Friday, March 30, 2012

On Being an Autism Mom: A Post about Grief and Joy

Being an Autism mom means-

-the possibility of a never-empty nest

-watching your child "flunk out of" ballet lessons

-dealing with bullies and their parents

-feeling bypassed by the parents of normal kids

-being the mother of the odd-family-out

-finding kindred spirits in the strangest of places

-learning that age is no barrier to friendship and being grateful for ANYONE who will love your kids along with you

-not being invited to parties

-having no help or support

-not having people over as often as you would like

-spending all your money on doctors and medicine

-never being able to afford to go on vacation (see above)

-used furniture (see above)

-thrift store clothes because, in part, they are already broken in

-acceptance

-patience

-giving up your spontaneous side in favor of much needed routines

-watching the kids grow and develop at their own pace

-letting go of expectations

-fighting envy of "normal" kids' accomplishments and their proud parents

-accepting that some people will never be fashionistas...and being secretly grateful for that fact

-looking back and re-living the "golden days" of motherhood before it all came crashing down...before you KNEW...

-love, joy and hugs from people who, if they were neurotypical, might feel "too old" to want to hug their mom

-seeing a prolonged innocence in your kids due to their developmental delays

-knowing how to stave off a panic attack (theirs, not yours)

-have mad melt down alleviation skillz

-not being afraid of psychotic episodes

-keeping up with four different medicine and bio-medical supplement dispension trays

-last minute phone calls to get meds refilled because juggling all of it seems impossible

-being able to cook gluten free and live to tell about it

-the Gaps diet

-spending a large amount of money on food

-shopping at three or four different stores in order to find the right brands of everything that doesn't contain the garbage we are trying to avoid

-getting unwanted advice that is always kindly meant

-giving unwanted advice that is always kindly meant

-seeing your kids sitting alone during coffee hour...week after week after week

-bonding with other autism families

-offering up this grief to God

-wondering why, what caused this?

-asking "why me?"

-holding your breath and hoping none of your kids' cousins have autism...for their sake

-learning to accept your life as it is and not as you thought it would be

-seeing amazing talents emerge despite the kids' struggles

-"Thy will be done, on earth as it is in heaven"

6 comments:

elizabeth said...

Yeah, this is really hard. Been thinking of you. We sure don't know why this side of things and of time why things are as they are. Lord have mercy on us.

mamajuliana said...

AMEN!...

Our son who is ADHD has just been diagnosed with bi-polar disorder. We just dealt with a panic attack at college yesterday.

One I'd like to add, but I don't want it to sound like I want a pity party.

-wondering why family doesn't call much any more.

We have been dumped by some pretty 'important' family members. You would think after all these years we would be used to it. But it still hurts.

Hey, I am with you on the -have mad melt down alleviation skillz, Boy, have we learned.

If I was closer, I would come give you a hug!

Janelle thegeekywife said...

Hugs.

Any advice you have as far as learning to accept life at it is? I thought that part was striking.

Alana said...

Prayer and surrender...again and again and again and again.

gemma said...

Alana - a friend of ours has a child with autism and he and his wife are very involved with many different groups..one is Autism Awareness and you probably already know all this...but it's all I can do...wish I could do more. I pray for you and admire your strength and faith. You are a wonder.
Autism Awareness is on facebook and may have some helpful bits and pieces.

Tracy said...

I can relate to nearly everything on you list Alana. There are so many of us out there but it sure does feel like we're alone much of the time. Hugs.