Monday, July 16, 2007

Dealing with autism: A mom who gives them something to think about

About a decade ago or so, my husband and I stepped trepidatiously into the land of infertility.

We'd been married about five years when we decide to try to conceive. This was, actually, a master plan. While my husband and I were still dating I went to my friend Julie's sister's wedding shower and she shared her master plan for marriage. I thought Holly was about as cool as it got, so I paid attention to every word she said, and logged it in my head like gold.

Later, my husband liked the five year plan: play for five, then settle down.

And it's true: for five years we played...and played...and played.

One day, it felt like time.

Let's have a baby.

Only it didn't at all work out that way. I've gone through it before, the infertility saga, a la Part 1, Part 2, and Part 3. The latest installment I haven't shared because...well, I am still processing. I want to, though, because sharing is what got me through infertility, and I feel like sharing might help someone else. So I'm working my way up to it.

But at the beginning, I was scared, ashamed, overwhelmed, confused. Oh the jokes about how we must not be doing it right abounded. Ha freaking ha. Nobody I knew dealt with an inability to conceive. My sister got pregnant simply by thinking about it and it seemed everybody I knew was the same. Where could I turn?

At the time, a newish Web site called iVillage was just gaining momentum. They had acquired a site called ParentsPlace which hosted a fantastic forum for people trying to conceive and those having trouble conceiving. A lot of us didn't admit, yet, to infertility. I was adopted by twin sisters and introduced to their circle, who welcomed me with open arms. Eventually, I became a board leader, and even more eventually, I moved on to the Infertility Forum, where a sadly large number of my new friends still were.

We were simultaneously happy to be with one another even while we grieved at multiple failures and losses. A grief cycle compressed into 30 days. You live that way. For years. Talk about PTSD.

The upside is that a number of us became close and a decade later are still good friends. In some way, we have all created families. Two remained childfree, not by choice, but by chance, and have moved forward. Several adopted. Others of us managed to conceive and make it to a live birth. When you go through infertility, you learn two lines don't make a baby.

The other thing that infertility teaches you is that nothing is a sure thing and there are no happily ever afters. Those of us who bonded as Bitter Infertile Women knew that life doesn't always go as planned, and you have to make a way within it anyway. We know you have to take your happy times and enjoy them, and deal with the rest.

One mom, a good friend, one who has been there through thick and thin, has proved that and more.

When her precious, wanted more than you can describe son finally arrived, we all exclaimed over his beauty. He is seriously one of the most beautiful children you have ever seen. And smart, too. At a get-together one time, her son wowed Patience with his ability to sit at the window and count cars. Patience, a little younger, was still trying to figure out colors, and this kid was using addition to quickly figure out a sum of vehicles.

"I like Elmo," Patience said.

"That makes 22!" M cried triumphantly. Patience looked impressed.

Still, set them side by side, and something was different, beyond personalities.

Before M was even 2, my friend began wondering aloud, "Is this normal?"

We all went back and forth between, "kids are so different" and "follow your gut."

She did. And it wasn't too much longer (in my time, time outside the testing track) that she got a Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) diagnosis. In layman's terms, that's autism, high functioning autism. It's a spectrum, you know.

She hit the ground running, gathering treatments and information like a pro. We all said, "He's so lucky to have a mom like you!"

She said, "What do you mean? I'm his mom! It's my job!"

But we all knew she was extraordinary.

That's why, when one day she was saying, "I'm tired of other parents not getting it. Telling me my son needs discipline, telling me how to parent, acting like we have some communicable disease..." I told her, "You ought to write a book."

And do you know...she did.

She wrote an awesome book. In fact, it was so great, I offered to publish it.

Now, that book---a moving story about a boy with autism, told from his sister's point of view, and full of real information about autism, including a resource section in the back---is out.

And she started a blog.

She just began, it's new. But she's chronicling---as I have long encouraged her to do, because her writing is fresh, honest, true and emotional, even if she thinks it's not good, it is---her journey into autism. Edited to say, no, actually, it's about their journey through and beyond autism.

If you know anyone who is touched by autism---and seriously, most of us do know more than one---and even if you don't, check out her blog.

And if you want, buy her book.

We can all talk about motherhood as we wish. It is a different experience for each of us.

