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Sunday, June 22, 2008

F is for FRIENDS, FAMILY & FAITH

When you have a child that has autism, you will need all three of those things in order to survive in life. I love how Jenny McCarthy described in her book, Louder Than Words when someone's child is diagnosed with cancer, they rally around you and grieve with you and cook for you and hold your hand...but when your child is diagnosed with autism...people stop calling you for play dates, dinner and shopping and they avoid you out in public, lose your phone number and they say things like, "she just looks so normal". Yeah, you're right, she DOES look normal, but you aren't with her 24/7 like we are. You aren't there to see the midnight meltdowns and what happens when you feed her food she isn't supposed to have while she is with you (the after effects which are never while she is with you....it's always hours later when it kicks in and usually lasts for DAYS after).

You aren't there when she is on sensory overload kicking and screaming because she wants to wear a dress and there are none clean and nothing else will do and she has verbal barf and looks like Linda Blair from the Exorcist spewing split pea soup. You aren't there to see her cry when she can't make any friends and no one wants to play with her because she is different. You aren't there to see those little things about autism that no one else except her mom, dad and sister know about. That's the part people do not understand. She seems so normal on the outside, doesn't she? That is the part that makes it so difficult for friends and family to understand.

When it comes to friends and family(aka F&F), you have to have a support network of some kind or you will get sucked into the black hole of autism. Autism rules your life and it dictates how every little thing will happen in your daily life. I don't care how good of a dispostition you have, when autism rears it's ugly, ugly head....you better run for the hills or else it will sweep everyone away in it's wake. After a time living like this, it's starts to chip away at your soul...your spirit...your sense of self. You start to lose faith that things are ever going to get better.

Like I said, what families with ASD kids really need in their lives is a great support network. They need people to take one or more of their children overnight so the parents get some together time (soooooo many ASD families end up divorced due to the stress). They need to offer to cook dinner once in awhile for the exhausted moms. They need someone to offer to help them clean and organize their homes (most ASD mommies are too frazzled to organize anything after a time). They need someone to offer to drop by and watch the kids while you run errands for a couple of hours. That's the kind of support you need. What we need is for you to believe us when we say she can't eat wheat and dairy, that we mean it. We need to be trusted that we know our child better than you do and respect our rules when it comes to food. What we need the very most from our F&F's though, is just a shoulder to lean on. ASD parents need to be able to blow off some steam and get out their frustrations (because there are many). I wish the F&F's of ASD families understood these simple gestures. Reaching out to ASD families is all that is needed....for someone to say, "I see you struggling and I am here....what can I do to help"?

Last that brings me to FAITH. Faith is something I have always had until recently. I think that I am so exhausted, so frazzled, so disorganized, so behind, so lost and so empty from autism sucking the life out of me that it's really hard for me see past the mountain of doubt standing before me. I know the way to get the faith hook-up...I just can't seem to get around that dang mountain. When I feel my faith start to slip away, I always begin to isolate myself. I withdraw within. I hide out and feel sorry for myself and wallow in my own self-pity. I hate being there. I hate that I am that person...but that's just how I feel right now. I feel like I have no faith that things will ever get better for us. I feel helpless and alone. But as a parent of an ASD child, I have had to have FAITH that all that I have done is worth it. All the heartache,sleepless nights and all the sadness is worth it. My faith is what keeps me from completely sinking under. Even though at times I feel like I am white knuckling it...I know that if I just hang on...God's going to send someone out to dig me a tunnel so that I can get through that stupid mountain. So to all the ASD parent's out there...hang in there and have FAITH! That mountain will move, eventually......

5 comments:

Heather said...

awe lots of love to you all. :) this is great way to share information.

Heather said...

(hugs) sister.

I agree with pp, great blogging idea!

lonestar818 said...

hi, found your blog on the mom blogs. great post, we have 3 boys with autism so I can relate to the ups and downs...

notjustanylisa said...

lonestar,

thanks for commenting...bless your heart....3 with autism....you are in line for Saint Hood woman! I will be thinking of you. Blessings to you!

redheadskater72 said...

I love the suggestions on how people can help. I don't think most people understand exactly how much we would appreciate having someone cook dinner, do a little bit of cleaning or even run some errands for us.

It would be great if someone could come over and watch the kid(s) out in the backyard for a few hours so we can do whatever.

Little things here and there really do make a big difference.

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