Adios reality…hola Mexico

It is 4:56am and I am awake. And, it is not because one of my kids woke up ungodly early or because my mind is racing with the long todo lists for the day. It is 4:56 and I am awake because my hubby and I are in route to MEXICO!!! We’ve been looking forward to this day and counting down to this day for a while. And now our bags are packed and we are on our way. And to be honest, I already miss my kids a little. Because that’s what being a mom is. The same little people that drive you to the edge of insanity day after day are also the people who can melt away all of stress with one adorable gesture or one simple “I love you”.

Last night was filled with a lot of last minute to dos. But the most important thing on the list was to steal a moment of 2 for some snuggles with my kiddos. I tucked Rowan in and he let me snuggle him in the rocking chair singing all of his favorite Disney songs. And then I put him in his bed and he said “bye bye momma”. Grayson, aka mr. Independent, did not want to snuggle. But it was so cool to have a conversation with him about going on a trip and hearing him ask us questions and understand what we were saying. It somehow feels easier to leave knowing that we were able to explain our absence to him.

I know that James and I will have a million moments over the next 5 days that we steal away a thought to our kiddos. But we also know that they are incredibly capable hands. So instead of worrying about missing my kids I am just going to sit here and enjoy all of the things that I will do traveling today that I SO cannot do with kiddos in tow…

20 Travel Experiences that are flipping impossible with kiddos….

1. Carry-on only 1 partially full bag.
2. Pee all by myself
3. Not give 2 shits where the bathrooms with changing tables are.
4. Not worry about how to occupy my time if our flight is delayed
4. Drink alcohol before 8am.
5. Drink alcohol in flight.
6. Buy gossip mags instead of milk and juice.
7. Walk leisurely onto the plane when my boarding group is called. Rather than trying to convince the airline worker that my child (although not under 2) does in fact require pre-boarding so that we can get settled.
8. I won’t flinch every time someone closes the overhead bin because I won’t be worried it will wake my sleeping child.
9. I’ll read a book. Like a real book.
10. I’ll be in control of my own iPad.
11. I will not collapse strollers or wrestle with car seats one million times.
12. I will not chase anyone.
13. I will people watch. Because I am not toddler watching. And I’m a Brost…so people watching is kind of my thing.
14. I will start and finish a conversation with my hubby without 1,000,000 interruption on
15. I will not worry about timing every aspect of the day exactly right.
16. I will likely doze of on the plane. And again in the shuttle to the resort.
17. I will look like a have my shit together…an illusion that is nearly impossible when surrounded by my shorties.
18. I will stroll. Leisurely.
19. I will not apologize 100 million times. For seat kicking, for screaming, for tantrums, for hitting, for anything. Guess what, today…I’m not sorry!
20. I will be sympathetic to others traveling with children. I will not judge them. I will not glare at them. I will help them. Because I have been on their shoes.

I will do a lot of thing over the next few days that I cannot do at home. I will remember that being a mom is just one part of my life. It is a part that I love dearly, but I am proud to be so many other things as well. I will get to spend some real quality time being a wife. Something that can be difficult to dedicate as much time to as I would like. I will drink a little more and sleep a little later. I will read books and soak up the sun. I will laugh with lifelong friends. I will recharge my proverbial batteries.

In honor of traveling with my bestie Joe, founder of re-fresh, re-energize, re-organize…I will do exactly that! Because of a lot of reasons, but mostly cuz it is really freaking good advice.

Re-fresh. Feed your soul and all of things that bring meaning to your life.

Re-energize. Rest, relax and recoup. Give yourself time to process things that challenge you and then move forward with a new sense of life. Of fight.

Re-organize. Take stock of the things that may be barriers and make a plan to do it better.

Adios reality…hola Mexico!!!

JSimage.jpeg

Vacation VS Family Trip:

Our Grayson alarm sounded promptly at 4:20am this morning. And this came on the heels of a text I sent my mom yesterday (literally…YESTERDAY) saying “we seem to be over the 2am and 4am wake-ups”. Touché Grayson, touché. James and I are going on a real vacation next week. And by “real vacation” I mean…our kids are not coming. We went on a “family trip” with our kids in March. And about 24 hours into that trip I emailed our travel agent. Now, mind you, that 24 hours included an 8 hour delay at O’hare airport resulting in a flight that caused us to miss dinner and then we ended the day in a two hour rental car line that lasted until 11pm. So, from our family trip and booked our vacation. And now here we sit about 72 hours before wheels up.

James and I talk a lot about being fresh for our kids. We talk about it a lot, but in reality there just is not much time in our day to day schedule to do and enjoy the things that keep us fresh. The things that keep me fresh are having a cup of coffee in the morning to collect my thoughts before anyone else is up or going for a long walk alone after work or watching a 60 minute Bravo show without pausing it a million times or heaven forbid drinking a cup of coffee without microwaving it twenty times. For James this may mean a long bike ride in the morning or being able to mow the lawn and edge all in one round or sitting down with a book or eating dinner during the week before 8:30pm. The truth is that most days we work in just enough “us” time to get to bed at a reasonable hour and do it all again. I drink my coffee while I get ready for work and Grayson orders us around to change the show or fix the chocolate to white milk ratio in his cup. I take a long walk after work with both of my kids and walk 1/2 the distance in double the time, reloading snacks and negotiating to use gentle hands. My Bravo shows collect in my DVR and usually get deleted to make room for PJ Masks or Little Einstein’s. And, I rarely drink a coffee without at least 3 stints in the microwave. (Insert writing break to microwave my coffee). And James’ reality is bike rides pulling both kids in the bike trailer while looking back regularly to make sure the boys are not beating each other up in the trailer. If he is lucky he can mow the whole lawn in one day. And then maybe, but rarely, the edging happens before the next mow. Reading books is pretty limited to anything by Eric Carle and Sandra Boynton. And dinner is regularly served after 8pm. We figure out ways to work in the things that are important to us, they just happen a little differently than we may have imagined.

So, the idea of 5 whole days on vacation that are just about us is almost too much to process. So many times over the last month I’ve told people that we are going on a vacation to Mexico and everyone’s first question is “are you brining your kids>” The answer is a firm no, and here is why….

Family Trip: Building lifelong memories with your children. Moments of pure bliss and joy mixed in with moments of complete chaos and disarray. Being away from your house without a schedule or a routine and without all of the stuff you need to get through the day. A period of time in which most members of the family are under slept, over stimulated and exceptionally irritable. Tears (from the kiddos and the mommy) are likely.

Vacation: Truly vacating all of the stress and struggles of day-to-day life. An opportunity to have adult conversations and adult cocktails without worrying about possible middle of the night wake-ups. No schedules. No Routines. No problem! A period of time in which mom and dad can sleep and sleep and sleep. Moments of missing the kiddos, but otherwise completely enjoyable.

Travel to a Family Trip: Strollers, car seats, bags…oh my! More stuff than 2 people can handle while carting 2 little people around the airports. Stimulants, distractions, meltdowns. Kind strangers offering a helpful hand. Judgy strangers making me cry. Juice cups, snacks, activities. A hope and prayer that we all survive. Buckle in folks…it’s going to be a bumpy ride.

