Wednesday, May 19, 2010

In the Hands of God

Whenever I tell people that three out of four of my kids have been diagnosed to be on the autistic spectrum, I always get the same reaction: Sympathy, a shaking head, and an "I don't know how you do it." or a "You have so much on your plate." comment.

But really, around here it is just the way life is, and so I don't know any different. It just IS. I'm used to my kids, and I love my kids and sometimes I forget how different they are. (Now those early years, before any diagnoses were to be had...those were TRULY DIFFICULT.) OK, it is hard sometimes. I won't say that it's not. And I am sad a good bit. I can't say I'm not. But there is joy, too.

We deal with the difficulties at Church, for instance. There's an article in the March Word Magazine about how Orthodox worship lends itself to being appealing to someone on the autistic spectrum. Very charming. Except it's also been said that kid son the spectrum are like snowflakes: no two are the same, except that they melt. Anything written about one autistic kid is written about one autistic kid. Sometiems.

Meltdowns certainly were a large part of my life for many years. Now that they are older my kids don't "melt down" the same way a toddler does (ahem...for the most part), but we are still constrained by the utter exhaustion being amongst people can cause someone on the spectrum. You won't often find our family staying very long for coffee hour. Because of our special food challenges, you'll likely never find our family at any of the parish wide sit down dinners and even pot luck dinners (where I can at least bring one dish that will be safe for certain ones to eat) can be a challenge.

I daily face many small reminders that my kids do face special challenges. B and I were at knitting group last night, at Panera. More than once a stranger stopped to chat with us about our knitting, and at least one lady got an unexpected dose of a one-on-one conversation with an obviously autistic person, when my daughter answered her in her own unique, blunt and rather autie fashion. After the lady went her way, I commented that "she'd been Bethanied" and Bethany had a really good laugh that I'd "verbed her". We all laughed together. It's good to find the lighter moments.

I sometimes wonder what it's like to parent "normal" kids who don't have special needs. It seems like those families have fewer constraints and more options available to them. On the other hand, I'm really GLAD my kids are who they are. I try to stay in the present and not worry about the future. It will take care of itself and doors will open that need to open. God is in control.

I think the biggest thing that a mother (and a father) with special needs kids needs is friendship and support. I value my friends and family members who support me, and who accept my kids just as they are. It's good to "get away" sometimes, and have an adult coversation or some fun activity like "girls night out". My husband and I work hard to carve out plenty of date nights for ourselves, now that the kids are old enough to "babysit" themselves. Believe me, we went for years and years and years when the kids were wee without ANY dates, so this is important and a good season to be in.

The biggest challenge I face in parenting kids that are on the autistic spectrum is my urge to "fix them" or to mold them into behavior that is as close as possible to neurotypical behavior. On the one hand they do need to learn what societal expectations are, but on the other hand there's a lot more latitude for uniqueness and what might be termed "weird" that a person can be and explore without actually behaving in inappropriate ways. I need to learn to give them that latitude to let them be themselves.

My biggest dream for my kids is that they grow up to love God above all else, and to love their neighbor as themselves. Beyond that, I always try to remember that I did not create these unique and special persons, and that God is in control of their destinies, and loves them beyond measure, even more than I do. In the hands of God, they will be just fine.

7 comments:

Michelle M. said...

I love this post, Alana, and I love your family. Your children are always such a delight when we have gotten together or I have stayed in your home. I love how peaceful your home feels and how welcoming your entire family is to us.

It is so nice to read such a positive take on this topic. Thank you for sharing your heart.

Tabitha said...

I want to echo Michelle's post. Every member of my family enjoyed our visit to your apartment. I especially was struck by what a pleasure it was to discuss B and M's hobbies and interests, they are growing up beautifully. Your younger two were so welcoming of my children and they played and hung out together so joyously, even J complained about leaving.

For my husband and I, it was a safe and friendly environment in which we could enjoy recouping from the rigors of the day and be refreshed for the journey home in the presence of old friends who accept us as we are. You guys are clearly doing so many things right. Your home and family have a beautiful "soul".

elizabeth said...

Beautiful; I can sense it is written with hope and peace that is of God.

Thinking of you often my dear friend.

Anonymous said...

Where is this 'normal' family? In the family of Dick and Jane and Sally and Puff and Spot?

When I was a kid in a very large family in a remote area of the country where all the schoolbooks were stamped Alaska Territorial Schools. Grandmother, who was a primary-grade schoolteacher for many, many years (really just started with being a high school graduate in one-room school) sent us reading books from when she had first started teaching. We kids tried to imagine Sally with her pert straw hat, fashionable wool coat and patent leather Mary Janes overnight satchel in hand, boarding a train to visit Aunt Betsy in Chicago at Christmas.

That was then, our own family kingdom in the boondocks.

The reality now is that my family lives in a suburban area of the mid-eastern US where we still have to find ways to connect to others in the human experience as we appreciate our own uniqueness. Belonging to a parish where there are kindred kindly spirits says a lot about what we believe to our children. For after all, we as parents were entrusted with the future and we do the best we can.

Thanks for your reflections!

Blessed Rain said...

I really understand what you say about no to are the same. My husband taught severely autistic children and when my best friends daughter was diagnosed with mild autism he was able to help her take her first steps. Now she has her own blog and is an active advocate for better health care and coverage for autism.

God bless you and yours.

her link
http://speakingonthespectrum.blogspot.com/

wendylf said...

Thanks for the reminder to love them as they are...I'll apply it to my son who's on the spectrum. Oh yeah, I need to apply it to my other kids, the ones who are "supposed" to be "normal." Whatever that is! :) (A Christian comedian said once, that "normal" is a setting on the dryer, we love that around here!)

Thanks for reminding me to just love them and remember, once again, that they are in the LORD's hands and He loves them (& me) much more than I can comprehend!

Blessings on you and yours, sister.
Wendy

Helen said...

I once saw a book title: On Being Normal and Other Disorders.

From what you write, Alana, your kids seem like angels. And angels don't like to talk too much, especially not to very negative or agressive people. Thus I sincerely doubt there is such a thing as mild autism. Such kids are simply angels.

Or some call them indigo children.

Also I think you and your husband make great parents! That's why you have been given 4 angels!

Take care
Helena