 2012                                 October 2014 with my best friend Ruth

 

I still have a long way to go.  This isn’t a race for me.  It’s a long journey that I take a step at a time.  I’ve been off my food choices these last few days.  I’ve not gone crazy, just not been as healthy as I should be.  It’s okay.  I will start again planning my meals and eating better and exercising and I will continue to travel this road.  I’m doing it for so many reasons, but mostly I’m doing it because I deserve to be healthy!

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A work in progress!  Stay tuned for more!!!!!

Christmas is coming

Well it’s that time of year again. Time to start planning for holiday shopping. In our family it’s Christmas shopping. I don’t have my tree up yet. I haven’t decorated yet. But I’m planning to! You see I love Christmas and I love what Christmas means to my faith, but I do not love all the extra stuff that comes with Christmas. Yes, Christmas trees are beautiful, but in my world it’s just another tree in the middle of the room. More clutter than I like. I don’t have many rooms in the house that are clutter free, but my living room is. I like it kept that way! But because my children want one, I will put up a Christmas tree. I will decorate it and I will enjoy it. It will come down the day after! No Humbug here, just a mom that needs a little sanity in her life!

For me the meaning of Christmas is so much more important than presents and trees. The moment in time when God reached down to a fallen world and sent His only Son to be born. God knew in that moment what He was sending his Son for, but He loved us so much that he went through with his plan to send a Savior into a world that was dying. I’m thankful for my Savior and all that God has done in my life. As we go into the holiday season let’s keep in mind the reason for the season. Enjoy the presents and the trees, but never forget about Jesus!

 

Luke 2 New International Version (NIV)

The Birth of Jesus

In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. (This was the first census that took place while[a] Quirinius was governor of Syria.) And everyone went to their own town to register.

So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child.While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them.

And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. 10 But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. 11 Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. 12 This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”

13 Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,

14 “Glory to God in the highest heaven,
    and on earth peace to those on whom his favor rests.”

15 When the angels had left them and gone into heaven, the shepherds said to one another, “Let’s go to Bethlehem and see this thing that has happened, which the Lord has told us about.”

16 So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. 17 When they had seen him, they spread the word concerning what had been told them about this child, 18 and all who heard it were amazed at what the shepherds said to them. 19 But Mary treasured up all these things and pondered them in her heart. 20 The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.

21 On the eighth day, when it was time to circumcise the child, he was named Jesus, the name the angel had given him before he was conceived.

Merry Fitmass

Now ya’ll think I’ve lost my mind! Nope not at all. Do you want to spend another holiday season waiting to make your New Year’s Resolution? Why not start BEFORE the new year? Join me Dec 1-21, 2014 and get in the Fitmass spirit.  21 days before the holidays and you will go into the season looking and feeling great!  It is simple nutrition and simple fitness.  Comment, send me an email, smoke signals, whatever you need to get in touch, but don’t wait!

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New you November!

It’s fast approaching.  It will be here before you know it.  The holiday season is coming up!  So are you going to shop to you drop? Are you going to eat until you explode? or are you going to start November 3 and make new healthy changes that  will help you control your eating habits through the holiday season?

As for me I’m doing the latter!  i have a group I’m starting on Facebook and we’re going to rock this for the holiday season!  Do you want to join me?  I would love to help you make positive changes, develop healthy habits and start an exercise routine.  As I’ve talked about in the past I use Shakeology, and Beachbody fitness programs.  I love them!  I could go on forever about how much I love Shakeology, but I’ll keep it simple.  I love Shakeology because it is helping me become a healthier me!  I’m going to share recipes, healthy eating habits and even some fitness tips.  I really believe in this process and these products and I would love to have you with me.

We are starting November 3rd and we’ll go for 30 days.  I will be with you through Thanksgiving!  Come on you know you want to join me!!!  Leave me a comment and I’ll be in touch with you about the group and Beachbody products!  How amazing is it going to feel when you get through Thanksgiving and you don’t feel awful about your eating habits?  How amazing is it going to feel if you make some changes and lose a few pounds in the next 30 days.  Join me!!!!!  I don’t profess it will be easy, but I will tell you that it’s going to be worth it!  Comment on the post and let me help because a new you in November!

Running

Today I started running.  I downloaded the app Couch to 5K and off I went.  I really didn’t think I would be able to do it.  I figured I’d get a few houses down on my block and I’d be done.  But I kept on going.  I made it all the way around the block.  It took me awhile, and I walked more than I ran, but I completed day one.  I’ve decided since I actually ran today that I am now a runner.  My food today was in good control.

Breakfast: Shakeology

Mid morning: homemade egg and Canadian bacon sandwich, with raspberries.  I did have coffee, and I couldn’t drink it black, so I added half the amount of creamer than I normally do and it was fine.

Lunch: Salad with cheese and dressing, honey crisp apple and peanut butter

Afternoon snack: beef and cheese stick.

Dinner will be leftover veggie soup, corn muffin and salad.  My dad hit the clearance at Safeway today so we have a few odds and ends, but nothing that I will go crazy on.  Hopefully I won’t need a snack before bed, but if so I’ll have some nuts and more water.

Life around here is changing.  I did buy a few small treats for the kids, I mean how can I resist Cheetos in the shapes of bones???(they haven’t even been opened yet)   But for the most part, no junk food was purchased!

As for other parts of life, well it goes on!  The full moon, blood moon, seems to be effecting my kids already crazy sleep patterns., even my dog is acting weird.  It’s a good thing she’s cute! LOL  only kidding!

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The kids are rowdy and loud, but I do love my life!  And now I can say I’m a runner!

Everything is better with Sugar…except me!

I have given up added sugar as of today. Now don’t misunderstand I’m still using products that contain sugar but I’m not adding to it. For example, I’ve ditched the flavored creamers and opted for black coffee instead. I tried Stevia in the coffee and it was a no go, although I like it in tea. Those who know me well will think I’ve lost my mind, but really I’ve found it. My diabetes was out of control. My A1C is 7.9 (YIKES) and it needs to come down…way down! The final straw was when I felt my blood sugar drop and when I tested it was still 140. That is not low blood sugar. My body is so used to being out of control that 140 is low. I knew then and there I had to change my ways. So I’m not adding sugar, I’m not using it to cook with. While I still have prepared spaghetti sauce and other products that contain sugar, I am making changes to get my diabetes under control. My goal is to eliminate sugar all together, but I have to do things in baby steps. So for now I’m eating better, no junk, no soda, and no eating out. I keep trying these same strategies and I’m doing so much better than I was before, but I have to kick it up and really get this under control!

I had my Shakeology today and I’m on track with my other eating, for dinner tonight, on Meatless Monday,  is veggie soup and pimento cheese sandwiches. It’s healthy and no added sugar! So for now, I’ll have to be sweet without sugar!