Travel to a Vacation: One bag, my own bag. Filled with my stuff and only my stuff. No Strollers, no car seats, no wrangling kiddos while trying to load our gear. Bloody Mary’s in hand within moments of walking into the airport. Smooth sailing.

Sleep on a Family Trip: Sporadic, unpredictable, minimal.

Sleep on a Vacation: Abundant, blissful, without interruption, plentiful.

Outings on Family Trip: Requires bag packing, schedule planning, meal preparations.

Outings on a Vacation: Requires flip flops.

Meals on a Family Trip: If we are brave enough to try this requires all of our normal tricks: coloring books, snacks, iPad, stickers, suckers. Plus and acceptance that inevitably one of us will spend at least 75% of the meal outside exploring with Grayson.

Meals on a Vacation: Requires Hunger.

Cocktails on a Family Trip: Requires rock, paper, scissors to determine who will handle the inevitable middle of the night wake ups. More time is spend refreshing cocktails that melt or spill before being enjoyed. A valiant effort that generally ends with both parents giving up and deciding that the effort may not be worth the prize.

Cocktails on a Vacation: Requires a cup.

Pool Time on a Family Trip: Requires the world’s biggest bag of crap ever! Sun tan lotion (Spray and lotion since Grayson’s preference changes daily), towels, pool toys, goggles, noodles, flip flops, swim diapers, swim suit, cover-ups, snacks, hats, sunglasses, flotation devices. (If you are at the beach add: buckets, shovels, Umbrella shelter, extra towels, and a cooler for juice and snacks). 9 million sun screen applications. Usually done while chasing the kiddo down around the pool looking like a crazy person. And dear lord you are a pool with a required “safety check” every hour. Cuz trying to explain to toddlers who want to swim is the lifeguards extra special way of saying “F-You, oh yeah, and I SO do not have kids yet so I’m giving you judgy looks and have no clue what I am in store for.”

Pool Time on a Vacation: Requires a pool.

Ok, so you probably get the distinction here. Please do not get me wrong….I love my children. They are the absolutely joy of my existence. However, I also know that to be good for them I need to be fresh. I need to give myself an opportunity to recharge my batteries. I need to step outside of the schedule and the monotony of our day-to-day life. And believe me, by the time we are wheels down in Mexico we will have already talked about our kiddos and looked at pictures of them a dozen times. Our hearts are always at home, but sometimes our heads and our bodies need to be in Mexico without them. I’m just saying!

JS

Brown Bear Brown Bear…what do you see?

This life, this journey is about knowing when to stop and celebrate amazing things that happen. Sometimes that is as simple as hearing Grayson say “I love you.” Or watching him flush the toilet or wash his hands without verbal cues. Some of the moments we celebrate are moments that are probably pretty “typical” in other homes. Moments like making eye contact when talking or initiating play with a peer or pulling up his own pants after using the restroom. To us, these things are indications that all of the effort and all of the hours are working.

I am amazed by both of my sons every single day. Grayson blows us away with his commitment and follow through. His schedule is more gruesome then I would like to ask of my 4 year old. But he handles is like a champ. He rises to the occasion and he actively seeks out ways to make us proud…to make himself proud. And our son Rowan is just so darn smart. He is so in tune with people. He is gentle and kind and he will always turn your day around. I watch these two in awe every day.

And then there are some days…some moments that we cannot let pass without screaming from the top of our lungs how proud we are as parents. We had one of those moments the other night during a routine bedtime. James was finishing up some dishes in the kitchen while I read a story to Rowan. Grayson was waiting patiently in his room for his bedtime story. He came into Rowan’s room and selected a book. He went down to his room and seconds later we heard him begin to speak. My husband turned off the sink and I stopped reading to Rowan; straining my ears to hear Grayson. And then I heard it…he was reciting a book word for word. I swiftly kissed Rowan and placed him into his bed. And I all but ran down the hallway. I scooped Grayson into my lap. And then the most amazing thing happened. My 4 year old son recited me a goodnight story.

At this time last year Grayson could not speak more than 2 or 3 words in a phrase. And even then he was only repeating common phrases. He could not tell us about his day or his friends. He could not communicate his wants or his needs. Grayson was speaking at half of his age level a year ago. He was significantly delayed. This story just shows how much there is to say about early intervention. Sure, I hate the rigidity of our schedule. Yes, sometimes it makes me tired thinking about all of the hours of speech and therapy we have endured over the past 2 years. Of course there are Saturdays when I just want to lay in bed and watch cartoons with my kiddod rather than prep for 3 hours of therapy. All of those things are true. But do you know what else is true? Last year my son could not even ask me to read him a story. And, on Tuesday night…he read one to me. And that is why we do it. That is why we push. That is why we schedule. That is why we fight. That is why we rise up.

“But I see it in you so we gonna walk it out…AND MOVE MOUNTAINS”!

JS

Speak now…and find peace

Since I started writing about our experiences I have been overwhelmed by all of the love and support from family, friends and complete strangers. There are moments on this journey that make us feel completely alone. Even moments when we are surrounded by people we love. And in some of those moments being alone feels safe. And in other moments being alone just feels lonely. And when I write about our experiences I remember that we are not alone. I remember that the reason I started this blog in the first place is to share our experiences. So many people ask us questions about our experience. It still catches me off guard when people reference personal details of our life. I think “wait, how do you know that?” And then I remember that I am putting it out there for the world to read. I am taking moments of our life and turning them into stories about our experiences. These stories detail our fears, our struggles, our memories, our failures, our wins and everything in between. Sometimes I do not know what I am going to write when I sit down. Sometimes a thought lingers in my head all day long and I cannot wait to sit down and write about it. And sometimes something comes to me so quickly and so clearly that I have to pull over on my commute home and write it down in my notes app on my iPhone. You see, these experiences are our authentic life. They may not come in order. They may not come close to saying everything I want to say. But they represent moments in time. Our experiences and our attempts to navigate something that we were not prepared to navigate. I’ve already said here that sometimes this feels like one big failed attempt to get it right. And in the moments when we question ourselves the most, I am learning day by day to give myself permission to be imperfect. To make mistakes. To do it wrong and then learn to do it better.

There is one particular question about this whole thing that no one has asked me, but it is a question that I am myself every single day. I think about our journey and about my decision to share our journey in this public way and I ask myself what Grayson will say about this experience when he is old enough to understand. And here’s my answer…

These are my words. My experiences. My struggles. My fears. My ups. My downs. These are things that we are experiencing as a family. Most blogs are the result of a conversation that I have with my husband or a friend or a family member. That conversation sparks something inside of me that I want to share. And so I sit down with the intention of sharing my story, our story. The only thing I know for sure about writing about our life is that I want it to be our truth. I want it to represent the good and the bad. I do not want to paint a picture of our life that is not filled with joy and happiness. Because we have an abundance of joy and happiness in our lives. But I also do not want to paint a picture that we are just breezing through this experience. We are challenged every single day. We doubt ourselves and second guess ourselves and replay situations that we could have done better. That we should have done better. I think back to that moment we received Grayson’s official diagnosis. I think back to the emptiness. To feeling completely lost. To feeling alone and uncertain and paralyzed by the fear of not knowing how to move forward. And then I remember moving forward one uncertain footstep at a time. I remember moments of complete numbness. And I remember moments of complete clarity. I think about all of the decisions we made putting together Grayson’s treatment and his treatment team. I remember feeling like these decisions were the most important decisions I would ever make for my child. And I remember that scaring the crap out of me. As parents none of us want to make mistakes. I remember telling friends that building Grayson’s treatment plan felt like the most important recipe I would ever put together. I felt the weight of the world as I chose just the right ingredients and just the right quantities. Because this was one recipe that I did not want to get wrong. I put a tremendous amount of pressure on myself. I doubted myself and I worried that I was doing it all wrong.

