The Very Last Costume.......

Well, Parenting Magazine still hasn't called to interview me for Mom of the Year. I guess they found out that last year I waited until the last minute to order tickets to Madeline's dance recital and they were sold out. Luckily, I did end up getting seats and all was well - Madeline was never the wiser. 

I mean as parents we all make those "I messed up but I fixed it before the kid even got a sniff of what was going on" mistakes. The broken trophy that was quickly replaced while at school. The time you ate all of the Halloween candy so you had to run to the grocery store. You forgot the team snack and booked it to get those oranges. So yeah, those are moments you messed up, but at the end of the day are able to put that tally in your "mom win" column.

BUT

then there are those mistakes where there is no rock you can hide under and you are completely exposed to the fact that you have no idea what you are even doing as a parent. I mean, wasn't it yesterday my mom was the one taking care of my life's every detail? Now, poof! It's suddenly my turn. 

It was Madeline's dance class. (What's up with me and dance?) It was the class before Halloween and the kids were encouraged to dress up. Madeline has dance on Wednesday and that particular day called for the kids to come to class dressed up all Wacky. 

QUICK AUTISM NOTE: Madeline's idea of "wacky" is wearing a slightly different shade of pink leggings that somewhat clashes with the other shade of pink that is on her shirt. No wacky hair, no crazy mix-match crazy clothes. To her it makes absolutely no sense. Everything has its place. 

Ok - back to the story.  I get to dance early and attempt to make her wacky.  I was even going to have her wear her Ninja Turtle Leo mask. BUT  I forgot it at home. So I tried to compensate by getting her into the wacky theme. Again, a regular pony tail and some pink leggings that clashed with the red flowers on her shirt were the only things that would do. We are finished and I get her to her volunteer and up the stairs they go. I was going to head to Costco while she was in dance and get her a full Ninja Turtle costume, when I came in contact with another autism mom and started flapping my gums. About 20 minutes later, I hear this girl throwing a fit.... it was Madeline. Apparently, even thought it was wacky day, everyone wore their costume and got a turn to show them off. Well, Madeline wasn't wearing hers (remember, I forgot her mask?) She was beside herself. Those "things aren't exactly perfect and going according to plan" tantrums aren't pretty. I told her that if she calmed down, I would go to the store and get her costume. 

I swooped up Norah, ran to my car, strapped her in, and drove to Costco, because I remember they had several Ninja Turtle costumes. We get out, show the lady our card and race to the costumes, where there was ONLY ONE Ninja Turtle costume left in the entire warehouse.... AND IT WAS HER SIZE!!! Unfortunately it was missing the shell part, but I had no time to bargain with the cashier. I gladly paid and went on my way. But I was no fool. I took the packaging with the picture of the complete costume and threw that puppy in the trash! No way I was letting her see a piece was missing. I made it back to dance class with 5 minutes to spare. Madeline was back downstairs upset, but I raced in, put on her costume, and all was right with the world. She got 5 minutes of dancing in her costume. 

At the end of the day my nerves were fried, but I went to bed with a tally in my "mom win" column. 

Family Rules

One of the best decisions we have made thus far as parents (there are so few, when we get something right, I blog about it)  is displaying Family Rules in our home. I usually don't copy other people's rules, but I saw a list on Pinterest that really resonated with our family. We have them posted in the foyer/entrance area.

Don't they look great? My mom found a lady who did the whole thing. It really blends with our home decor, which is exactly what I wanted. But if we're not careful, those beautiful words can become merely a decoration instead of the basis for how our household functions. 

Each time Madeline or Norah breaks a rule, we have them tell us which rule was broken and apologize. It has been so neat to see how in just a short period of time they have, not only memorized each one, but know what number corresponds to each rule. The other day Norah got her stool out to try and reach something on the counter. I walked up to her and asked "What does rule 6 say?" And she immediately said "Ask permission." I was then able to correct the behavior. The same is true for Madeline. Regulating emotions is a hard task for my child with autism. She can tend to sound rude and forceful, so rule #3 - Use kind words in a kind voice, has been one we are constantly having to reinforce. 

