Nothing is Wasted, Part Two.

I both love and hate that life circles in roundabouts. I love it because it seems that just as you had forgotten yesterday’s pain and struggle, and the strength that emerged to walk through that pain, you get a little reminder of what went down. You can see the balance of struggle and strength clearly this time, or at least a bit more clearly. I hate the roundabouts because there are too many cute, “put it on a piece of wood and hang it in your kitchen” quotes that come out of it. {I have those quotes in my house, so ‘hate’ is a side-eye-sarcasm here.} You’re able to see the “purpose in the pain” the “beauty for ashes” or that “nothing is wasted”.

Nothing is wasted is the least offensive positive spin for me and my personality. I don’t want to chin up just for positivity’s sake. I don’t want to be made an example of for the sake of learning something worthwhile. Life is hard enough without feeling like a pawn in the game of life, “here’s your purpose in the pain moment, Courtney! Good luck!”. It feels a bit like The Hunger Games to me. At least with “nothing is wasted” I can remind myself that ‘this too’ will be recycled. It’s a rhetoric game with me, for sure. Or maybe I’m just more ‘green’ than I thought and I actually like to recycle. Nevertheless, these sayings exist for a reason. They’re all true. Someone fought and came out the other side alive to tell the story.  Life does feel like a game and it really does feel like The Hunger Games more often than I would care to really talk about. And I know I’m not alone. Thank goodness.

I was picking Molly up from school the other day and I was running late because: living with a baby. As we were leaving the school, we shared the hallway with only one other mom and her daughter. Her therapist was also there, who happened to be Liam’s occupational therapist when he attended Fairview. I could see what was happening from a far way off. The school had cleared, which gave opportunity for a therapy lesson for this little girl, and she was not pleased about it. Her task after her classmates left for the morning was to walk down the hallway on her own. Not for her mom to carry her, but to walk down the hallway on her own. Not difficult, right? Wrong.

In what feels like nano-seconds, I assessed what was happening, smiled in my soul and on my face. Molly started to notice and asked questions: “Why is she crying? Why is she yelling? Why is she sitting on the ground? She needs help, mommy.”. I looked ahead to the mom and the therapist and smiled my knowing smile. The therapist and I caught eyes, and she looked at the mom and said “Here comes a mom that knows. She understands. You don’t have to worry about her.”. I almost lost it right there. I looked at the mom and smiled and said “I’ve been there, we’ve done that. You’ll make it through.”.

My head began to spin and tears began to fall as we walked past them and could still hear the little girl crying and fighting her way through. As I passed Liam’s old classroom I could see him and his classmates at age 3 and 4. I remembered the struggle. I remembered the fight to not be embarrassed but proud of my hardworking son. I remembered seeing other families walk out of the school with no fuss and how I was so jealous of them. And in that moment, I was filled with so much hope for that mom. I knew what she didn’t. I knew that the hard work and pain would not be wasted. I can’t even type it without my eyes filling with tears. I wanted to rush back and hug her and tell her that it would all be okay, but that’s not how it works. This is her story and her struggle and one day she will get the opportunity to feel pride and joy and gratitude of looking back and seeing that nothing is wasted. However, I do show up a little late every day now-on purpose. I walk a little slower in hopes of being in the hallway alone with that hardworking little girl and her mama so I can smile knowingly and hope that she sees me seeing her. I say “keep on” and raise my hand in true Hunger Game fashion and keep walking, tears in my eyes, remembering that Nothing is Wasted.

So, keep on friends. There is purpose in the pain, beauty for ashes and hope in tomorrow. We are in this game of life together, and please know that Nothing is Wasted.

XO, Team Oakes

Advertisements

The Golden Ticket.

goldenticket

First grade tomorrow {insert all of the emoji’s here}!!! This summer has been so all consuming that first grade kind of snuck up on us! This is our 4th year of school for Liam, and if I’m being honest with myself, every year is a big deal that brings its own bag of questions, hopes and fears…but first grade?! It feels pretty major.