These feelings, all of these crazy intense feelings, are exactly the reason I am putting our story out there. I want my voice to matter. I want the experiences we are navigating to mean something. I want to see the pain and the struggle become something positive; for us and for Grayson. I want other parents faced with the same things to understand that they are not alone. I want the momma hiding under her covers afraid to face the world to know that I was exactly where she was. I want the parents struggling to pick the right balance between therapy and school, pulled out verses integrated, typical verses untypical to know that there is no perfect recipe. I want to give those parents the permission to do it all wrong. To fail. And then to pick up the pieces and put it together in a way that makes sense for their family. And if putting our experiences out there, our journey down the spectrum, then I know that when the time is right I can explain my choices to Grayson.

I know that our parenting journey will include explaining our choices to Grayson. I know that one day I will sit down with my son and we will find the words to talk to Grayson about his autism. I know that we will have to explain Grayson’s autism to Rowan. We will need to teach both of them about tolerance and acceptance and difference. We will calm Grayson’s fears about being different. We will create a world around him full of love and support. We will make sure that he feels safe and protected. We will help him learn to embrace his autism; the same way my husband and I are learning to embrace it today. And if he is met with intolerance; we will teach him to rise above it.  I think this blog is the first step on our journey to teach Grayson about his autism. I know that Grayson will have a million questions. Many of the questions are probably things that James and I have asked ourselves over the past 15 months. And I want him to ask questions. I want to create a world for my family where we talk about the things we fear. I want us to give words to things that are scary, because sometimes just saying it out loud makes it less scary.

Every single word that I write here is true. But this is my truth. This is about my life as a mother to a son on the spectrum. I do not have autism and I will never understand what it means to live with ASD. I will love my son and support my son and I will fight like hell for my son. But I know that someday, when he is old enough, it will be his decision to live and speak his own truth. I know that his experiences will be different from ours. I know that watching him struggle, watching him in pain is the absolute worst feeling in the world. And as we move through our life together we will surely face struggle. We will surely face pain. But we will push forward. We will never walk away from a bad experience without learning something from it. We will do the wrong thing. We will learn to go back to the beginning and try again. And I know that I will be prepared to help Grayson along his journey. I know that because of this journey that I am on right now. All of these experiences will help me teach Grayson and Rowan to pick up the pieces and move forward.

When I think about all of the millions of ways I will surely embarrass both of my boys during their lifetime; sharing a blog that teaches awareness and acceptance seems like the least of our worries. My job as their mom is to teach them to live an authentic life; and that is exactly what I am doing. One mistake at a time. And so here, in my safe place, I tell you that I am not perfect. I make mistakes. But this blog, sharing these experiences, is not a mistake. And I will teach my sons that sometimes when you have something to say…you should just say it.

JS

Just relax…

The art of “relaxing” is definitely a lost art in the Sylfest house. We learned a long time ago that our hardest times of the day are the moments that are supposed to be the snuggliest and most relaxing. I had this idea of our parenting journey that included the kiddos crawling into bed with us in the morning to watch a cartoon. Or all of us snuggling under a blanket on Friday night with popcorn. And, those are really great visions. And I often hear my friends recount stories about these types of moments and I cannot help but feel a little sad. And a little tired. You see, when we learned that relaxation was not really “our thing” we did what we do with all of the other moments of our life…we scheduled.

Down time is particularly difficult for Grayson. He has a hard time sitting down next to someone without being overstimulated and needing to touch or hit or jump on that person. There is about a 5 minute window right after he wakes up and right before he goes to bed that you may be able to grab a quick snuggle while he drinks his milk. But that moment ends abruptly. Usually partnered with a punch to the arm or an unexpected jump that sends my coffee flying. And from that moment…it is go time. That 5 minutes is the end of our “sitting” time for the day. We do what we know works; we make a schedule. We move from one activing to the next setting clear expectations. Our visual schedules started simple when Grayson was 2 years old, but they have since evolved. We can map out a sequence of up to 5 activities for Grayson that schedule out a block of time. He uses these schedules in therapy. So using them at home helps create consistency. It also makes getting through the days easier.

There are a lot of times that I wish our life was less scheduled. That I long for a “go-with-the flow” day that is adaptable and un-scheduled. There are times when we are invited to something spur of the moment and we wonder about the consequences of saying yes. Occasions when we are invited on an overnight visit and we worry about our schedule and our behavioral plan and how it will adapt with us as we travel. You may be reading this and thinking that we are nuts. That it is crazy to have a schedule so strict. There are moments when I think even the people closest to us question the authenticity of our true need for the schedule. Moments when they question our approach and wonder if it really isn’t more about us than it is Grayson. And in the beginning I used to let those reactions hold me down. I used to let the disappointment of saying “no” wash over me. I let it linger with me and I would feel bad for days. I would myself questions our approach. I would question whether or not we were doing the right things for Grayson, for our family. And in the beginning a lot of times we said “yes” when we knew “’no” was the right answer. And we said “yes” because I hated the feeling of being second guessed. I hated knowing that people thought we were copping out of living life. Life the way they thought we should be living it. Life they assumed could be lived the same way that there’s was.

Along this journey acceptance washes over you in the strangest of moments. I actually remember the day I decided to stop saying “yes” when I wanted to say “no”. I remember how liberating it felt to decide that is was ok to do what we thought was best. Even if it made people question us. Even if it made people second guess our approach. You see, we make the choices we do because only the four of us live this life every day. There are lot of people that get to see pockets of time, moments of our life. But no one sees the whole thing. When I talk about our therapy schedule people always ask how we get it all in during the week. And the truth is that it is not easy. On top of the therapy hours there is a lot of time spent in our house preparing for therapy. Can you imagine what it would be like to have a revolving door of people in your house every day of the week and Saturday? To never have a moment to let the mess pile up or the dishes over flow? To live in a house that is “company ready” at all times? And sure, they tell us to live our life normally and not worry about our house. But if you know me at all you know that this is not an option. So we live in a house that is always ready for visitors.

So we take on each day. And every day is a little bit of the same and a little bit of different. Someone somewhere along the way told me they would love to see a time study of everything we cram into a day. This morning I was home alone with my boys. We were scheduled to have therapy from 9am-12pm and other than that planned to spend the day around home. So I grabbed my iphone and kept a log of our morning together….

  • 6:53am Grayson wakes up, walks to hallway, sits down and makes noises trying to wake me up.
  • 6:55am I set a 5 minute timer for Grayson to take his pull-up off and go potty.
  • 7am Timer goes off, Grayson melts down about going potty.
  • 7am-7:05am Grayson throws toys around the house and slams door in an effort not to go potty.
  • 7:05am Grayson goes potty.
  • 7:06am Grayson melts down about putting underwear on.

