Autism, Motherhood

The A Word

My daughter has autism. Or she is autistic. I’m really not sure which way I like to say it yet.  I’ve only known for a month and the words still feel heavy and foreign in my mouth, yet familiar because really I’ve know for the last two years and seven months since she’s been born. So I guess that makes me a special needs mom, which is also a foreign concept that leaves me confused about how we are here because I don’t remember signing up for this. Or being prepared for this. Or wanting this, but I suppose it’s not really a thing anyone wants.

Level 1 Autism with no cognitive delays was the official diagnosis, which really just means she’s high functioning. I guess I’m supposed to take comfort in the fact that she is high functioning, and I do, some. If this is the struggle, pain, and helplessness of mild autism surely I am not cut out to mother a child with severe autism. That is a life I could not even fathom and have nothing but the utmost respect for.  But, the fact that it could always be worse is rarely comforting.

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We’re still in the process of determining next steps, both with therapy and our lives. It’s not something I want to hide. It’s not something we really could hide. Isla is a vibrant, lively, fun- loving girl, but she’s quirky, no doubt about it.

What I’m dreading and avoiding is the telling. I want people to just know without me making a formal announcement.   A social media announcement seems so attention seeking, yet also the most concise way to get the information to family and close friends. I also don’t want to go on the Autism Tour telling everyone we know in person. I know people don’t know what to say because I don’t know what to say and I don’t want to have that conversation umpteen times.

She’s still the same girl she always was and so now the limbo of not treating her differently, while also treating her differently in every way begins. How do you make exceptions without making a fuss?  I guess it is really more about training us to function in her world rather than the other way around.

The biggest challenge I see as her mom is to be her advocate without becoming Autism Mom. I don’t want this diagnosis to define our family, but I also want to champion her cause. I don’t want it to dominate every conversation we have in our house, but in reality it has since we brought her home. Now it just has a name instead of this weird tense, helpless energy.

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I’m optimistic about what is ahead.  I mean, what other choice is there?  Now we know for sure what we’re dealing with and I’ve heard nothing but positive things about the therapy options, especially for high functioning kids.

In some ways I feel vindicated.  I always felt like I had to work a hell of a lot harder to be Isla’s mom than other moms I knew and now I can say for sure that I was (and do).

I can honestly say that parenting a child with special needs before they are diagnosed with special needs is the hardest thing I’ve ever done, so life from here on out should pale in comparison.  While I don’t doubt that there are still tough days ahead of us, I have to believe that our toughest days are behind us, because the last year and a half have been filled with some tough, tough days.

She’s still the same girl we always had, but now we will all get a little more help and this mama is welcoming it with open arms.

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13 Comment

  1. Reply
    Karen Calkins
    June 21, 2017 at 8:41 am

    Such a beautiful piece of writing in “The A Word.” It’s a fitting way to share the journey with Isla: new writing, new diagnosis, new friends reading your work. And yet: the same: “the same girl we always had, but now we will all get a little more help.” And if you need some more, this mama is offering up🙋🏼. 👈🏼And ending in a preposition. And Love.❤

    1. Heather
      June 22, 2017 at 3:58 pm

      Thank you, Karen! I’m not usually one to ask for help, but I guess that’s the lesson to be learned here, right?

  2. Reply
    Heather
    June 21, 2017 at 10:49 am

    Oh Heather, how I love this honest, open, raw writing!!!! I love this with all my hear for SO many reasons:
    I love you, my nephew & your babies even from 2000 miles away!
    I have worked on an Autism Unit for the last 2 years and for 2 years before that worked with Autistic children, they are my WHOLE HEART!
    “High” functioning versus “low” they ARE your same babies, great analogy!

    I am here if you ever need to vent, call, ask questions or just need to be listened to!!
    I got to see you hands on with your beautiful babies in the Fall, YOU ARE AN AMAZING mommy!