I wasn’t able to attend the first grade orientation last night, so I went in today to meet Liam’s teacher and bring in his school supplies so I could survey his room and get a feel for where Liam would be learning for the year. As a mom with a kid who has autism, you pray really hard, you hope really hard, and you sprinkle all the good vibes around really well for a teacher that you can partner with. Partnership is The Golden Ticket when it comes to most things, but especially as it relates to Liam and his education. Matt and I can’t do it on our own, and his teacher’s can’t do it on their own. All that to say, when I met Mrs. Bennett {see: Msr. Bennett}, I was overwhelmed with gratitude that she had The Golden Ticket in hand.

As we began to talk about Liam and first grade, I asked benign, but what could be annoying questions. Questions about snack time, desk position and schedules, which can feel a bit pushy to me to be asking for information that doesn’t necessarily matter to me as a parent, but for someone on the spectrum, these questions matter. They can make or break Liam’s education, and so I ask all the questions. After my questions and concerns were expressed, Mrs. Bennett then met me with the question that I love the most: “I know about the spectrum, but I don’t know about Liam.”. I could have hugged her right then. The Golden Ticket. She gets it without even one class period. Without even observing Liam, she already understands that not one child with autism is the same. I told her that Matt and I had planned to email her a list of Liam’s strengths and quirks so that she could understand how he moves through the world and she was eager for the information. She wasn’t scared of his diagnosis, she wanted to LEARN. The Golden Ticket.

All Matt and I desire and pray for as it relates to Liam’s education is partnership with those in Liam’s world to assist us in setting him up for success. We can’t do it alone. We are his parents and advocates, we are not his teachers, therapists, or paraprofessionals. We have to both stand back on the sidelines and watch, and advocate fiercely for the aids to his success. It’s such a fine dance that we desire partners, not a fight.  And we are quite certain those prayers were answered for Liam’s first grade year, and for that we are so grateful.

Dear Liam the Brave,

FIRST GRADE!!!! Buddy, you’ve grown so much this summer and we are so proud of you as you adapt and learn about the world around you. We want you to bring YOU to the world, and we want to help you learn everything you should and everything you want to about all of the things. We are so excited that Mrs. Bennett will teach you for your first grade year, we know you’re going to love it!  Msr. Lang will be with you again to help you learn the ins and outs, as she was last year and we are so thankful that you will have familiar friendship faces in the classroom. You’re going to read stories that take you places, and learn math that helps you sort and build ideas. Daddy and I know you have so many ideas in your mind swirling already, and we are confident that the first grade will unpack them in a new way. It’s hard to imagine how we could be more proud of you than we already are, but we know that in 9 months, you will blow all of our minds once again. You are our brave son, and we love you to the moon and back.

Here’s to your first grade year, buddy. xo

Love,
Daddy, Mommy & Molly

Nothing is wasted.

13699949_1196069233771658_2424505339790816135_n As you do on your birthday, Liam opened his cards and gifts from our family, including a card from his Great Auntie Carol and Uncle John, who live in England. Auntie Carol had written “Liam the Brave” on the inside of his card, and while we all knew the significance of those three words, Liam listened and then kept on with his birthday treats.

The next evening at dinner, I saw Liam staring off at something and then he asked “I am brave?”. I looked around and saw that he was staring at the card that Auntie Carol had sent him and I was overcome with shock that Liam had remembered the specific words that were written for him in that card. Later on, I asked everyone in the family if anyone had read the card to him that day or referred to him as “Liam the Brave” that day and no one had. He had just remembered the words from the day before. He remembered the words that were read to him while he was surrounded with excitement and balloons, and a sister wanting to get into his gifts and the anticipation of what was wrapped up for him. It may not seem like a big deal, but if we’re honest this can be a tricky task for any of us, but for someone on the spectrum that deals with language processing issues or sensory distractions, it’s a major accomplishment.

I’ve not been able to get that moment out of my mind since last night. We deemed Liam, “The Brave” 4 years ago. I mean, he has his own hashtag for crying out loud. {#socialmedia #liamthebrave} I’ve hung banners and prints with the words “Brave” in his room. We’ve whispered to him how brave he is countless times. But to hear him acknowledge it, and wonder about it, and listen to us discuss this word that has defined him for the last 4 years….it was one of those moments.