*Side Note: Potty training is still pretty new for us and he is handling it like a pro. Mornings are tough for him some days. Today was a tough day.

  • 7:08am Grayson drink his milk on the couch will all of his blankets. He still moans when he drinks (aka slams) his milk like he did when he was a baby. It is probably one of my favorite moments of the day. He also still hold his little lovey “ducky”. It is one of very few moments in a day when he is completely relaxed and still.
  • 7:09am Mommy makes coffee #1.
  • 7:10am Rowan wakes up, I change his diaper and bring him out.
  • 7:12am We make a visual schedule for the morning: (1) Watch a show (2) Eat Breakfast (3) Get Dressed, (4) iPad, (5) Therapy with technician.
  • 7:13am all 3 of us sit on the couch and Grayson demands “Might Machines” on Netflix.
  • 7:14am Grayson hits me on the arm and starts jumping towards me on the couch
  • 7:15am I take my coffee and hide out in the kitchen.
  • 7:18am Rowan runs into the kitchen demanding pretzels.
  • 7:25am potty alarm goes off and Grayson goes potty without incident.
  • 7:35am Rowan and Grayson dump every single toy in the playroom onto the floor.
  • 7:38am we begin cleaning up every single toy in the playroom. And by “we” I mean “me”.
  • 7:42am I begin making breakfast.
  • 7:50am potty alarm goes off and Grayson goes potty without incident.
  • 7:53am I have been awake for 1 hour and my Fitbit tally is 1,342 steps.
  • 8am Rowan and Grayson sit at the breakfast bar and eat breakfast. Rowan demands milk and then throws it. Rowan demands water in his Elsa cup and then throws it. Rowan demands water in his Tinker Bell cup and then actually drinks it.
  • 8:05am Mommy makes coffee #2
  • 8:10am both boys get down from breakfast having eaten basically nothing.
  • 8:12am Grayson takes a 4 minute time out for being too rough with Rowan. He gets down 12 times during the time out.
  • 8:15am there is a moment of peace in the palace.
  • 8:17am Mommy microwaves her coffee.
  • 8:20am Rowan is in 2 minute time out for hitting mommy and yelling “stop it”.
  • 8:20am Potty alarm goes off and Grayson attempts to poop in the potty.
  • 8:25am Success!
  • 8:30am Grayson gets an iPad as a reward for pooping.
  • 8:31am Rowan demands an iPad.
  • 8:32-8:44am Both boys play independently on their iPad.
  • 8:33am Mommy microwaves her coffee.
  • 8:45am Potty alarm goes off and Grayson goes potty without incident
  • 8:49am Mommy microwaves her coffee.
  • 8:50-8:57 Rowan and Grayson sit together on the couch and watch the same iPad screen. This is crazy super ridiculously rare and awesome!
  • 8:53am I have been awake for 2 hours and my Fitbit tally is 2,042 steps.
  • 9:04am Technician calls to delay 9am session to 10:30. Meanwhile Grayson is pressed against the window awaiting the tech. To distract him we adjust and bundle up to go outside.
  • 9:10am Every single toy outside gets dumped into the yard.
  • 9:35 Potty alarm goes off but Grayson is sad about going inside. In process he pees his pants. We go inside and change his clothes.
  • 9:37am Hot chocolate to warm up from outside.
  • 9:39am Make a visual schedule (1) Plah-doh, (2) Snack, (3) Therapy
  • 9:43 Mommy makes coffee number 3 while realizing she has eaten nothing but coffee.
  • 9:45 -10:15am Play-Doh, this is a long time for us to do an activity.
  • 9:53am I have been awake for 3 hours and my Fitbit tally is 3,105
  • 9:55am Potty alarm goes off and Grayson goes potty without incident.
  • 10:18am Technician arrives.
  • 10:20am Grayson does not handle the transition well. Pushes Rowan and he falls down and bumps his head. Gray takes a 4 minute break in his room.
  • 10:22am During Grayson’s break he pees in his pants 3 minutes before the next potty alarm. We change clothes again.
  • 10:25am Grayson and the Technician go downstairs for session.
  • 10:26am Rowan help mommy clean up Play-doh and then chooses a snack and Tangled. He enjoys a few minutes of peace.
  • 10:28 Mommy realized she make 3rd coffee 45 minutes ago and never drank it. Coffee goes in the microwave.
  • 10:30 Mommy changes the laundry over.
  • 10:32 Mommy cleans the boys bathroom (potty training is gross).
  • 10:53 I have been awake for 4 hours and my Fitbit tally is 3,905.
  • 11am Shakeology for survival.
  • 11:05am Grayson comes up on break.
  • 11:10am Grayson pushes Rowan down. After some convincing he says sorry and gives him a kiss.
  • 11:15am Potty alarm goes off and Grayson goes potty without incident and then goes back downstairs for more session.
  • 11:20am Grammie stops into drop off some things off.
  • 11:25am Technician races upstairs with Grayson who is on the verge of a poop.
  • 11:30am Poop success! Back downstairs for more session.
  • 11:32am Mommy warms her coffee in microwave again.
  • 11:53am I have been awake for 5 hours and my Fitbit tally is 5,304.
  • 11:59am Mommy warms her coffee in the microwave, again.
  • 12pm Visual Schedule for family session: (1) Game, (2) Puzzle, (3) iPad time
  • The family session did not go well. Gray was tired and distracted both boys were hitting and unfocused. After a Rowan timeout and then a Grayson time out we decided to call the session early.
  • 12:38pm Grayson goes into bed for iPad time before nap (iPad time is a reward for pooping in the potty earlier).
  • 12:53pm I have been awake for 6 hours and my Fitbit tally is 6,458.
  • 1:08pm Rowan goes down for a nap.
  • 1:12pm 21 Day Fix Pilates Fix.
  • 1:45pm Shower.
  • 2:15pm Mommy sits down to eat a meal and write a blog.

This was actually a really interesting experience. I always joke about how many times a day I microwave my coffee, but holy cow! During the week I drink 1 coffee while I get ready and 1 while I drive to work. I never microwave them one single time. Just one example of different it is trying to do “normal” daily activities surrounded by kiddos.

Our life is crazy and insane and wonderful and exhausting. And some days we do a better job than other days. Some days we get off of track. Somedays things happen. Technicians cancel or come late. It rains after we’ve “scheduled” outside time. The iPad freezes during iPad time. These things happen and they help us teach Grayson, and Rowan, patience and tolerance. They help us remember that even though life is easier with a schedule; there are some moments in life you cannot plan for.

JS

Rise Up

The day I started writing this blog I did something that has become a part of our normal weekend routine. I woke up before 7am on a Saturday and I headed to the grocery store for groceries and donuts. As I made my way to the store I enjoyed a moment alone in my car. I enjoyed the easy silence of the morning. And then I realized that without knowing it I had driven most of the way to the store listening to my kiddo’s CD. So I switched over to the radio and continued my drive. I pulled into the store I realized that I was crying. I stopped for a moment to try to understand what had happened. Why was I crying? And then my brain focused on the words of the song playing on the radio. I quickly downloaded the song and I sat in my car in the grocery store parking lot for another 10 minutes and listened to the song 3 more times. I listened and I cried. And then I took a deep breath, wiped my tears, and headed into the store for groceries. In that moment I had discovered something that has become very precious to me; my fight song. It is the song I turn to on a tough day. It is the song I need when life feels too big. To real. It is the song that reminds me why I am on this journey. Why I was picked to be Grayson’s mommy. It is the song that reminds me that I am doing the best I can and that my best will always be enough; even when I feel like I am falling short.