As parents, we are also learning that these are FAMILY rules. Not only do the children have to obey them but we, as the parents, have to obey them as well. The other day, I got upset with Norah because she had a tad bit of attitude in her voice. So, what did I do? I yelled .... USE KIND WORDS IN A KIND VOICE!!!! Ya'll. I sure did. I then had to apologize for not only yelling at her, but also not using kind words in a kind voice. I was able to tell her I was wrong and implement rule #6 - ask for forgiveness.  It's a work in progress, but I'm so thankful we are laying the foundation for how we want to raise our girls. 

Autism Is....

So I'm sitting here at the computer listening to Mike read bedtime stories to Madeline and he is frequently interrupted because he's not pronouncing each word distinctly enough.

I'm trying not to laugh because she's insistent and he's in there trying to pronounce each word to perfection to move the process along so we can go to sleep.


SOOOOO every now and I will have a short post called "Autism is...." and list something random that is going on at our house. The same will be true for ADHD. You never know what interesting things you'll hear about.

For tonight?

Autism is....

pronunciation is key. Each word must be spoken to perfection. She's listening....

The Family Vacation - It's All About Perspective

Besides Christmas, it's the most wonderful time of year - the family vacation. We do not take our yearly pilgrimage to the land of sand and sea until October, so after seeing everyone else's summer pictures, we are ready to GO! And everyone else's pictures show matching outfits, splashing water with smiles and giggles, everyone enjoying all of the great food the gulf has to offer at restaurants where the kids are all behaving. Yeah, that's what the pictures show. So when I look at those, I think yeah... vacation.... ahhhhhhh life is good.

But, ya'll, it's the same old thing year, after year, after year. The thrill of vacation excitement is quickly squashed by the reality of one thing: that's not our reality. And quite frankly, I bet that's not most people's reality. Pictures are funny things, huh? But every year, I set myself up to have these expectations of me relaxing and me doing what I want to do. I spent a lot of vacations not having the best time, because my expectations were never met.

See, I was forgetting one little word in the whole family vacation thing..... FAMILY!

A family vacation means living out your life together in a different location with better views and food. The same baggage is there because we are all imperfect people, and no amount of amazing gulf views and all-you-can-eat seafood buffets is going to change that.

This realization didn't hit me until we were about 4 days into our vacation. I was laying in a blanket with my girls on our beach house deck one night. The stars were so bright and beautiful. I listened at Madeline described them to me through her eyes...

We see the stars at night, but they wear camouflage during the day like Gekko from PJ Masks. 

And she kept describing the sky and was so excited to see each and every one. In that moment God gave me this small revelation: this is family vacation - being with and enjoying my family. Autism and ADHD make vacation more difficult and less relaxing, but instead of focusing on that - God gave me a moment into Madeline's inquisitive little mind and how she sees the world. I hate it when I take those moments for granted, and I'm thankful I have that sweet memory.

So, yes.......

• Norah peed at midnight, then woke up at 4am crying because she didn't like the new panties I put on her.... they weren't pink.
• Madeline didn't go to sleep until 2 am the first night and never recovered, so we had 2 days of complete meltdowns.
• Both of my children made dinner time quite the "experience." I believe there were endless screams over not getting a certain pink plate?
• Autism and ADHD still vacationed with us - they don't take breaks.
• Alcohol and coffee were both consumed before noon. (Hey, it's vacation... right?)

But........

• Norah overcame her fear of the ocean, tackling those killer gulf waves. 
• Madeline was able to swim in the pool and dive for toys.
• I was able to sit at the dinner table every.single.night with my family. 
• I was able to watch the sunrise and sunset with my 2 girls each and everyday.
• I learned more and more about my children's little personalities. 
• I got to sit and watch the waves crash while answering Norah's questions about God and creation.
• I witnessed Madeline improve her social skills as she interacted with others at the beach.
• Our awesome families helped out so much by doing activities with the girls.
• My sweet husband and I were a team all week. Spending time with him without his work computer was pretty amazing. 

So from now on, I think I'm going to have a different family vacation perspective: savor that precious week with my family - my loud, energetic, perfectly imperfect family...... and plan my 15 year anniversary cruise..... hey, it's only 3 years away... :)  

This Adulting Gig is Exhausting.....