It was one of those moments when you remember, yet again, that nothing is wasted. That our words breathe life, and hold more power than we will ever know. That hanging silly handmade banners with words on them in your children’s rooms matter. They WILL eventually comprehend what that means. It may look different for you than it does for us, but that’s the glory about celebrating the little things. You realize that all your unique “little efforts” that you’ve worked so hard on for days or months or years MATTER. The birthday card from Auntie Carol was used as the defining moment, but all the years of us acknowledging Liam’s bravery and saying it over him and surrounding him with it, made the difference.

So. Keep saying the words that matter. Choose the words that breathe life, even though you may not see the change those words and little efforts are making right away. Nothing is wasted. Ever.

Happy 6th Birthday, Liam the Brave.  #liamthebrave #iambrave #nothingiswasted

XO,

Team Oakes

Thank you.

image1

Three years ago, when Liam was two and a half we had a substitute therapist at Bravehearts, Karin, to take over for the summer. I was apprehensive because not every therapist is a good fit, and the fit can make or break progression. However, within five minutes of walking Liam around the arena, she b-lined over to me, looked me square in the eyes, and asked “Has anyone used the word apraxia to describe your son?” I was stunned and said “No,” and she walked right back to Liam to finish the session. After, she began to describe what apraxia was, gave us some tools, and websites to learn more. Over the course of the summer, she was doing drills with Liam that made us all look wide eyed and shocked (like putting a tongue depressor in his mouth while asking him to make sounds-which he did not love), but also gave us comfort knowing that this woman knew what she was doing, and that God brought her to us.

The fall came and Karin was leaving Bravehearts, and so we asked her if we could follow her to other clinic 75 miles away, because when someone has the experience and the relationship with your kid like she did, you follow her ANYWHERE. For eighteen months, every Wednesday, Liam and I would drive over an hour, both ways, in silence. I would talk to him occasionally about the landscape and the big trucks, knowing that he couldn’t respond, but also knowing that nothing is wasted, and that he heard his momma talking to him.

For 18 months, I remember sitting in the waiting room, looking around at the families who were waiting for their appointments. Some of the kids had typical delays, some had more severe delays than Liam, and yet in our differences, I felt safe and at home. I watched as kids graduated out of therapy and, at the time, I was filled with both joy for those kids and their families and a mixture of hope and jealousy, not knowing what Liam’s future would hold. We would often pray “God, we know you see Liam. We know you’ve brought us to this place. We know you have our future in your hands. Please.” We couldn’t even ask for the specific request of hearing our son speak. It was too overwhelming to be that vulnerable with our faith, we knew others were praying specifically for Liam and that helped us stay focused in the present and the job at hand.

But then it happened.

18 months ago Liam began talking. Slowly, bits of words and gibberish here and there; then more concrete words emerged. Our drives into Arlington suddenly began to change. He would begin by saying “Hi” to me periodically in the car, then asking for his water, then would comment on the landscape; now we discuss the big construction taking place and it blows my mind to think back to where we began.

Which brings us to today, it was our last day at Arlington with Karin. I can’t ever say good-bye to the people that have been instrumental in Liam’s life. And our relationship with Karin is not over, as Liam is on a journey with his language and one that may find us back at Arlington down the road. But for now, we are hitting the pause button, which seems an appropriate time to say “Thank you”. But, how do you thank the woman that unlocked our son’s voice? How? I don’t know, but this is a start:

Karin,

It took you less than five minutes to see Liam. To explain what you believed to be the problem and then the solution. You often joke that you were so hard on him and that the beginning of your relationship was a love/hate one as Liam would fight you on the work that needed to be done. But you have to know he saw you too. Liam never trusts anyone that isn’t a good match for him; he just knows. He won’t waste anyone’s time with nonsense. Thank you for allowing us to follow you to Arlington. It’s been 3 years of hard work and insights and homework and deep hope that our journey with Liam’s speech wouldn’t end until we HEARD him. We can’t believe this day is here, and that God brought us to you. How do we say thank you to the woman that unlocked our son’s ability to verbally tell us that he loves us, if he’s sick, or that he had so much fun at school? We think of you all the time when we hear new ideas and words and phrases come out of his mouth, and we will NEVER forget where you’ve brought us. You do miraculous work, the stuff that turns parents’ dreams into reality. THANK YOU. THANK YOU. THANK YOU.