I want to talk about this song. And about the importance of having something like a fight song to keep me fresh and moving forward. But before I do that I need you to read these words. Maybe even click the link and listen to this song. Because whether you are living with a child on the spectrum, or battling through any number of other difficult situations, I think these words matter.

Rise Up by Andra Day

You're broken down and tired, of living life on a merry go round. 
And you can't find the fighter, but I see it in you so we gonna walk it out. 
And move mountains 
We gonna walk it out 
And move mountains

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

When the silence isn't quiet, and it feels like it's getting hard to breathe. 
And I know you feel like dying, but I promise we'll take the world to its feet. 
And move mountains 
We'll take it to its feet 
And move mountains

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. For you

All we need, all we need is hope, and for that we have each other 
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

Listen here: “Rise Up” by Andra Day

This song speaks to me from the very first words. Because so many days I do feel broken down and tired. Too many days I will myself to find the strength to move forward, to not give up. This week we had a technician in our house from 5-7pm for family therapy. And at the end of a particularly trying meltdown she looked at me and said “I don’t know how you guys are always so calm.” And the thought that ran through my head was “well, it isn’t like I can totally lose my shit while you are in my house.” And the truth is, that sometimes I do want to totally lose my shit. To come completely unhinged. To duck and run for cover. And in those moments I am blessed to have a partner that can see those feelings and those needs wash over me. And so he gives me permission to take a step back and collect my patience. I take a moment long enough to remember that I am mad at the autism and not at my child. That is a gift that my husband and I give each other every day. The gift of allowing each other to have moments of imperfection. Sometimes it is over in an instant. The second I close the door to my room and take a deep exhale I feel ready to go back out and face the melt down. And some days I linger longer. Some days my moment turns into the need to run to the store or go for a walk. And I am not going to apologize for that. Sometimes, I need to get away. And that is the thing that fuels me to come back and do it again. To be better. To rise up. And so when I hear the words “when you are broken down and tired, and living life on a merry go round” I think, oh thank you god I am not alone! Someone else, somewhere else feels this way.

But I think the thing that I most connect with about this song is that it is not really about the writer at all. Sure, she is the one that is going to rise up, but she is doing it because of someone else. Someone else that she loves so deeply and believes in so strongly, that she will walk to the end of the earth to be the strength that person needs to keep moving forward. And this is exactly how I feel about being Grayson’s mommy. And this is exactly how I feel about being Rowan’s mommy. As a parent you realize that so many things that happen in the course of a day have nothing to do with you. We move through each day, through each moment, through each triumph and each struggle with a laser focus. A focus on doing everything in our power to keep our children moving forward. To help teach them what they will need to know to make good decisions for themselves. To give them every resource possible to give them the best chance at being happy. To be healthy. To live a full life. And that is what this song is about. About knowing that it will not be easy. Knowing that the parenthood journey will require us to both push and be pushed. Knowing that we will need to put our own fears aside to be strong for our children. To help teach them to be strong.

If you listen to this song it may mean something different to you. It may not speak to you at all. But it speaks to me. It gives me strength. This is my fight song. And I think at the end of the day we all need a fight song. We need something to propel us forward. To help us find the strength that left our bodies, the hope that left our hearts and the will that left our brains. It helps us find all of those things; and it brings them back to life. I tell you what, I already know that my love for my children can move mountains. Because it already has. Together, my husband and I have risen time and time again to face things that scare the crap out of us. And because we rise up; so will our children.

JS

 

 

 

 

 

If motherhood were a job description.

There are so many ways in which my professional life and my mommy life intersect. Like many working mothers I feel pulled between my two worlds. “Mommy” is without a question the most important job that I hold. It is the job that fills my heart and gives my life meaning. But there is something about my professional job outside of my house that fills me up as well. For me knowing that I can go somewhere where I am needed, where I provide a skill that I am good at, where my voice and my input are not only listened to (without interruption) but are valued provides me with a sense of pride and accomplishment. I show up where I am supposed to be. I work against a list of targeted goals and objectives. I fight fires throughout the day. I make progress; move forward. At the end of the day I leave knowing exactly where I stand. Knowing exactly what is needed of me the next day. I know my priorities and I set a plan. And then I leave my job and I go home. To a place where goals and objectives are more like moving targets than fixed items in a corporate strategy. You see, the mommy job is a little less structured and predictable. The mommy job is “fluid”, ever-changing. And some days that is the best part of the mommy job; and other days it is the worst part. The mommy job is the hardest job that I will ever have. It is the job that makes me question and push myself in ways I did not imagine. It will push me to the edge of breaking and then in one instant pull me back and warm my heart with a love truer than any other. The mommy job is the best job in the world. It is also the most challenging job. But the rewards for doing a good “job” as a mommy are so fulfilling; watching the little people who call you “mommy” grow and change and learn is worth every single challenging moment on the job.

My professional job teaches me that people go through life building a resume of their accomplishments. And their resume is measured against a job description to determine whether or not they are “up for” the challenges that a job presents. In my professional world the first step to any recruitment is to clearly define the job description. To truly understand the objectives and requirements necessary for success. The criteria to which resumes are measured against. It all begins with the job description. Yet my personal life teaches me that no one presents woman with the job description for being a mommy. And most baby books cover the cutesy stages of development and milestones without spending any time talking about the real stuff. And so we find ourselves in this crazy amazing intense job as a mommy without knowing exactly what we were getting into. And we do our best. And some days we feel like we could write the book on motherhood; moving through the day with ease. And other days we wish someone would hit us across the head with the book and put us out of our misery. But in all reality most days are somewhere right in the middle.

But what if there was a job description? What would it say? Here at the intersection of my two jobs; mommy and recruiter, this is how I see it.

Position Summary:

We are currently in search of a Mommy to join our team! The mommy will be the individual responsible for providing exceptional care to all members of the family; at all times of the day (Including of course: the exact moment that warm food is served, seconds after you sit down to do something productive, and at the precise moment you shut your eyes to sleep). The mommy will put herself aside to meet the needs of her family. She will overcome insane odds to deliver the highest quality results at all times; under all circumstances. She will do it with a smile on a face and love in her heart. She will go without sleep, food, and personal space to provide the highest level of care to those she loves the dearest. She will jump at a moment’s notice. She will give more even when she has nothing left to give. She will dig and push and fight and never give up. She will be your biggest alley and your worst nightmare. She will be a mommy; and mommies are invincible.