Parenting is hard ya'll!

Emotionally

Physically

Just hard.

Last week, I was done. I mean totally absolutely done. Madeline was not taking her medicine, so we had to change course and decide on another medication. Norah, my typical child, has discovered her whining voice - and lemme tell ya, I'd rather listen nails down a chalkboard while watching paint dry while being forced to eat generic ketchup with non Chick-fil-A fries.

I had zero desire to pray, much less open my Bible for anything. What was that going to change? Madeline was still not going to swallow a pill, and Norah's voice can't magically turn off the whine mode.

Jesus - you've got nothing for me. What good is it going to do to talk to you or read about something that happened what feels like eons ago? My circumstances are not on your priority list. Madeline's autism and ADHD will still be there tomorrow.

This was my heart and this was my attitude. Then for whatever reason (yeah, it was God) this verse came to my mind:

For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.  Hebrews 4:15-16

Wow. Why would I not come to Jesus? Why would I hold anything back? The creator of the universe came to the earth as a man and was tempted and stayed sinless....... AND sympathizes with my weaknesses. The Bible says I can come to him with confidence. Jesus is so tangible to me and yet day after day I disregard him as some "higher power" who can't possibly care about me. Ya'll, there could be nothing further from the truth.

I don't come to Jesus to "fix" Madeline. I come to Jesus to get to know the One who created Madeline and ask for wisdom as to how to steward this precious gift. 

I don't come to Jesus like I would come to a genie to grant my wishes for a better life. I come to Jesus to ask for his grace to deal with the life he's called me to lead.

I don't read my Bible so Jesus will say "Great job, Chris, you've checked off your religious box today. I guess I can make things a little less stressful today." I read my Bible to learn more about who God is and how my relationship with Him defines my purpose here on this earth.

When life gets stressful I shouldn't run away from my Father, but run to my Father through prayer and reading the Bible..... with confidence. Every time I try to live out this thing called life on my own, I fail miserably.

So the long and short of it? I'll leave you with this:

Just a Little Hello from the Girls

Mama had a come apart.....

Have you ever known you were about to enter into a stressful situation? You prepare: I'm going to do it this way and have this attitude and if plan A doesn't work I'll try plan B. I did all of that when it came to giving Madeline her medicine this morning. You all saw my plan. I was creative and had it all orchestrated to play out like that Spoon Full of Medicine scene in Mary Poppins.

At first things started out pretty good. She spit it out and we were positive and kept trying. I smiled and was encouraging and felt pretty good we had this thing. About 30-45 minutes into trying, that Marry Poppins turned into a red-eyed, yelling lunatic - mama had a come apart! Think about being at the vending machine and the darn thing just won't take your $1 bill. So what do you do? You straighten the bill out, rub it against the machine to get all the creases out, say a prayer and try again, and again, and again...because you are NOT leaving there without that snickers bar!

This has to be done today! Do you hear me? TODAY! You will not watch tv, or play with your iPad or go to school until this pill is swallowed!!!! 

I stomped, I yelled, I fussed, I made sad faces, I threw up my hands, I cried - it was quite the tantrum. After the dust settled, I felt like a complete failure. I went into this with the best intentions and completely lost it. On the way to take her to school, I told her that I was so sorry for yelling and asked for her forgiveness. Luckily, she said "ok" and held my hand. 

For some reason, I had gotten it into my head that this pill had to be swallowed today or it would never ever happen and she would never ever be able to swallow pills for the rest of her life. When I look at it on paper, that is one of stupidest sentences I have ever written. 

1. She is 5.

2. She has never swallowed a pill before - this is all new.

3. The texture of the pill gets sticky once wet.

In the middle of the tantrum, none of those things mattered - MY needs were the only thing I cared about. When it was all over, I called my mama (she is a pretty amazing lady) and she said these words to me. When it comes to "this has to be done now", you can apply that to cleaning the house, or grocery shopping, or anything else - just not people. Instead of looking at her and saying You know what, Madeline, let's try again later.....I made it about what I wanted done in that moment. This is something I am going to marinate on for quite awhile, because I'm sure this can be applied to other areas of my life. People matter more than my agenda.

