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Monday, June 11, 2012

The Forever Diaper Bag-- Repost from Autism Support Network

Hi everyone!!! I have some great things to share with all of you in the next few weeks. I haven't written in quite some time because it's the end of the school year and I am just exhausted!!!

Today I read something on the Autism Support Network that I'd read a while back (way before I even thought of starting this blog). I find it so incredibly accurate in describing our lives as parents/caregivers of kids with ASD. It's interesting because I just watched the movie Autistic-Like: Graham's Story again yesterday (one of my favorites, a MUST SEE! http://www.autisticlike.com/). One of the lines in this movie that hits home the most with me is when Graham's mom, Jenny, says she can't just sit and chat with the other moms at the playground because to her it's critical to facilitate every single social interaction. She describes each of these instances as her "need to save his life." Now, add in heupelmom's description of "The Forever Diaper Bag" and it pretty much sums up our lives. A few posts ago I stated that I'd had to step in and say to a family of a child with ASD that "Parents of kids with ASD have a higher calling. Yes, we DO have to do more than other parents and we DO have to work harder. It's hard but it's just the way it is and we have to step up!" It's nice to hear Graham's parents and read how heupelmom's words totally encompass what I meant.

Luckily for me, I can rely and count on Jesus' words when He said, "Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28 NIV 
I hope you will also find rest in His arms. 
Here is the repost:

The Forever Diaper Bag

By heupelmom in The Autism Rollercoaster on Tuesday, June 15, 2010 6:28 PM

Sometimes I feel like Autism is like a diaper bag that you never get to get rid of.  It is always there.  
 
- You always have to think about how your kiddos will react to a situation before you take them there.
- Make sure you get the vacuuming done while the kids are at school because the noise bothers them.
- Make sure you put the next days' schedule up on the schedule board so it is there when they wake up.
- Explain to the other moms at the gymnastics place why your 4 year old isn't potty trained yet and why he has to turn the lights off and then back on when it is time to leave.
- Have extra meetings with teachers.  Some will understand and some you will have to fight tooth and nail to get the bare minimum of what your child needs.
- Always remember to have drinks and snacks and the required CD for the car to ease transitions.
- Know all of the right brands of foods and where you can get them and don't ever run out or risk your child not eating.
- Figure out whether an issue is behavioral, sensory or autism related and then try 1000 things to try to fix it.
- Worry about when they get invited to birthday parties and worry when they don't get invited to birthday parties.
- Arrange countless therapy appointments and then provide transportation.
- Try to get into their heads to figure out what is in their minds and help them try to express themselves.
- Never ever stop worrying because you know that everything in this difficult world is always just a bit harder on your child.

I sometimes get angry because the mom's of typically developing kids get to "outgrow" the diaper bag and move past stages into new ones.  At some point they get to leave some things behind. I realize that my boys too will outgrow stages and grow into new ones.  They will have successes and failures, but our family will always have that extra "diaper bag" that we will never get to put down.  An extra weight, an extra consideration, an extra burden that we will always have to deal with.  Some days it is light and I almost don't even feel it.  Other days the weight of everything brings me to my knees.

God chose me to mother these kids for a reason and I am thankful every day for that.

But some days I just wish I could put The Forever Diaper Bag down.
 

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