Essential Duties and Functions:

  1. The mommy will start each day at a time determined by someone else. This time will be variable; ever changing. This time will always be the earliest the morning after the mommy stays up late. This time will always be the latest on the mornings when the mommy has to get up early. (NOTE: If the mommy dare engage in an evening of alcoholic beverages, this time will inevitably be 4am.)
  2. The mommy will create, manage and navigate a schedule filled with events that are all of equal importance. The mommy will find a way to “do it all”.
  3. The mommy will spend ample time every day snuggling away tears and kissing away boo boos. These things will likely occur at the most inconvenient times and places. It is the mommy’s job to make sure the child does not feel like an inconvenience.
  4. The mommy will think 20 steps ahead; always. The mommy will see things a million different ways and will understand all of the possible outcomes. The mommy will think and rethink and then think some more in order to make the best decisions for her family. Sometimes decisions will not make any impact on life. Sometimes decisions will be life changing.
  5. The mommy is the fixer of problems. Missing stuffed animals, broken cookies, not enough milk, too many snacks, etc. No matter the problem size or magnitude the mommy will fix it.
  6. The mommy may break down and ask for help, but only after she has struggled over the decision for days. She will take herself to the point of breaking before realizing that she may not be able to do it all alone.
  7. The mommy will build a support network of loved ones and friends to help. This is essential to the mommy’s success.
  8. The mommy will cook meals, clean bedrooms, do laundry, prep lunches, make schedules, read stories, snuggle, and brush teeth daily. (A lucky mommy will have an excellent daddy to make this part a lot easier).
  9. The mommy will give parts of herself that she did not know existed for her children. She will push herself to her limits. And then she will create new limits and push to those.
  10. The mommy will sacrifice pieces of herself for her children; and she will not have any regrets about doing so.
  11. The mommy will say the same things so many times that her brain will begin to slowly shut down. She will also hear the same things so many times that she may experience selective hearing loss. This is normal and damage.
  12. The mommy will wake in the middle of the night worrying about things that are out of her controls.
  13. The mommy will replace abs workouts with bending over to clean-up toys.
  14. The mommy will fill in as needed as a taxi driver and a short order cook. There will be no notice before the mommy is asked to fill these roles.
  15. The mommy will advocate for their child. She will make sure that all of her child’s needs are met. And that anyone who comes into contact with her child provides exceptional care.
  16. The mommy will do her best to take care of herself too. She will schedule times for breaks (you know: eating, sleeping, R&R). This items should be scheduled on the family calendar to be sure that no conflicts arise.
  17. The mommy will not take any time to publically process her emotions and fears. She will do this at home; on her own time.
  18. The mommy will love bigger and deeper with every breath their child takes.
  19. All other duties as assigned by the kiddos. Or the hubby. Or pretty much anyone else.

Position Requirements:

  • Insane amount of love in your heart.
  • Ability to demonstrate nurturing and kind-hearted approach.
  • Superior skills in time management and prioritization.
  • Patience.
  • Ability to manage multiple tasks at one time.
  • Exceptional diaper changing skills.
  • Tolerance for: Hitting, Kicking, Screaming, Biting, Arguing, Negotiating, and lots of other really annoying behaviors.
  • Must snuggle.
  • Demonstrated success putting out fires.

 

Physical Requirements:

  • Sitting:                 0-15% of the time (Ha, year right momma. Not this job)
  • Standing:            Up to 100% of the time
  • Climbing:            (Does this include being climbed on?) Up to 100% of the time
  • Bending:             Up to 100% of the time (The toys will not pick themselves up!)
  • Pushing                Up to 100% of the time (Pushing yourself forward)
  • Pulling:                 Up to 100% of the time (Sometimes pulling out your hair)
  • Balancing:           Up to 100% of the time (Balancing is an acronym for “parenting”
  • Carrying:             Up to 100% of the time (kids, laundry, toys, etc.)
  • Ability to lift up to 50lbs

 

Ok, so being a mommy may not come with a role description. But if it did, I think it would sounds something like this. Mothers know how to live at both extremes; and they know to find peace and comfort when they get to spend time in the middle. Being a mommy is about knowing your limits and always being open to redefining them. It means finding the balance between loving your children and loving yourself. It means accepting that sometimes the best thing you can do for your family is to take care of yourself. To take time to recharge your batteries and refuel you soul. To remind yourself that you are good at so many things; not just changing diapers and kissing away skinned knees. The best mommas I know understand that they are not perfect. They give themselves permission to do it wrong; and then they come back a little wiser and a little tougher when they try to do it again.

Being a mom is the best job in the world. But the truth is; it really is not a “job” at all. It is an adventure and a blessing and an unpredictable journey. It will bring the highest highs and the lowest lows into your life. It will become a part of your life that defines you; and changes you. It will take over your life in ways you are not prepared for. And motherhood looks different for many families. There are very traditional and untraditional ways to become a mother. And no matter what your road to motherhood looks like; the destination is always worth the journey. I am blessed in my life to know so many women whose paths to motherhood looked incredibly different from mine. I know women who grew up not knowing if they wanted children, but then very naturally headed down the path. I have women in my life who struggled with fertility; and they pushed forward in the way that made sense for them on their journey. Some followed the path to adoption; others sacrificed years of their lives and their bodies and their marriages to achieve fertility. I know mommy’s who have lost a child; something more tragic and un-natural and heartbreaking than most mothers can imagine. To all of the mom’s in my life, and to the women out there still waiting to begin their journey, just know that each and every day…you are enough. What you are doing is enough. And sure, push harder if you can. Be better and keep learning and changing, because that is a natural and healthy part of life. But also make sure you celebrate you. Celebrate the sacrifices you make. The challenges you overcome. Give yourself permission to look at yourself in awe. For just one day; wear your cape proudly on top of your clothes.  This “job” is a gift. And this gift is precious. Hold it dear to your heart. Cherish it and be thankful for it every day.

Jess

*This blog is dedicated to my mom, my grammie Shirley and my aunt Brenda. Three women who taught me about motherhood. About overcoming obstacles. And about stopping at nothing to empower your children to be great. To be filled with faith. To be 100% who they are. To live life unapologetically for your children, but a little bit for yourself too.

The Mourning.

There is a numbness that settles in after diagnosis. It is a numbness that takes over every part of you. Instantly. In the moments after diagnosis it is as if someone outside of you reminds you to breath. In and out. In and out. Breathe. You cannot survive unless you keep breathing. And this goes on for a while. You breathe because you know you have to. You breathe because even after everything else; you know that you need to push forward. To live. To fight. And so you breathe. The breathing feels heavy, forced. The numbness washes over every part of you. It tunnels your vision. The only things in the world that matter are your child and the life sentence they have just handed down. And because you do not know what else to do; you do nothing. You do nothing for a while. You do nothing until doing nothing is no longer acceptable. You do nothing until you realize that doing nothing is getting you nowhere. I know that my words are hard to hear. I know that it is sad to imagine us in such a low place. But we were there. We lived there, alone, for a while. We did that because it is a part of the process. We did that because what was happening to us is real.

In the autism community they refer to the time after diagnosis as the mourning. People who have experienced death may have a difficult time with my using the word mourning to describe what we went through. Let me say that I truly mean no offense. Having lived through this time, it is the word that most accurately captures the way that I felt. My heart felt heavy. My hope was lost. We do not always know the perfect thing to say or the exact way to move forward. And, it was our mourning following the diagnosis that gave us the permission we needed to completely fall apart. To have no clue what to do next. To feel lost and scared and alone. And then from somewhere inside of us that we did not even know existed; we found the strength to rise above together. Look, the things we talk about here are not comfortable. They are real. These are real things that happened to us. And they are real things that could happen to anyone. For me, giving our experience words feels like giving our experience wings. We’ve talked about diagnosis. About hearing things about your life, about your child, that you never thought you would hear. This is about what comes next. The mourning. The pain. Finding the strength to move forward.