Tomorrow is another day and I'm so thankful His mercies will be new once again. 

Mama Got Creative

Madeline starts a new ADHD medication tomorrow and it only comes in the form of a capsule. I knew this would be no easy feat, so I came up with a plan. I wrote a letter from Leonardo to Madeline, complete with Ninja Turtle capsules and a sticker chart. I placed it in and envelope, put her name on it, and stuck it in the mailbox. When we got home from school, I let her get the mail; she was so excited!

 After several attempts and a few bribes, she swallowed 2 Ninja Turtle capsules and even got a phone call from Leonardo, himself, to congratulate her on being a SUPER GIRL! (Many props to our sweet friends for the call). Ya'll, it was like a tween oogling over her crush! She had no clue what to say to Leo, but her smile was as big and bright as the sun! Fingers crossed all goes well tomorrow.

I bet you'll never look at a Tic-Tac the same - because they are Ninja Turtle capsules. ;)

The Ninja Turtle capsules are Tic-Tacs 

Autism? What's that like?

One of the reasons I created this blog was to not only share how Christ is using autism and ADHD to change our family, but to also create awareness about autism. So, what does this autism thing look like? There is a popular phrase that is so true "If you've met one person with autism, you've met one person with autism." Just like each person is different, each child with autism is different. So, I'm going to change the question. What does this autism thing look like for Madeline? Ah! Glad you asked!

Literally Speaking

I made the mistake one time of joking with Madeline that "There is a hole in your belly! Look!" She completely freaked out and stood crying and pointing to her belly button. Autism does not leave room for jokes - life is black and white with little room for those gray areas. The first week of school, her teacher asked her to "get your book bag" Madeline yelled at her teacher "it's a backpack, not a book bag!!!" You see, her preschool teacher said backpack, Dora says backpack, every cartoon on the Nick and Disney Jr says backpack. That afternoon, I took a picture of that thing she keeps her books in and carries to school. I showed it to her and explained that some objects have more than one name and that it was perfectly ok to call this object a book bag or a backpack. Concepts that come naturally to a typical child have to be explicitly taught to a child with autism. Some children may get in trouble for being sarcastic with their parents - we give her a big hug and may tear up a little.

Socially Speaking

Madeline LOVES people. Wherever we go, she wants to say "hello" to everyone she meets, and in return, everyone she meets should (in her mind) say "hello" to her. It's a good thing I'm an extrovert, because I am always meeting new people. Before early interventions through her preschool, Madeline would rush up to a fellow toddler and just stand there and look at him/her. She so badly wanted to say something, anything, but could not muster up the words or phrases. Now, she will actually start a conversation with "What is your name?" or "What are you doing today?" She's not quite sure what to say past that, but it's a work in progress.

Conversation does not come naturally to Madeline and has to be taught through visual cues, social stories, a tv show, or role playing. One of the introductions she has been taught is "What are you doing today?" This can be kind of awkward when she says that to an adult upon first meeting him/her, but her infectious smile usually wins everyone over. And this is where Madeline amazes me. In order to make her way in this social world, she has to try harder than most to figure out social cues and norms. She studies others and watches what they say and do, and uses that to help her make sense of her surroundings. This is not an easy process and usually involves trial and error and lots of awkward moments.

She has a mother, father, and little sister. She knows her dad is a boy and her mom is a girl. So, upon meeting people she would call all men "dad" and all women "mom". The mom part wasn't as awkward as the dad part, lemme tell ya! Whew! Today she is past that, but still struggles with the sibling situation. When she sees a boy and a girl together, she will call the girl her "sister" and the boy her "brother," because that is how, in her mind, she sees boys and girls.