    Yes, the struggle is REAL but you have a great opportunity to give her what she needs YOUR way! If she has an IEP when school starts YOU are her biggest advocate AND GUESS WHAT YOU DO CALL THE SHOTS AND GET TO MAKE DECISIONS, YOU ARE HER VOICE! Don’t let ANYONE tell you different!

    We love you all, please know that I am here for you!!

  3. Reply
    Mady Wulff
    June 21, 2017 at 5:58 pm

    Love every part of this. The fact that you wrote it with such real emotions on how difficult this really is, but at the same time the relief to know that she will need more than the average child and she deserves a little more patience from everyone around her! Hugs sent your way!

    1. Heather
      June 22, 2017 at 4:01 pm

      Hugs back to you guys! Isla is lucky to be surrounded by so many supportive friends!

  4. Reply
    Katie McTaggart
    June 21, 2017 at 8:30 pm

    Heather, I’m not sure where to even begin. It’s like joining a fraternity or sorority that you didn’t pledge. Tom and I were told by a social worker the day we took Stephanie home from the hospital (apparently it was required that we meet with a social worker before we could take her home) and she told us we would become experts on Down syndrome! Yeah that’s what we wanted to be…not! Whether you want it to or not, it will change who you are, change the kind of parents you are and change Nolan and help mold him into the person he will become, which will not necessarily be negative. They say the divorce rate is higher in couples who have a child with special needs….we were determined this wouldn’t happen to us, we just celebrated our 40th wedding anniversary so you CAN beat the odds. Make your marriage a priority and together you can be successful. You can have a family and not have the diagnosis define the family, but, like it or not, the diagnosis often takes priority and you don’t always get to choose when. You and AJ are both smart and tough, you are great parents and this will make you even better parents. In 30 years you will realize that not only was all the hard work worth it but that the situation has become the glue to hold the family together. I completely understand not wanting to do the “telling,” over and over again. I’ve been there and done that and it is so heart wrenching. The people who don’t know what to say usually say the dumbest things and it often makes you feel worse. My favorite one is, “God only gives these babies to special parents.” Ha! We knew he made a huge mistake with us! The best advice I can offier as a survival skill is to keep your sense of humor, even when your frustration and exhaustion is getting to you. Laughter truly is the best medicine. Hang in there, we are always here if you need a shoulder, someone to commiserate with, someone to make you a margarita or someone to make you laugh! Love to all of you!

    1. Heather
      June 22, 2017 at 4:02 pm

      Thank you! We definitely don’t feel like the extra special parents. Most days we’re just trying to be decent parents! We appreciate all your support and unique understanding.

  5. Reply
    Pam Powell
    June 21, 2017 at 9:19 pm

    Beautifully written! So glad that you found the answers you have been searching for. I’m sure ur wasn’t the answer you wanted, but now you can begin to move through the process. Praying for you to get the guidance and help that you need. Beautiful Isla, along with you and AJ, will be our prayers.
    Hugs from the Powell family!

    1. Heather
      June 22, 2017 at 4:03 pm

      Thank you, Pam!

  6. Reply
    Heather
    June 22, 2017 at 4:00 pm

    Thanks for the reminder that we know best. It’s easy to lose sight of that after listening to all the “experts”. We appreciate your love and support!

  7. Reply
    Jenn
    June 26, 2017 at 2:18 pm

    Big hugs Heather. I get it. “Welcome to Holland” may not totally “apply” to my motherhood journey and yet it totally does in many ways. Parenting a kid with different needs is an all encompassing experience. Sometimes it is nice to have more of a road map. I hope the diagnosis differs that for your family!

  8. Reply
    Jenn
    June 26, 2017 at 2:19 pm

    Big hugs Heather. I get it. “Welcome to Holland” may not totally “apply” to my motherhood journey and yet it totally does in many ways. Parenting a kid with different needs is an all encompassing experience. Sometimes it is nice to have more of a road map. I hope the diagnosis offers that for your family!

    1. Heather
      July 10, 2017 at 11:09 am

      Thanks Jen!

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