Driving home from the diagnosis is a blur. I know that we got home, paid the sitter watching Rowan, unpacked our luggage, started laundry and went on with our normal nightly routine. I know that we did these things because we had to do these things. But I do not remember exactly how I programmed my body to get through these things. The numbness set in fast. It took over every part of me. I remember feeling like I needed to snap out of it, but I couldn’t. The best way I can describe this time is feeling like EVERYTHING and NOTHING changed all at the same time. Grayson was still the exact same person he was when we walked into that hospital. He had the same behaviors, the same limited speech. But somehow; our life trajectory seemed completely different. In that moment everything was different. Harder. He was the same. We were the same. But everything felt different. He felt smaller, more precious. He felt like something we needed to protect. During the days after the diagnosis I would often catch myself staring at Grayson. Trying to see the autism in him. It didn’t matter that my head knew that it was there, my heart just did not want to see it. So I would stare at him and will it away. I would find ways to argue about diagnosis being incorrect. I Googled so many times about 2 years olds being mis-diagnosed. I Googled about 2 year old autism and hoped to find that most often it turned out to be anything but autism. I needed it to go away. I needed to rewind the clock to a time when we lived in hypotheticals. To a time when Gray was just speech delayed; nothing more, nothing less. I needed those things, but I needed them for me. I needed them because they helped me move forward, but they did not help my son move forward. So I found the strength to push those thoughts away. To dispel my hopes that this was just all one big misunderstanding.

For the first few days I could not say the words out loud. Even to my very best friends and my parents. I could not say the words; so I wrote them. And as I wrote them tears pooled down my face. As I wrote them my head filled with fears and worries and sadness. I mourned things that I didn’t even have yet. My head raced to middle school sports and high school prom and college and weddings and children. I dreamt up all of the worst case scenarios and pictured a life for Grayson that was much more difficult than the life I dreamed up while I was pregnant. The fear and the worry took over my brain. I went to work during the day but I was just existing there. I sat in a daze letting my head fill with fear and worry. I would stare blankly into space and search for the strength to snap back into reality. At home I would do my best to be the mommy that Grayson and Rowan needed, but I just wanted to crawl into bed and pull the covers over my head. I wanted to be somewhere else, anywhere else. Sometimes I did have to hide away. Sometimes I would wake up at 3am from a deep sleep and find myself sobbing in bed. My husband would roll over and put his arms around me and just hold me while I cried. I was crying for Grayson. For the life I had dreamt up for him; and for the harder more challenging life I now knew he would live. I cried for myself. For the sadness over lost friendships and changing ways. I knew that the diagnosis would change our course; so I mourned the old course. The old friends. I prayed that they would make the journey with us, but I mourned the idea that they may not. I mourned the idea of having a conversation with my 2 year old. I mourned the milestones we would not pass. I mourned the school I was told we would have to leave behind. I mourned the friends at that school that Grayson and I would have to say goodbye to. I mourned the idea of starting over at a new school. I mourned the idea of being different.

At that time I felt like autism was an ugly mole that I had to hide away. It was something that I needed to control; to hide. I was not sure yet what Grayson having ASD said about him, about us, about our life. I needed it to be something that we kept close to our hip. And so we did. We circled our wagons and tightened our circle. We kept ourselves safe from the outside world. We stopped going out completely for a while. We felt completely alone, on an island. That first 3 months after diagnosis we tried to exist alone. Our families were far away and we were living life minute by minute together. We knew we would make a million mistakes, but we did not know any other way to move forward. People often ask about James and I and our marriage. They read the reports about autism and divorce. But, I will tell you this….we went through this together, every single step of the way. And it has bonded us in a way that most people cannot imagine bonding. Sometimes our life feels like a pressure cooker for our marriage, but when we step outside and look in we realize that we are handling everything life throws our way with as much patience, understanding and grace as we can muster. Sure, we are not perfect. But our life is not perfect. And we give each other permission to be imperfect.

You see, during all of this mourning we still had a life to live. I was still a mom. We had to keep moving and shaking and living our lives. In fact, it may surprise you to hear that during this time of such intense mourning, I arranged all of Grayson’s Mercy Options Treatment. I spent countless hours on the phone. I prepared paperwork and documents. I attended meetings and answered questions. Doing the best thing for Grayson; fighting for him and his services was like second nature to me. In fact, it was the only thing that truly let me escape the mourning. It was the thing that gave me life. Fighting for Grayson became the thing that I was best at. And quickly I learned that my voice mattered. I learned that picking myself up and finding a way to fight was the only option. I do not think that ending the mourning was a decision that entered my brain. One day, it was just over. I am not going to lie to you; there are still moments on this journey that send me to the fetal position. There are moments or days or weeks that feel like they are just going to swallow us whole. I tell myself each day that I can be better than I was the day before. I can fight harder or be more patient or find more energy. I set expectations of myself that I know I will never live up to. Sometimes as words leave my mouth I know that they should have been different or in a better tone. I still mourn things. I still feel sad about missed experiences or opportunities that pass us by. I still hope that our future path is less full of challenge and struggles. I still pray that the people in our life find a way to relate to and accept our journey. I still feel all of these things because they continue to be very real for us. For the longest time I felt like I had to protect my journey and maybe even feel shame for it. Today I understand that the only shame I feel is for the lack of understanding and compassion from other people. This journey is only what I make of it. So I choose to give our story wings. I choose to put words to the things that no one explained to me after diagnosis. I’ve said before that I wished there had been a tour guide or a book to walk us through the steps after diagnosis. But, the kind of book I needed did not exist. I needed someone to tell me that it was ok to completely freak out. Like, for a while. To lose complete control of my emotions and my logic and my reason. To lose hope a thousand times. To question and run and hide. To make autism something scary hidden in a box, under a blanket in a deep dark closet. I needed to know that it was ok to leave it there. To keep is locked away. Until I was ready. And then I needed to know that I could slowly let it out. I could first remove the blanket. And the move the box into the open. And then let the autism out of the box. And the embrace it; live with it. Grow with it. Even learn to love it. I need to follow this journey. And I think this is something that other people experiencing diagnosis need to be told. FREAK OUT. Because it sucks and it is scary and it is something that you never imagined on your path. Freak out until it is less scary. Until it is something that you can imagine living with. Freak out. And then, move on. (If you remember, my 4 year old taught me that!!)

The morning after the mourning is calm like a calmness you have never known before. It is peaceful and steady. It is an understanding that life if different, but you are ok. The morning after the mourning has come. And so you move forward.

JS

4 Things I have Learned from My 4-Year-Old.

bdayMy little man turned 4 years old yesterday! It is amazing how time changes once you become a parent. In some moments you find yourself longing to hold on and drag single moments out forever; and in other moments you desperately search for the fast forward button. And then all of the sudden another year has gone by. And your baby is another year older. Another year closer to being a “big kid”. Sometimes I catch myself calling Grayson “baby” and I correct myself. But, if I am being honest he will always be my baby. Grayson made me a mommy for the first time. He taught me about unconditional love. He stretched my heart to know no boundaries. He and I spent 17 months together at home; playing and exploring and falling completely in love. He will always be my baby. And, as he grows older I will do my best to remember not to call him that in public. But, I know that I will always feel it in my heart.