Madeline is a whiz at talking about concrete subjects and objects. She could name all of her shapes, letters, letter sounds, 1-10 numbers, and objects around the room or in her environment all at an early age. She could not verbalize if she was a boy or a girl until she was almost 4. We could give her sentence starters like "You are a __________" and she would fill in "girl", but if you asked her "Are you a boy or a girl?" she would stare at you or mumble something you couldn't understand. From around the age of 2, she studied tv shows to help her figure out how to communicate with others. This worked well for her at times, and at other times we would have a lot of explaining to do. For example, Peppa Pig likes to tell her daddy that his "tummy is a bit big." I picked Madeline up at preschool and her teacher told me "Madeline told me my tummy is a bit big." Yeah. Good ole' Peppa. A lot of the phrases she uses come from books or television shows. She'll hear the phrase in the show, memorize it, then try and fit it into her everyday language. Pretty smart huh? Again, not always accurate, but that takes a lot of brain power!

Obsessively Speaking

Picture a record player. Remember those? I was born in the cassette tape era, but we owned a record player growing up. I remember that sometimes it would get stuck and you would have to go over and physically move the needle so that your favorite song would keep playing or to move on to the next song. This is pretty similar to how Madeline deals with some experiences, books, movies, and ideas. You saw me post a video about Halloween (at least I hope people got to view it). This is Madeline's favorite time of year. We had to explicitly teach her that Halloween is only in October, because she became so fixated that she thought we should trick-or-treat year round. Hey, I'm all about year-round candy, but not sure the neighbors would be too keen on the idea. A year ago, I introduced her to the book Room on the Broom and was even able to find the movie. She loved it so much, she wanted to watch it over and over again so she could memorize it - and she did. She has the whole script memorized and even makes her sister act it out with her. She knows everyone's speaking part and even makes sure if you play along, you are completely in character - inflection and all. So, after October is over, we try to hide the book, and explain that book is for October. When she's rummaging around in her bookshelf to find a nighttime story and she sees it, she'll say "That's for October."

This has just been a basic overview. I could write a lot more, but this post is pretty long. As I continue to write about our family, you will continue to learn more about autism as it pertains to our sweet, loving, and energetic Madeline Lee! I will also cover the topic of ADHD in a future post. If you ever have any questions, feel free to ask!

These 2 videos changed my life....

I will get to a writing post very soon, but I had to share two videos that have changed me in a profound way. In the first video, you will get to know a remarkable lady in our community. I have stood next to and talked to her numerous times, but have never gotten up the courage to tell her how her Ted Talk changed my life. Madeline is a dancer in her program and she absolutely loves it. It's one thing to admire to a program that does amazing things, but it's a whole other thing to experience the true love that comes from every.single.member of that team. We are so grateful for Debra and her love for those who have special needs. My new motto: Normal - it's a dryer setting. 

This next video was produced by Merrimack and includes Madeline's dance teacher from last year. This is a beautiful dance interpretation of Welcome to Holland - a poem that resonated with me as I first found out Madeline had autism. (Get the tissues)

A Madeline Story: Halloween

The Day I Dedicated My Daughter... To Myself...

** I have been working on this post for a few weeks. Today is a rough day, so I'm posting it as a reminder to myself. God is faithful when things are not so great. She is His and He loves her. **

It was Sunday. I had spent the morning making sure Madeline had a cute dress for her baby dedication. She looked so pretty and our friends and family were there to support us as we declared her to be God's. We stood on the church stage holding our precious daughter with the best of intentions. When the pastor asked us if we would raise her according to God's word, we said "we will". When the pastor asked us if we would raise her to love God and others, we said "we will". He prayed over us and we walked away with so much hope and anticipation.

Over the next couple years as I watched my daughter grow, I also watched my friends' children grow. They were talking, but I couldn't understand most of what Madeline said. They were saying the funniest phrases and making jokes; Madeline couldn't answer my questions. They sat still and played tea party; Madeline came along and knocked their plates to the ground.  They wore pretty big bows in their hair; Madeline ripped hers out after 2 seconds and threw it on the ground. We were up early. We were up late. I was constantly running. I was constantly chasing. The only sentences she strung together were those repeated from Mickey Mouse Clubhouse. When I called her name, she never came. She played beside friends, but never with friends. My first experience with a mother's morning out was anything but pleasant. Going out in public usually had us running around restaurants and preventing her from climbing the walls. Then, one day (after weeks of Googling) I looked at my daughter's preschool teacher and asked the question: "Do you think Madeline has the 'A' word?" (I couldn't even bring myself to say the word) Her response "There are some red flags."  I felt like I had been hit by a ton of bricks. My prayers went something like this:

STOP. This is not the child I dedicated to you,  Lord. When I got up on that stage with my baby, I was dedicating a girl who was going to follow all of the rules. We would go places and everyone would comment on how well she behaved is and I would tell them thanks and think how awesome my husband and I are at parenting.  No. This cannot be right.  She's supposed to follow rules and want to wear dresses and play nicely with others. That's the girl I dedicated. I stood on that stage full of hope and promise and now you tell me she might have that "A" word.  This is not what we had planned for our daughter. 

This is not what we had planned for our daughter? 

I stood on that stage and in front of my church family and declared "She's Yours, God," and as soon as I stepped down, I raised her like she was mine.  Madeline is a gift given to us by God to steward, not to control and manipulate to be exactly how I want her to be. I spent so much time comparing her to "normal" children and focusing on what I thought were weaknesses, that I was not embracing the true joy that is Madeline. This is also true of my typical 3 year old. I am not here to determine her career, likes/dislikes, political affiliation, college path. The Lord chose me to be the mom of my two girls so I could raise them to be who He wants them to be for His purpose.

After a two-year process, we finally came back from Vanderbilt with an Autism Spectrum Disorder diagnosis, as well as an ADHD diagnosis. My daughter has autism. Not that "A" word - autism. I used to be scared of this word. I was scared to say it because then that meant I would have to face the reality that it's a part of my daughter's life. God is not surprised by autism. Before the world was formed, He knew my sweet Madeline would see the world through different eyes. And before I took my first breath, he chose me to be her mom. How foolish of me to have wasted any time making comparisons. God has given Madeline the most open and accepting heart. Her smile can light up the darkest places. She has this amazing memory and continually blows me away by what she knows. Some days are difficult and long, but instead of getting angry at the diagnosis, I am learning to ask God how ADHD and autism can show us more of who He is and how we are to fulfill our purpose while on this earth. And our purpose definitely looks a little different than your average family. There are some days I am adjusted and handle things well and there are days I am pretty sure no one will nominate me for "Mother of the Year." You see, this is where grace comes into play. The same God who gave Madeline to me, is the same God who loves me even when I have my meltdowns and disbelief and disobedient moments. It would take page after page to describe the many ways God has opened doors, and connected us with amazing friends, provided us with helping family, and put people in our lives who genuinely love Madeline.


So now my prayers sound a little more like this:

STOP. I just want to thank you for making me the mother of the most kind, thoughtful, accepting person I have ever met. I never thought autism and ADHD would be part of our journey, but you have given us so many resources and an amazing community of people to be there along the way. The days can be long and I may lose it and we may get weird looks and stares as we run down Target aisles, but through it all allow me to remember who You are and ask "How can we steward this precious gift that is Madeline Lee to better live out the gospel in our own lives and in the lives of those around us?"

AMEN. 

WELCOME and PURPOSE

Welcome to my blog, ya'll! If you are reading this you know who I am because I granted you the access to read my posts. The reason I have restricted access is to protect our family's privacy. The internet can be a creepy place.

I just wanted to take a minute and let you know the purpose of my blog and what to expect when you're reading. Recently my sweet daughter, Madeline was diagnosed with Autism Spectrum Disorder and ADHD. This process has changed me (and will continue to change me) in a profound way. I am learning to rely on Christ and His plan for our family and not my strength and what I thought I had planned for my family. I created this blog so I can share how Christ is using autism and ADHD to change me as I live out the Gospel. There are lots of great blogs out there about autism. There are a lot of great blogs out there about getting to know Christ. This blog is a marriage of the two as it relates to this crazy life I find myself leading. My goal is always to share about what God is doing in my life in hopes that someone else out there might learn something new or find themselves nodding their heads out of understanding - it is never my intention to prescribe my lifestyle and my calling to anyone else. The posts will be weekly, so I don't overcommit myself.

So that's the story and the setup. Stay tuned....