I have to say, though, in all honesty, whenever I get too far into my own case of pity---replete with Whine, Cheese, and Violins---I remember how Gina is as a mom. In my lowest time, when I was worried about moving from one child to two, she donated countless hours of friendly shoulder and advice.

She is practical, on top of it, creative, remembers to laugh, occasionally tired and frustrated, but at the end of the day, loving. Her kids know they are loved.

She's a mom. And she gives us all a lot to think about.

Also, if I may be so bold, here are some other wonderful old pals (just a few who happen to blog):

Syd at Forever Young

Angela White, J.D., breastfeeding counselor at Breastfeeding 1-2-3

Mamacate, whose description is so rockin' I have to share it:
A blog to serve the needs of the infertile lesbian fiber arts breastfeeding parents of twins community, particularly those who are left-leaning democrats employed in research and education. Don't all comment at once, we don't want to crash the server.

Are you even close to that cool?

And who says online friendships aren't real!

copyright 2007 Julie Pippert

18 comments:

carrie said...
This comment has been removed by the author.
carrie said...

She sounds like an amazing woman!

And you too, for seeing her strengths!

Carrie

Snoskred said...

Thanks for writing about this, Julie. My nephew is autistic, so I'm very interested in that blog.. adding it to the reader.. :)

Christine said...

The book sounds great. And, yes, so many people freak out even in this day and age about autism. she sounds like a wonderful lady who has a good friend in you.

Emily said...

This is my favorite of all your posts. I mean it!

Kyla said...

I'll definitely check it out.

Mary-LUE said...

I'm excited to hear how things go with the book. I checked out Gina's blog, too. I think it is going to be great. I've been reading Whitterer on Autism, a woman's blog about life with her children, two with autism and two without it. It is truly fascinating.

slouching mom said...

Thanks for the awesome links, Julie!

jen said...

she sounds incredible. thank you for sharing her. and you. and yes, this is so very real.

thailandchani said...

Great links! Autism is interesting, the perceptual differences. I don't recall the name of the woman who wrote a book about it from an autistic person's perspective, only that her first name is Temple.

Interesting stuff!


Peace,

~Chani

Magpie said...

You are cool. And, I'm not sure why, but I never knew about your infertility history - I plan to go read those posts later.

mayberry said...

Temple Grandin is the woman Chani is referring to--haven't read her books, but have heard her interviewed and she is fascinating.

I love that you and your friend worked together on such a meaningful project!

kaliroz said...

Oh, Julie, this is great.

I did a story a while back about an art program for adults on the autism spectrum. I had the chance to talk with one of the mothers and, in her, I found this patience and kindness I feel I sometimes lack. And the way she interacted with her, now adult, child was beautiful to watch.

I'll have to check that blog out.

Magpie said...

PS - In a roundabout way, you inspired me to finally finish a post I wrote about infertility.

PPS - You published the book??

flutter said...

The more I get to know of you, the more I adore you. This is very cool and she impresses the heck out of me

painted maypole said...

I am off to check out the blog about infertible lesbian fiber art breastfeeding parents of twins... because even if I am not as cool as that, I am glad you are so cool as to link to them!

mpearl said...

The more I read your blog the more impressed I become. You constantly encourage me to think. I have recently started my own blog to get myself writing again. My niece is autistic but very intelligent. Her mother is one of my heroes. My niece is the same age as my eldest so it has been hard. She is a sweet angel who just relates and thinks things through a little different. I love to hear other people who know what incredible people these children are. Thanks for the encouraging post and link.

liv said...

Thanks for this post. PDD-NOS is something that is hard for a lot of people to understand. It is hard for moms of PDD kids to fit into traditional ASD support groups because most times our kids do not meet the "classic" (whatever that is) diagnostic cues of Autism. Our kids are still different, need different paths to learning, and are misunderstood often because of their varied sets of social limitations. My greatest hope is that parents of neurologically typical children will bear in mind that those who seem quirky, act out, or behave differently are not "bad" or "spoiled" or "unmanageable" with parents of the same ilk. These children try, stumble, succeed, sometimes fail, and try again. Every time they fall, we mothers have a heart wound. And each time there is a success----an explosion of joy.

namaste, liv