Much Love and Respect,

Matt, Courtney & Lee (Liam)

 

IEP’s and an Anthem.

IEP’s and our Anthem.

It’s the end of the school year (can I get an AMEN?!) and with that comes the infamous IEP meetings. I always feel for the teachers and staff that have to call in substitutes and miss class for what must seem like endless meetings day in and day out. I do not envy them, and I deeply appreciate those who show up to every meeting and advocate for their student that  is represented by the IEP.

As the parent with a child of an IEP, nothing can really prepare you for reviewing your child’s IEP. (By the way, did you know that you have a legal right to review your child’s IEP *BEFORE* the meeting so you fully understand it and are well prepared with questions? All you have to do is ask for it!) The review is emotional and difficult as you pour over page after page of cold assessment of what feels like laser-like attention to the deficits of your child. For this reason alone, it is worthwhile to go through the IEP before the meeting. There is so much to process, and we never want to go into the meeting emotional or gobsmacked at the lists of goals. It’s hard to stay centered in the present after reviewing the assessments as your mind floats to the future and stays there while processing in fear and uncertainty. We are well aware of the area’s in which our child struggles; no one needs to tell us that he has difficulty sitting in his seat, or responding appropriately in certain situations, or that “Liam is a really great kid…”. After pages and pages of what feels like deficits, the “really great kid” part feels patronizing and insincere.

However, this is part of the process. We have to acknowledge Liam’s challenge so we can put in place accommodations for his success. I have to remember that the IEP allows Liam to learn to the best of his ability. Matt and I study the end of year assessments of Liam’s progress to figure out what accommodations he will need for next year. And while the individuals that sit around the table work with him for 8 hours a day, WE are his parents. WE have HIS best interest in mind, before rules,laws, and available resources come into play. So when we read pages and pages of challenges that Liam faces in cold report form, and the fear and tears overtake us, we HAVE to remember that this is only the beginning part of the process, and that Liam carries the end part. Liam never disappoints us with his part of the IEP process; he always overcomes and succeeds.

When I heard the song “Rise Up” by Andra Day, I both stood taller and sobbed in comfort. The only thoughts that come to mind when I hear this song is our journey with autism and advocating for Liam. And today after reviewing the IEP for our meeting this Friday, I deemed it our anthem.

https://www.youtube.com/watch?v=lwgr_IMeEgA

The chorus is the very best part and makes us stand up tall, prepared to take on the world for Liam:

And I’ll rise up

I’ll rise like the day

I’ll rise up

I’ll rise unafraid

I’ll rise up

And I’ll do it a thousand times again

And I’ll rise up

High like the waves

I’ll rise up

In spite of the ache

I’ll rise up

And I’ll do it a thousand times again

For you

-Andra Day “Rise Up”

Liam Mathew Joseph,

Your greatness can not be contained in an IEP.  We advocate for you every time we walk into that room, and you better believe the first thing we do is talk about your strengths. We control the conversation with understanding of your challenges in the light of your strengths. We help those that care for you and teach you understand how you work best and how you come to the world, and we will do this for you as long as we have breath in our lungs. You teach us daily how to “rise up, high like the waves”; you are our greatest teacher of things that truly matter in this life, and we are so wildly proud of you.

Love you to the moon,

Daddy & Mommy

Remember.

I can’t think of a better way to start this year’s Autism Awareness Month than to remember how far we have come on our journey with autism. I’ve spent a lot of time in the last week re-reading past blog posts and looking at old pictures in anticipation of this month. Autism Awareness Month means different things to different families, and for us it’s a time of reflecting on and looking forward to our work of educating and advocating for autistic individuals and their families.

