Stella

I was so touched by the responses I received after my last post. A few people emailed me to share their own struggles with their own precious children. Wow! I completely did not expect that response. I had long wanted to write about Mara and I finally did and it felt great. It feels so incredibly awesome to open up about something so personal and have just a few people respond to say that they really get it.

So, now I am struggling with what to write about next. Should I write about Mara’s progress in overcoming her debilitating fear of public bathrooms? Should I write about the two incredible hugs she’s given me in the past few weeks: one right after we came home from the Imagine a Way meeting where we found out they are going to sponsor Mara and the other right after I published my last blog post? She’s always given great hugs, but these two hugs were different and seemed to indicate that she knew something wonderful had just happened. I’ve started to write several times, but I get stuck and wind up starting over. So, I’m going to take a break for a minute and write about Stella.

Stella is 9 months old today and she is an absolute joy. She is starting to really develop her own personality and it is so fun to watch. At her 6 month well check I expressed my concern to the pediatrician about Stella developing autism. He pretty much laughed at me as he watched her chuckle at every face Reese made at her. He said that her interactions with her sister lead him to have no concerns about her. I didn’t even stop for a second, though, to feel relief, because when Mara was 6 months old we had no concerns about her either. She laughed at Reese the exact same way that Stella does now. I have video to prove it. I live in a constant state of worry that we will face the same things with Stella and it sucks. I am pissed at autism for robbing me of the chance to sit back and enjoy my adorable baby. If she waves her hands, I immediately wonder, “is she waving or flapping?” If she doesn’t answer to her name immediately I freak out. I’ve been working with her on clapping hands and she still isn’t doing it. I sit there with her and say, “clap your hands, clap your hands” and I think, “Come on baby, just do it. Clap your hands and then I will know that you don’t have autism.” It is a horrible feeling to have. I haven’t shared this with many people. If I do, I know they will blow me off and say, “she’s fine, don’t worry.” They will be well-intentioned and they will really believe what they say, but I can’t shake the worry because that is the exact.same.thing everyone said about Mara.

our blue-eyed strawberry blonde

What does help is something that another autism mom said when I first expressed this worry to her. She said, “so what if she does have autism?” So I sit back and I think about it and I think, “Would it be so horrible?” The quick answer is yes. It would be horrible. I don’t want another child with autism. Who would? But then I think, “So what if I had 2 children just like Mara?” and then I smile. I can breathe a little easier and worry a little less because Mara is awesome. She is difficult. She hits me and kicks me. She gets so frustrated because she can’t communicate what she wants. She can scream her head off for half an hour or more and sometimes she even hurts herself. But, she hugs like no one else can and her smile is fabulous. She blows us away on a daily basis when we get a glimpse of just how brilliant she is. Yesterday she opened a book that I have read to Reese a hundred times. Mara has never shown the slightest interest in it, but she’s been listening (because like any other autism parent will tell you, eyes are not ears). She opened that darn book to the last page and read the whole thing. I never knew that she was even listening.

It seems that my post about Stella has turned into another post about Mara, but I like it. To write about my fears and share them with others makes them a little less horrible. Thank you all for reading. It means a lot to me to let a few people into our challenging, wonderful world. I hope you’ll come back again and share with me some more about your amazing children and your struggles and triumphs.

Our world
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I’ve been thinking about starting up our blog again for several months.  In those months I’ve thought about what I would say, how I would start, and how I could possibly sum up what has happened in our lives in the past year into one post.  The big news is a diagnosis Mara (our 3 year old) received in December. She was diagnosed with high functioning autism spectrum disorder. Those who know us well know the details of our recent struggles. I’ve wanted to share our story with anyone else who would like to know it. I feel as if I’ve been hiding something, but the truth is that it is so hard to talk about. It’s not because we are ashamed of it, or even so upset about it (anymore). There is just so much to say. For today I’ll just start with these 4 things:

1) Mara is ok.  She is more than ok.  She is beautiful, funny, affectionate and super smart.  We are doing several things to help her and they are indeed helping.  She receives private speech and occupational therapy twice a week and is in preschool in our public school 5 days a week. We have seen some progress.  She is about to start quite a bit of more intensive therapy…more about that in a minute. 

