Rearranging the Puzzle {Autism Awareness}

Looking at a puzzle, there’s only one way it fits together. If there’s a missing piece, it’s incomplete, and if you switch all the pieces around, it doesn’t even make sense.
Welcome to the world of ‘the box.’

Let me invite you to join our world; we live in a triangle, or octagon…or any fun shape really. We are the polar opposite of ‘the box.’

I used to live in that box though. I did things in life considered “normal” by most standards. Then one day, this sweet baby girl joined our world and began to change it all. I was an over-protective, slightly high strung first time mom. {You know, the kind that fusses at people because they are walking too loud when the baby is sleeping. True story. I actually did that.} Being very much by the book, I nursed her as much as possible, and she didn’t get a dab of rice cereal until all the experts said it was time.

I followed all the rules. I also made sure she received all vaccinations on time. I would get that little form that would list the normal reactions to the shots, yet Maddie always had a very, very high fever after. It never failed, after her inoculation, I would end up taking her to the ER that night with a minimum of 103 fever. After her 12 month shots {and a 104 fever}, the biggest decline in her happened. My girl retracted and autism took over. She could no longer play patty cake, peek-a-boo, or give high fives. She wouldn’t look at me, she wouldn’t answer to her name, and as the days and weeks went by, all she would do is scream and cause herself harm by biting herself and running herself into the walls.

I felt completely inadequate. I envisioned myself as a perfect, by the book mom. I was following the books, but not getting the right results! What was going on?

During all of this, I gave birth to Maddie’s brother, John Ryan. {Irish twins – 14 months apart…and yes, I am nuts.} I had a million justifications for her non-typical behavior, but I finally had to face the reality that something was not right with my sweet girl. About the time I had mustered up the courage to start the doctor’s appointments and waiting lists, I saw a commercial for Autism Speaks. It listed the classic red flags, and I could check every one of them off. I remember sinking to the ground, calling a friend, and putting her between a rock and a hard place by directly asking her if she thought Maddie had Autism. {Angie, my sweet friend, is a complete overachiever and holds 3 bachelor’s degrees in special education, early childhood education, and something else equally impressive.} She said she strongly believed she did. Following the immediate release of the Mississippi River from my eye balls, she said she was packing up her kids, getting a pizza, and coming over to cry. And we did.

After that, it was time to face the facts and hit this thing head on. The first few years of Autism are a blur – its doctor appointments, meltdowns, evaluations, meltdowns, special meetings, meltdowns, diet changes, therapy, therapy, and more therapy…with some meltdowns. Our Autism journey has been 3 steps forward 2 steps back continuously.

Now, while I could tell you some pretty darn good stories of how hard our life has been, how it can be virtually impossible to do “normal” things {seriously – imagine the worst meltdown your kiddo has had at the grocery store and multiply that by 1,547; we are like the freight train of disaster rolling up to Kroger}, and focus on what we are missing out on – I choose to do the complete opposite. {But, if you really want some good stories – I’m your girl. I couldn’t make this stuff up…slightly humorous to think about now; I assure you much less humorous at the time.}

Let me just give you a little list of some awesome positives ::

• Maddie has NO idea who Justin Beiber is
• Maddie has NO idea who Miley Cyrus is
• Maddie has NO idea who Lindsay Lohan is

…see where I’m going with this?!

Seriously though, there are some things that are such a blessing about Autism. Maddie has the ability to show pure joy. When she laughs, it’s pure and innocent and perfect. She has no sense of time; she’s not worried about tomorrow. She isn’t distracted about a deadline coming up, how much she has to do, or the latest style of shoes. She truly lives in the ‘now.’ Maddie doesn’t sin as we do. She doesn’t lie, cheat, or steal. She isn’t interested in material things – unless it’s a unicorn dream light, and then all bets are off. When Maddie lets you in her world, she will change your heart. For a little girl with few words, she speaks volumes.

The popular catch phrase “find the missing piece” makes sense. However, I would like to offer an alternative. I feel like if we’re trying to find something missing, that means these kids are lacking and not whole. I would like to rearrange the puzzle instead. I have learned it’s not just about “fixing” Maddie. I needed fixing too. My 2 boys needed fixing. My whole family needed fixing. This little girl isn’t just going to fit in the box. We must rearrange our box – to a triangle, octagon, or any other shape because we strive to fit in her world and make her world better.

At the end of the day, Maddie has challenges and frustrations. Don’t get me wrong – I would do anything to take those away, to stop future tears due to an over-stimulating environment and to stop random grown adults in public who stop, stare, and judge my child who’s having a complete meltdown. {Oh, rest easy my friends – I have NO problem putting them in their place…a special needs mom is the worst kind of momma bear I am convinced.} But at the end of the day, my child is perfect. God gave her to me with a purpose, not as a mistake. Maddie may have Autism, but Autism does not have her.

To my fellow moms on this journey, I offer you hope. Maddie has been on this road for 6 years; she has recently turned 8 years old. Some of you are just starting and some are seasoned veterans. This is a journey few understand until they are in waist deep, but it connects these special families together as one. The days are long. The tears are many. The heartbreak is real, but the joy that fills it is worth it all. There are good days and there are days that I might hit every emotional high and low imaginable repeatedly, but day by day we make it.

I am so thankful for this little girl who has reminded me to continue to fix myself, to take us out of the box and look at life with new eyes.

I love you sweet Maddie-bear. Keep fighting, keep loving, and keep being you!

In honor of World Autism Awareness Day, we are spreading the word about ASD and how it affects the families in our very own community.  Maddison’s story is just one of many that we will be sharing, and we hope you will join us as real local moms open up and tell their stories all throughout the day.  To read more, please click here.

[hr] About Steffani E.

Steffani is mom to three beautiful kids. Her oldest, Maddison {8} was diagnosed with moderate-severe Autism before her 2nd birthday. She also has two boys, John Ryan {7} and Luke {2}. Steffani is grateful to be a stay at home mom being very active in her “triangle” lifestyle. Steffani holds a Bachelor of Science in Psychology. She is co-founder of Houston Run for the Fallen and has volunteered many hours to great organizations such as Marine Corps League, Toys for Tots, and the Cpl John Stalvey Foundation while always staying active in the school district her kids attend.