IMG_4276

Corbyn Tyson created The Fatherhood Project series a few years ago and highlighted our family in one of the episodes. To watch it now, and to know the change that has taken place in Liam’s life in only two years, is overwhelming. We are so grateful for this short film to serve as a reminder of things past, but more importantly, as a reminder of the possibilities of the future.

Here’s to the past and the future possibilities!

xo, Team Oakes

For The Love of Community.

Last week I flew to Austin in what was a culmination of 6 months on a launch team for Jen Hatmaker’s new book, For The Love. {What!?} It was one of those right place, right time kind of moments, and one that I will never forget. I was ready to read the book and participate in the publisher-launch team banter. And I was ready to talk about the book {who has a hard time talking about the level of real life connection that Jen has?}. I was kind of ready for a private Facebook page, where 500 other launch team people shared vulnerabilities, prayer requests and dubsmashes{introvert here, people}. But I was NOT ready for the impact that flying to a state I had never been, staying at a house with 12 other women I had never met, walking around Jen’s property with 200 other launch team members that I had never met, and having a heartfelt connection with another stranger on the plane ride back would bring.

The thing I can not escape upon my return from a whirlwind weekend is something that I have heard Jen say numerous times in the last six months:

“There is room at the table for all of us.”

I encountered so many unknowns last weekend. This introvert stayed with 12 women, and partied with 200 other women that I had never met. {I am so beyond proud of myself for this} We all kept looking at each other saying “This is SO weird! Who does this?!?” And in the whirlwind of 36 hours, we found community. Introverts, Extroverts, Girly-girls, Hipsters, Southern gals, Northern gals, Momma’s, Single Free-Spirits and yet we had ONE common thread in those first few moments: launch team member. And by the time Sunday came, we had so much more than that. We had made a table together. We had empathy, understanding, perspective and community. We made room for each other.

“We are not promised a pain-free life but are given the tools to survive: God and people.” -Jen H.

Whenever I think of community, I can’t help but think of this autism journey that we are on. The community that has formed around us and walks with us, is air in our lungs. The value of being seen and heard and loved is unmatched by any currency. There is room for all of us at the table. Those with disability and those without, those who parent special needs, and those that don’t, those with a faith, and those that don’t, those that walk in chronic pain or loss, and those that don’t. There is room at the table for all of us. Life is richer, more beautiful when our table is set without judgement or pretense, and we say “Come! Let’s eat together!”. We share the load, the burden of the moment, and I can’t imagine anything better than a group of people taking care of each other and sharing in a feast of community.

“Nothing can happen-no tragedy, no suffering-that cannot be survived through the love of God and people.” -Jen H.

XO, Team Oakes

A Whole New World.

Kindergarten!!

We can’t believe our baby is going to be in school all day!! What if he needs something? Can I pack a suitcase of his favorite things? Does he need his blankie and monkey? Sweet heavens, separation anxiety for parents is a real thing {too bad we know nothing of dramatics in this family}.

I re-watched our episode of The Fatherhood Project this week as I was contemplating our new transition coming up. Hearing myself talk about my desire to hear Liam’s voice brought immediate tears to my eyes and gratitude to my heart for all of the things I now hear him say on a daily basis {I ‘ove you, mom}. It also reminded of when we began this journey three years ago and we realized that my fear–our fear–can’t stand in his way of growing and learning.

We’ve been gearing up for this moment since last November, when we started inclusion into a mainstream classroom, so we are well prepared. All of our ducks are in a row, IEP meetings and documentation is in place, teachers, we’ve met paraprofessionals and resource teachers and our team is formed. So why such crippling fear? I’m sure all parents are plagued with thoughts of the future at pivotal moments of their children’s lives, right?  I realized this week that it seems we are always subconsciously pushing the future thoughts of “Will he be independent? Will he be happy? Will he have people? Will he {fill in the blank}?” away so we can live in the present in order to advocate for Liam. He doesn’t need us to live in the future, he needs us in the here and now.