2)I’ve had my ups and downs about how I feel about all of this.  There really is a grieving process when you find out your child has a special need.  I started with denial, then sadness, then anger.  I’d like to think that I’m in the acceptance phase now, but some of those other things come creeping back in now and then.  What I know for sure is this…Mara is not broken.  She is exactly who God created her to be. We just have to find a way to help her communicate better so she can share her unique gifts with the world.  When I was first beginning to worry about Mara, I came across a quote on another blog that has stuck with me: “Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that she is exactly the person she is supposed to be. And that, if you’re lucky, she just might be the teacher who turns you into the person you are supposed to be,” – Joan Ryan, “The Water Giver”.

3)I have just one piece of advice for mothers who find themselves in similar situations…Listen to your heart.  When I first became worried about Mara (October 2010), I KNEW something was off.  I saw her regressing with my own eyes.  I talked to Karl about it, to my family, to the pediatrician and EVERYONE told me I was worrying about nothing.  I did NOT want Mara to have autism, but I knew she did.  I let people tell me I didn’t know what I was talking about and I will forever beat myself up about it.  Mara received her diagnosis in December of 2011. A whole year had passed!  Had I listened to my heart from the beginning, we might be in a different place now.  We might have started the more intensive therapy sooner.  I have to let myself off the hook about this sooner or later, but I just want to shout from the rooftops to all other mothers.  A mother knows her baby best.  Don’t let anyone tell you differently!

4)God is with us in all of this.  A couple months ago I went to confession and while I was there I talked to the priest a bit about what has been going on with our family and Mara’s autism. He had many wise things to say and then he gave me an interesting penance. He told me to pray and to specifically ask God to reveal to me where He is with me in all of this. I did as Father requested. Actually that has been my prayer over and over again, “God, please show me where you are in this!” I have to admit that I felt ridiculous as I said it. I was asking God to give me an obvious sign and I doubted that He would actually answer my prayer.  And then it hit me like a truck. The answer to my prayer. God is showing Himself to me through other people! There have been many instances where I have been overwhelmed by the kindness of others.  My family is willing to drop everything and drive 100 miles to come help me on a bad day.  My friends have watched my children numerous times for appointments and therapy even though I can’t return the favor right now. Complete strangers see me struggling and offer to help. I’ve been struggling for weeks to find a babysitter and it’s tough because someone really has to know how to work with Mara and then, out of the blue, Mara’s teacher offered to babysit for us. And finally, there is an organization called Imagine A Way. It is a group of parents, all who have been personally affected by autism, who created a non-profit organization to assist families in paying for autism therapies. We found out last week that they are going to help us pay for Mara’s therapy! She is going to start receiving 3 days a week of speech and OT instead of 2 and in August she will start 20 hours/week of ABA therapy.  These people are incredible.  I can’t even find words to thank them.  I tried to thank them and the president of the organization replied and said it is their “honor” to help us…to help Mara.  He said, “Together we will get Mara back.”  Every time I think about those words, I cry. 

So, there you have it.  The return of our blog.  I’m going to try to write more and hopefully future posts will be shorter.  Writing is good therapy for me.  I hope that this will help keep our family informed about Mara’s progress.  I hope to write about the other munchkins, too.  And, of course, Karl will write about beer. 

At Long Last

I was looking at the website the other day and realized I hadn’t posted in about 3 years.  I don’t know how that’s possible.  I do know that Drupal was getting outdated and clunky and I didn’t want to mess with it.  That brings us to the new website.  WordPress based this time!

It doesn’t look like much yet, but I’ll be tweaking it to make it our own.  Stay tuned…