Birthdays are life’s way of reminding us just how precious time is; and how quickly it can pass by. On each of Grayson’s birthdays I cannot help but look back on his time in this world. Sometimes it feels as though we have lived enough highs and lows to fill many more than 4 years of time. And other times it feels as though I blinked and the years were gone. As I reflected on his birthday this year I could not believe how much we packed into a year. Grayson pushed himself in ways I never imagined that I would have to ask my child to push. He came face to face with things that should have beat him down, but he stood firm. He gave up so much of this year to work hard. He grew and changed and moved forward; more this year than in any previous year. I see Grayson every day, and so sometimes it is harder for me to see how much he progresses. And then all at once it will wash over me. I will see the incredible changes that have been made. I am always proud to be his mom, but this year took that pride to a whole new level. I have been lucky enough to help Grayson; to teach him and push him move forward. But, if I am being honest I think I’ve learned more from him. He teaches me new things every day.

Here are 4 things I’ve learned from my 4-year-old.

  1. Patience. Oh boy oh boy has he ever taught me a few lessons in patience. In fact, with each passing day I am getting closer to writing the book on patience. It would be a pretty short book; you ready for it? Just breathe. It sounds way too simple, but it is not. There are so many moments in a day that feel bigger than me; bigger than I can handle. Harder, faster, slower, more intense, more frustrating…just bigger. And I could get worked up. I could scream from the top of my lungs. I could punch a wall. I could run away. I could hide. I could do all of those things and they would get me nowhere. Or, I could just breathe. In and out, slow and steady. I could give myself the moment I need to be centered, be calm. I can breathe until life feels softer, slower, steadier, less intense, less frustrating…smaller. More manageable. Sometimes Grayson is in control of the behaviors that require my patience. And sometimes he is not. And sometimes it is really hard to tell which is which. So we just breathe. Sometimes we remind each other to breathe. As crazy as it sounds; in the hustle of the day we actually forget to breathe. We forget how easy it is to take back control. To calm ourselves down and move forward. More patient. Better. Ready.
  2. Tantrums. Grayson has mastered the art of the tantrum. In fact, it is a skill he has been honing for a while now. You may think I am insane to be speaking about his tantrums in such a positive favorable light. But, one thing I’ve learned on this journey is that we find lessons in the most unexpected places. Grayson’s tantrums are so methodical. They are almost systematic in the way they unfold. Actually, sometimes I just take a step back and watch him.  We spend so much time with Grayson, so at this point we have the whole tantrum routine down. Usually a tantrum starts with some kind of negative stimulant. And then almost instantly you can see and feel and energy was over him. I often say that he is “buzzing”. It is an energy that you can feel and see and sometimes even hear. Not an actual noise, but a super intense energy inside of him. I am not a scientist or a doctor, but I swear to you…this happens. And then all at once he is so full of energy that we can see him ready to burst. So he bursts. Sometimes he bursts from his mouth. Sometimes he bursts from his body. And sometimes he bursts from everywhere all at once. And after he bursts he exhales a deep breath and goes back to what he was doing. A calm after a storm. A then the tantrum is over. Now, do not get me wrong, sometime the bursts lasts a long time. Like, a really long, I-am-going-to-pull-my-hair-out, long time. And sometimes the burst comes out in an instant and then pass. But, however long it takes once it passes it is gone. And then he laser focuses onto the next thing. Grayson does not look back and reflect on the moment. In fact, just after a tantrum it as if he could care less about what caused the tantrum in the first place. The craziest thing about this is that Grayson has the most incredible memory. So he may remember the negative stimulant that caused the tantrum forever, and I mean FOREVER. But in that moment, once his energy shifts back to neutral, he is completely over it. Can you imagine? Allowing yourself to feel something so deeply? Allowing it to wash over you so completely? Allowing yourself to work it out of you in the moment? And then walking away from it as if it never happened. Most adults choose to hold on to things. Despite our best intentions and our desires to be carefree; we allow things to fester. To consume our lives. Grayson may let other things consume his life (fixations, obsessions, etc.) but his tantrums come and go. Quickly. Swiftly. If you walked in the room 60 seconds after the tantrum; you would not know that anything had happened. Grayson teaches me that sometimes bad things, bursts of negative energy, take over our bodies. And the best thing to do is to find a way to let it out. And then move on. Really, truly and fully move on.
  3. There is black, there is white and there is Gray. It is natural to want to put things into categories; to file things away in ways that make sense to us. We need to know that things have a place. That at the end of the day things line up, work out, make sense. If you are anything like me having things this way helps you move through life. I am one of those people who cannot work from home unless my house is clean. I cannot cook dinner until all of the other dishes are cleaned and put away. I do things in a specific order that makes sense to me. Everything has a place. In many ways Grayson sees the world in black and white. He does not understand sarcasm. He doesn’t easily catch on to jokes (even though his might be the loudest laugh in the room). Grayson is programmed to see things one way. It is difficult for him to understand that words like “light” (light in the sky and something that is not heavy) or “shake” (to stir something up or the yummy stuff mommy makes in the blender) have 2 different meaning. Vocab is difficult enough for Grayson before we add in words with two meanings. I think Grayson’s memory helps him keep things simplified; if something was a certain way once, then it always will be. I am always amazed by the things he remembers. Just yesterday we gave him a Jeep power wheel for his birthday. Upon seeing the car he immediately said “just like Fynley.” Fynley is his friend who received a Power Wheel in September. Grayson has never been to Fynley’s house to see her power wheel. He has never spoken to Fynley about her power wheel. But, in September I showed him one picture, one time of Fynley in her power wheel. And, upon receiving his gift that was his first memory. He sees things so simply and so clearly. Yet, one of the biggest lessons he has taught me is that there are a million shades of grey. He may not see it that way, but every single day he reminds me that not everything has to fit perfectly into one place. Our life with Grayson has become about denying the idea that having autism files Grayson in one specific column. In fact, we believe just the opposite. We believe that Grayson will define and re-define who he is every day. He may never be 100% typical or 100% everyone’s idea of “autism”; because he is somewhere in the middle. Somewhere on the spectrum. The truth is that spectrum is grey. And, I think that may be the thing I like the best about it. It leaves room for difference. It leaves room for change.
  4. Love. The last lesson is probably the simplest and the most important; love truly is enough. Even when you think it won’t be. Even when it shouldn’t be. I learned that lesson the first time I looked into Grayson’s eyes. He taught me without saying a word. And he reminds me every single day. Loving Grayson makes me better; and his love for me makes me stronger. Love will always be enough.

I am sure that Grayson has taught me way more than 4 things during his 4 years in this world. And, I am certain he will teach me a million lessons as we move through this life together. And, my eyes are open. I am so thankful that he is taking me on his journey with him. I am so proud to be his mom. Grayson’s birthday is May 1st. A day that ironically comes just after the end of Autism Awareness month. He makes us aware and accountable every single day. And I love that his year long trips around the sun end with a month aimed at making the work more aware and more accountable. It seems poetic.

Happy Birthday Grayson Joshua. Thank you for teaching me. For loving me. For letting me love you. Happy Birthday my beautiful boy.

JS