It’s impossible to have all of the answers right now; we don’t even know what answers to what problems we will need! We can’t see into the future and make the path as simple and plain as we would like to, because man, cut this kid a break. Doesn’t he have enough hurdles to jump through on a daily basis? Fear is so unreasonable that way. Fear demands the answer now, and I have not encountered any life circumstance yet, when fear gets an answer to its unreasonable request. The only answer that has only ever come in the face of fear is this: Wait. Be Still. Hope. What we can do is be present, we can see his immediate need and advocate for that. We can choose to push fear aside and walk in faith and hope that God has gone before us, and knows Liam and ourselves better than we do.

And so, after we entertain a bit of our fear {dramatics and all}, we close the door to it. It still circles us, watches us, ready to remind us that we don’t know what’s going to come next; however, we close the door and say, “We are done with you for now’. We acknowledge our fear and uncertainty, but we also acknowledge the work that has been done, the faith that we have in the hope and assurance that God goes before us, and the brave courage of a 5 year old about to start kindergarten.

“On the day I called,

you answered me,

my strength of soul you increased.”

Ps. 138:3

Dear Liam,

Buddy! You are about to begin a new adventure, in a new classroom, with new teachers and new friends. You have been prepared to the best of our ability, and you have risen to every challenge you have faced so far in your young life. You always lead the charge in bravery and courage around here, and this will be no different. We have prayed that God would bring friends into your life that will make this year’s journey sweet and fun, and we believe that is going to happen. We can’t wait to see what this year holds for you, sweets.

We are your biggest cheerleaders.

Love you to the moon and back,

Daddy, Mommy & Molly

Music to our ears.

We decided to keep Liam out of summer school this year. As any special needs parent knows, there aren’t many decisions that come without a pro/con list or many conversations with teachers, therapists and outside counsel. Matt and I knew in our gut, and this feeling was confirmed from his team, that a summer off was going to be a good training ground. Because his language is coming in like a flood right now, the best place for him to practice language is a summer full of interactions with his peers. {INTERACTION WITH PEERS. That this is happening, and something we talk about, still blows our minds.}

We are almost a month in, and we are so glad we made that decision. It seems like we are all able to breathe a bit for the first time in 3 years. 3.years {whoa}. We’ve kept his therapy schedule the same, for obvious reasons, but because he isn’t also in school, he welcomes the structure and consistency that comes from therapy. We’ve enrolled both kids in swim lessons and different local programs like karate and ballet, and we’ll be finishing the summer up with a family getaway — a first for us!

There have already been so many moments of growth that we have witnessed, and the sight of them is so incredibly sweet. There is never a way to explain what it is like to hear your non-verbal child talk and express himself {speaking and expressing are two different things}, or interact with peers using language AND SING. These are ways to communicate that we didn’t know he would ever experience. You grieve a bit in the not knowing, coming to terms with circumstances and outlooks so that you can move forward in the present, all the while carrying a bag of hope so heavy it feels like it will be your undoing. And then one day, like last December, glimmers of hope become a reality, one word after the next after the next, after the next. And it’s just been an explosion of growth ever since.

Liam has been singing every chance he can get this summer. Any show or movie that has a song in it, he tries his best to at least belt out the last “wooooorrrrrrddddd”. It’s the very best thing in all the world. And tonight, at a village birthday party, probably the 30th odd party he’s been to in his little life, after 30 odd attempts of Matt and I navigating social expectation, setting up understanding and modeling, Liam sat at a table full of his village peers and with Matt and I at the clear other end of the table, Liam {unprompted} sang Happy Birthday with the rest of the village….because that’s what you do. I had to walk out of the room because the tears came on too fast to handle. After so many attempts, so much work, so many gatherings, our baby did it on his own. With his own words.

Effort matters. It just does. Our effort looks different than yours, because our goal, our person, is different than yours. But I can tell you mom and dad, all those moments that you stay the course, not seeing the light at the end of the tunnel…they MATTER. Hope hopes. It breathes life into your weary bones. Stay the course. Keep on. And every other motivational quote that sets your lungs on fire and gets you out of bed in the morning.

IT.MATTERS. It just does.

Just Keep Swimming,

Team Oakes XO